The Preemie Experiment

Happy Birthday Paige!

2011-11-16T09:37:00.005-05:00

Happy birthday to our dear sweet daughter!

Your journey has been one marked by many ups and downs. You've always been a fighter, never giving up. You are my hero!

Your Daddy and I are so proud of you. We've watched you grow into this amazing girl, one who takes what life has to offer and runs with it. You are constantly trying to figure out ways to make your body and mind work in the world before you, even when it can be difficult.

You never quietly watch injustices being done to others but instead you boldly stand beside those who need your support and show others the right way to treat people. You are such an asset to humanity!

You are a WONDERFUL sister. Growing up as an only child, you are the exact sibling to Tyler that I wished I had.

We love you Monkey!!

Paige-after her confetti shower

I did it! We celebrated Paige's 13th birthday and I didn't cry the entire day!

Tears, tears and more tears

2011-10-26T10:17:00.002-05:00

Since my last blog post a lot has changed in our lives, as it obviously should since I haven't blogged in 10 months. But one constant seems to be that I'm quite teary. It seems that every time I turn a corner something happens that makes me cry.

Good tears and bad.

Some people may not understand why the act of crying is a big deal to me, others will completely understand when I explain. See, for the past (almost) 13 years I've held my emotions tight. After my water broke (at 23 weeks) and Paige was born (at 25.5) weeks I learned that crying would do nobody any good. I learned to turn off the tears as soon as they would come to the surface. It was difficult at first but became easier as the years went on. I'm not emotionless by any means. I just don't really cry often.

But there are the moments in life when something catches me so off guard that the tears start to flow before I can stop them. Sometimes I wonder if all the tears I should have been shedding over the years aren't stored up somewhere in my body. When the faucet gets turned on, 13 years of tears are trying to pour out.

Now I can't seem to turn off the faucet. We've had some big changes over the past 10 months, been in some pretty emotion filled situations too. I am constantly fighting off tears. Even as I type this the tears are trying to come out.

I'm hoping that by blogging again I can deal with some of these feelings head on.

By the way... I've missed you all. Silly, I know. But it's true.

Time Flies

2011-01-11T22:24:00.000-05:00

Research in the area of Prolonged or Chronic Pain in the Newborn

2010-03-09T16:21:00.002-05:00

(Sending "thanks" out to Sheila for posting this information)

Dear parents,

I would like to invite you to take part in research concerning prolonged or chronic pain in the newborn. In the last decades much work has been done regarding acute and procedural pain. Prolonged or chronic pain still needs exploration. With the aid of your opinion and the Delphi method we aim at describing the concept of chronic pain in the newborn, including a definition and description of etiologic and diagnostic determinants.

You can find detailed information about the background and methodology on www.ceepain.org

. Furthermore, on www.ceepain.org

you can participate in the first of our three-round Delphi survey. In this first round you will be asked to answer three short, open-ended questions.

With kind regards,

Christ-jan van Ganzewinkel

Neonatal Nurse Practitioner

Department of Neonatology

Máxima Medical Centre

Veldhoven, The Netherlands

And The Winner Is...

2010-02-14T10:45:00.009-05:00

Thank you to all who entered, blogged about the book and stopped by Team Spectacular to check out the wonderful work of Scott Wright. I want to thank Scott for not only writing/illustrating a truthful book about life in the NICU but also for providing a copy for our giveaway.

And now what you all have been waiting for...

Paige put all of the entries (49 numbered squares) into the tub that was used to give her a bath in the NICU.

She mixed them up,

gave them a good shake,

and picked one lucky entry...

and the winner is...

#35

Congratulations to tbonegrl! Please email me @ thepreemieexperiment@gmail.com with your address.

Once again, thank you all for supporting Scott with your kind words both here and on your own blogs. After you purchase a copy be sure to stop back here and let us know what you thought!

Let The Giveaway Begin!!

2010-02-07T11:05:00.008-05:00

I am quite excited to be a part of this giveaway. I swore I would never do this on my blog but that all changed the day I saw an on line page from this comic book.

Micro-Preemie Power, by Scott Wright, is a comic book journaling the NICU experience of Scott and Jodi Wright as they find themselves unexpectedly giving birth to a micro preemie. Their son, Morgan, was born 3 1/2 months premature weighing in at 1 pound 8 ounces.

Scott writes...

During these dark days I was completely barraged with questions from friends and co-workers. They asked, "How are you? How's Morgan? How's your wife?" I could never tell them the truth. It's not that I didn't want to. It just hurt too much to say, "My son is in the hospital and he may not make it through the day."

What I found myself doing after Morgan was born turned out to be an art journal. Everything I couldn't say to my peers began finding its way into my comic strip. I found it therapeutic. No matter what happened to him I wanted people to know his story. I knew that I loved that little guy and I would do anything to protect him. It made me realize I was a superhero just like all the other parents in the world."

I was first introduced to the on line comic strip, a year and a half ago, thanks to my "micropreemie" Google alert. I was hooked on the first one I read. I sat there, crying, reading the previous entries and then went back to the first one I had read and left a comment explaining that I would gladly promote it on my blog if he decided to turn the strip into a book. So, imagine my joy when I received an email, a year and a half later, from Scott letting me know that he would like to send me a copy of his book!

The day my mailbox surprise arrived Paige and I were leaving to go to her 3 month med management psych appointment. I decided that I would read the book while we were in the waiting room. The anticipation got the best of me and I opened the book while stopped at a light. Page 1... tears. Page 2... tears. I knew right then that I would be reading this book after the kids went to bed.

I could focus on the illustrations... yes, the illustrations are wonderful, but what makes this book extra special is that it is written through the eyes of a father. At the bottom of the strip, on each page, Scott and Jodi write personal notes. Through these notes you can clearly see the difference in which each parent is experiencing the NICU trauma.

And don't be fooled. Although this is a comic book, the content is NOT sugar coated. Inside you'll read about the alarms, needle sticks, not having enough time to research what is being done to your child, leaving your child in the hospital, family, the emotional highs and lows and even death.

I applaud Scott for giving the world a REAL view from the "inside" and not a fluffy-feel good depiction. Even the ending has yet another topic that is often dealt with among preemie parents.

Now for the fun... Scott has graciously agreed to give away 1 book to a lucky reader.

Here are the rules...

1. The giveaway begins today, February 7, 2010 and ends midnight (eastern standard time) February 13, 2010. The winner will be announced some time during the day on February 14, 2010.

2. ONLY ONE ENTRY PER HOUSEHOLD. You can enter by leaving a comment under this post. Do NOT post your address (you will be asked to email it to me if you win). If you enter anonymously please leave your name in your comment as a way of identifying you. You MUST at least leave your first name.

3. If you have a blog and you write a post directing people to this giveaway, I will add a 2nd entry in under your blog name! (please email me with the link to your blog post) This will double your chances of winning. (You will only get 1 extra entry, no matter how many blog posts you devote to the giveaway-let's be fair people) Your blog post MUST include a link to both my blog post and a link to Team Spectacular's on line store, where people can buy the book.

4. At the conclusion of the giveaway, I will either have Paige pull a name out of a hat or, if there are too many entries, I will use a site that will randomly choose a winner. I will post the name of the winner on my blog. You will have 48 hours to email me with your address.

And since I'm sure I will be asked (my readers have never held back)... I do NOT have any financial gain from this giveaway or any subsequent sales of the book. I am doing this because I truly feel that this is one of the best books out there that gives a honest glimpse of what we have all been through. My hope is that this book finds its way into the hands of the general public so that the face of prematurity is no longer misrepresented.

Speaking of sales... Let's remember that this book is written by one of us, a preemie parent. What better way to show our support than to head on over to Team Spectacular's store and purchase a copy for yourself. You won't be disappointed.

Many times we have discussed how friends and family do not really understand what we've been through. Here's your chance to show them... buy a copy for them too.

My apologies to Scott. No matter what I do I simply cannot get the photo of your book to fit correctly in this post.

Let the giveaway begin!!!!

Fun Stuff On The Way!

2010-01-24T10:29:00.002-05:00

I'm still trying to work out the details but in the very near future I will be filling everyone in about my mailbox surprise and holding a raffle of sorts so you can have one of your own.

Pregnant Woman Fights Court Ordered Bed Rest

2010-01-16T09:04:00.003-05:00

***Helen added a link in the comments which I am posting here. It is a later article written about the case and goes into much more detail.***

http://abcnews.go.com/Health/florida-court-orders-pregnant-woman-bed-rest-medical/story?id=9561460&page=1

I first saw this story on a support group but have since seen it popping up all over the internet. I found it to be quite appropriate for discussion here since there have been many times when comments have been posted about how we should treat women/pregnancies where prematurity (or the threat of prematurity) is involved...

Personally I do NOT agree with what was done to this woman and reading the article brought back horrible memories of when I was admitted to the hospital 11 years ago. My husband and I were sat down and told that once I entered into the hospital at 23.2 weeks (it was the 2nd hospital that I was taken to. The first hospital didn't have a level 3 NICU) that the health of our baby took precedence over everything else and I would not be allowed to leave until I delivered our child. I wasn't even allowed to leave my room unless accompanied by a nurse. I had to beg the doctor to allow my husband to push me outside to get some fresh air and that was only allowed once (after 2 weeks of being in one room). Even though I felt trapped (overwhelmed, scared, angry, sad, depressed, etc) I was willing to stay. But I can't even imagine what it would be like had I really wanted to leave and was legally stopped from doing so.

It Came! It Came!!

2010-01-13T15:33:00.001-05:00

I received the most exciting thing in the mail today and it's not even my birthday.

Stay tuned...

Should the Cost of Saving a Preemie...

2010-01-03T10:09:00.002-05:00

Should the cost of saving a preemie dictate the minimum gestation that a preemie can be resuscitated?

This is such an emotionally charged topic but one that I find very interesting when you take your own personal situation out of your emotions and try to look at it from every angle.

An article in Politics Daily, written by Joann M. Weiner, brings up this subject (in relation to health care reform).

In her article she writes (of an article in the New York Times)...

Writing in The New York Times, Jane Brody told a very compassionate story of an 11-year-old girl who was born after just 25 weeks gestation, weighing only 13.5 ounces, but who is now, amazingly, an accomplished writer and illustrator. Brody did not cite the costs of the child's neonatal intensive care, other than to say that the infant spent the first five months of her life in a Falls Church, Va., hospital. (It is difficult to find data on such costs; one hospital in Rhode Island estimated the daily expense at around $2,000, which means that a five-month stay would cost upwards of $300,000.) The Times article concludes with a comment by Dr. Michele Walsh, a neonatologist in Cleveland, who says that although it is expensive to maintain "million-dollar babies," it becomes very cost-effective over time: "There is a return on investment when they get out into the work force and pay taxes."

That last sentence... that's where I'm stuck. Really stuck.

First off... the cost of raising a preemie can be far more costly than the NICU bill. I know of families who have hit their life time insurance cap before their child was 5. That would have been us had my husband not changed jobs (a job change made necessary because of our insurance issues). Preemies, post NICU, have years worth of specialist visits, therapies, tests, labs, equipment, hospital stays, shots (shall we discuss how expensive RSV injections are), mental health specialists (which is not well covered by insurance and largely paid for by parents) and medications.

Paige is now 11 (born at 25.5 weeks weighing 1 lb 12 oz). I cannot even begin to estimate that cost for our situation but I can tell you that it has exceeded the cost of her NICU bill. For many years she never went a week without seeing a specialist or therapist. After age 5 the weeks turned into months but she still never went more than a few months without having something jabbed into her to run some test. This went on for many years. So, when looking at the cost of prematurity on society, let's not stop adding it all up when they leave the NICU.

(On a side note... On New Years Eve I was sitting at my computer trying to think of something witty to write as my status update on Facebook when it hit me... Paige had not seen any medical specialists in 2009. None. I couldn't believe it. I got up from my computer and combed through the calendar... She saw her pediatrician once (regular kid stuff), had her teeth cleaned twice (regular kid stuff) and had both flu vaccinations (regular kid stuff). That's it. Oh boy did I ever cry. My poor child had endured 11 years worth of appointments (labs, visits, tests, etc) and finally had a break. Although she still has regular appointments with various mental health specialists... there were no medical doctors in her life for an entire year. I know it won't last (as puberty can bring back some of the issues that have subsided) but it was worth celebrating.)

Secondly, what about all of the preemies who will never work? Since the above quoted neonatologist can justify the dollars spent as an investment... where is the return on the investment then?

And to answer my own question... the cost of saving a preemie has never been a deciding factor to me when discussing resuscitation limits based on gestation. But I've been left with a few questions rattling around in my brain now that deserve further consideration.

(I'm going to open up the comments to allow anonymous comments)

Looooong Overdue Update

2009-12-10T21:24:00.003-05:00

I'm not even sure where to begin or if I'll include a full update. Let's just start and see where it takes us...

I think I'll start by talking about homeschooling. It has turned out to be the best thing we've ever done for Paige. If I would have tried to write about it the first year we started, this post would have a completely different feel. It took some time to figure out what homeschooling style was right for the both of us. But, here we are in year 2 of homeschooling and Paige is a completely different child.

To back up a bit... Paige was in public school from age 3 (special ed preschool) through 3rd grade. Intellectually she has never had a problem keeping up. As a matter of fact all of the testing showed that she was consistently scoring a few years ahead in math and at the end of 3rd grade she tested to be at a high school level reading. Socially, though, she was crumbling. Not only does she suffer from OCD and anxiety issues, she is a literal child who is extremely gullible. She was still tattling and never seemed to understand why kids didn't want to be around her. She is such an outspoken child and had no problems speaking up when she felt wronged-something that is not cherished in public schools. Then there is the fact that we are atheists living in the bible belt. When she found out that "under god" was not part of the original pledge (something that she found out on her own) she refused to say it and would stand her ground when questioned. Top all of that with the fact that she was the reason why her class never won perfect attendance (thanks to all of the doctors visits relating to her ongoing health issues) thus giving the kids yet another reason to tease her. She would be in tears virtually every day when I picked her up from school. She felt trapped and I didn't blame her. By the end of 3rd grade the decision to homeschool her came quite easily.

So here we are, year 2 of homeschooling and Paige is thriving medically. She has gained 15 pounds and approx. 4 inches in just over 18 months! My little Paige, who was always under the 5th percentile on the growth charts is 75 pounds at age 11!!! She is rarely sick and her OCD is under control (I'll talk more about it later).

Academically she is still quite advanced in reading and language arts. She loves science and can talk your ear off about history. But, as is the case within the preemie community, she is showing strong difficulties in math. Over the years I had heard other preemie parents talk about how their child was on target in math until they hit 4th grade and this seems to be the case with Paige as well. She is in the "5th grade" but still working on 4th grade math. This is one of the many benefits of homeschooling.

Socially she still struggles. We are starting to feel that she always will. Last year she was in a play, in our local theater, where she played a townsperson. She came alive! She is super animated which came in handy for this years production... Seussical the Musical. She was cast as one of the Whos. She had a blast but still didn't really make any friends. She often makes comments like, "I don't know why no one likes me." Thankfully she has a good friend that live across the street. Their friendship is so important to Paige.

I'm often asked if we'll send her back to school. As of now, the answer would be a strong "no". I am not anti public school. It just wasn't right for Paige. Tyler, on the other hand, can't wait to go. He just wants to ride the bus (what else do 3 year old boys like-lol). I'm not sure what we'll do when he turns 5. He is quite the technology smarty pants for his age. He loves the computer and even has his own homepage, which he can sign into himself. He knows how to get to his bookmarks and knows which games are on what site. He has started to read, can spell his name but can't write it yet. He can count and even do simple addition. He loves to sit near his sister while she is doing school and has picked up so much from their interactions. I'm fearful that he will be bored in school. If he hasn't outgrown his life threatening peanut/tree nut allergy then we probably won't send him to public school.

I am quite passionate about homeschooling so if anyone has any questions, please feel free to ask. While I realize that it isn't right for everyone, it has changed Paige's life for the better.

Medically Paige is doing wonderful. I can't even remember the last time we've seen a specialist. I know she is not out of the woods. Puberty has started and we are watching her like a hawk for signs that her seizures have returned. Since she has gained in both weight and height, we've been cleared by endocrinology. She does still have issues with constipation but now that I'm the one controlling what she eats (and not relying on cafeteria food), it's a lot better. Her headaches have all but disappeared. We have changed pediatricians and finally found someone that took her oral health seriously. Paige has holes in her teeth from acid reflux but since her PH probe was normal, her previous docs ignored the problem. Our new doc was appalled and immediately put Paige on reflux meds which is also helping her stomach aches.

As for her mental health... she is doing so much better. When I look back and re-read old posts I can still feel the pain we were experiencing because her OCD was so hard to control. She is still on 2 meds for OCD and anxiety but now that she is no longer in school the meds are able to help her keep her stress level under control. When new stress is added to her life (like acting) her mental health issues become harder to manage. But, instead of removing the stress, she is able to face it head on and cope quite well. She no longer picks her skin on a regular basis but it is something that she has to work hard on.

As for me... well that's a different story. Now that the majority of the stress (related to Paige's medical/mental health issues) has diminished, I seem to be having a harder time coping. I think the stress was keeping me going. Boy that sounds funny as I'm re-reading it. But I don't have any other way to account for these feelings. PTSD?? I find myself waiting for the other shoe to drop and can't seem to shake that feeling.

Although homeschooling was the best thing for Paige, it ended up altering life in a way that I was not prepared for. My friends had always been the other moms and we got together during school hours. That all is gone now. As I mentioned above, we are atheists living in the bible belt. I have not found a local homeschool group that will allow us to join so I tend to feel a little left out of the world. I'm not completely without friends but it has definitely changed. I still feel strongly that it was the best thing we could have done for Paige and I stand by my decision. I honestly would do it all over again. I just wish people weren't so closed minded so we could share in the homeschool experience with other local families.

So, that's about where we are... in a holding pattern... enjoying life without all of the stress we used to have but keeping both eyes open.

Visiting with Santa

Viability-Through the Eyes of a NICU Nurse

2009-10-01T13:08:00.002-05:00

(an update about us will be coming soon... I promise)

The following post was written by a NICU nurse, who blogs anonymously at Reality Rounds.

Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?

Posted by realityrounds on September 15, 2009

No, it is not. Let me explain. There is an inflammatory article published in the UK Mail Online; Ms. Capewell, a 23 year old mom is claiming English doctors let her 21 5/7 week infant die only because they were following national perinatal guidelines. If only he was born at 22 weeks, she insists, they would have tried everything to save him and admitted him to the Neonatal Intensive Care Unit (NICU). Ms. Capewell, who has had five miscarriages, said the guidelines had robbed her son of a chance of life. She said: “When he was born, he put out his arms and legs and pushed himself over.” The article mentions the 2006 case in the United States were a 21 6/7 week infant, Amillia Taylor, survived after doctors mistakenly resuscitated her, thinking she was actually 22 6/7 weeks gestation. The infant is now two years old and living with her family in Florida. Ms. Capewell states, ‘Thousands of women have experienced this. The doctors say the babies won’t survive but how do they know if they are not giving them a chance?” Following her experience, Ms. Capewell has set up a web page Justice for Jayden urging a change in the British legislation:

The website states:

I had a little baby boy called Jayden on 3rd of October 2008. Sadly I had gone into labour too soon and he was born just halfway through my pregnancy. When I went into labour I was told he would be born dead, disabled and his skin would most likely be peeling off, in actual fact he was perfect. As you can see from his pic he was born alive, he was responsive and lived without help for nearly 2 hours. ReguardleJss of this doctors refused to come and see him let alone consider helping him. This is down to government legislation stating that babies born before 22 weeks are not viable and are not to be helped. Now I’m asking for your help in changing legislation so other families don’t have to suffer unnessisarily.

My heart goes out to this mom who lost her infant and suffered multiple miscarriages. I can’t imagine the pain she must have felt when she lost her child. As a NICU nurse I must disagree with her on her assumptions of care for an infant born with such extreme prematurity. The doctors were just in their actions. It would have been an extreme injustice to Jayden to attempt to resuscitate one so premature. There is a term in medical ethics called Benevolent Injustice. Below is an abstract of an article written by Brenda Barnum, BSN, RN, for Advances in Neonatal Care, that talks about this concept:

There is a little-recognized cohort of NICU patients whose outcomes are the result of a benevolent injustice in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent, and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatology is an unpredictable process and one that is never intended to harm, but carries with it the potential of devastating consequences, thus creating a benevolent injustice.

From reading the UK Mail Online article, and more importantly reading the over 600 comments on this topic, it has made me painfully aware of the ignorance, naivete, and anger the public perception is of caring for infant’s at the edge of viability. Nowhere in the world, including the United States( which arguably had the most advanced technologies when it comes to NICU care), is it routine to resuscitate infants below 23 weeks gestation. In the United States, guidelines for initiating resuscitation vary from 23-24 weeks, and 450 to 500 grams. These guidelines vary by state. Contrary to what Ms. Capewells web page states, it is not “government legislation” that dictates whether an infant born before 22 (really 23 weeks) will be resuscitated and admitted to the NICU. It is the physicians and staff at the delivery. If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.

Infants born at 22-23 weeks gestation have a 1-10% chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95% will suffer profound neurodevelopmental impairment NICHD/NIH. By profound neurodevelopmental impairment, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of being unable to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, never run, etc.

I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.

Ms. Capewell claims her 21 6/7 week preemie was able to “push himself over,” and was “born perfect.” An infant born this prematurely does not have the musculature to expand their chest wall in order to breathe, let alone “push” themselves over. Jayden may have been “born perfect” for a fetus, not for a viable neonate. His eyes were still fused and his skin was gelatonous. He was born too early. We do not have the technologies to save an infant as young as Jayden. Trying to save him would be an experiment in futility. An experiment on an actual human life.

What really struck me most in the UK Mail Online story, was the comments left by readers. Many of them were Americans. They tried to twist this story as a fight against health care reform and that not saving a 21 weeker was rationing care. I will not go into politics here. I will say that comparing not saving a 21 week fetus to rationing health care is a ludicrous argument. It has nothing to do with trying to save money. It has everything to do with humanity, and morality, and justice.

RR
**********

And, as expected, the author received nasty comments, which prompted this post.

I wrote a controversial post about resuscitating infants at the edge of viability……and now, I am paying the price for it. Being a NICU nurse is hard. You could probably tell from many of my posts that caring for infants, especially those with unknown outcomes and prognoses, can be an ethically and emotionally draining experience.

I love my job. I love saving the lives of neonates. I love the skill it takes to care for the most critical of patients. I love being a part of groundbreaking treatments that impact the lives of infants. I love nurturing the tiniest of human lives to slowly grow and blossom and thrive due to my expert care and touch.

Yet to those who do not know, who can not possibly understand, I am nothing but a baby killer.

Because I, with my many years of experience caring for the extremely premature, do not believe that extraordinary measures should be taken to resuscitate infant’s below 23 weeks gestation, I am labeled a heartless baby killer by the anonymous punditry of the internet bloggers.

It is disheartening to think that there are people out there who believe NICU nurses ,who do not advocate that every premature baby be resuscitated no matter the gestational age, are inhumane, insensitive bureaucrats who only think about the reimbursement of a bed space.

For us NICU nurses on the ground, this is a disgusting load of crap to have to hear. Below are some comments left on various blogs and threads regarding my post and how I felt about resuscitating infants at the edge of viability:

“Perhaps we should ask the opinions of some people who were once babies who were preemies and survived and see what they think about the whole business.
I have a feeling they will tell you they don’t remember a thing. And if they do, I am willing to bet they are glad they went through it.
It is all a ploy. Playing on peoples’ fears of pain and suffering to, as Scrooge said, “decrease the surplus population.
I am scared for the future.”

“It sounds to me as if some of you are looking for an excuse not to spend the time, effort and expense on children who “probably won’t make it anyway”. I don’t believe it’s about compassion at all. I think it’s about inconvenience and money.”

“This is just disgusting….he was moving, breathing, and those little bastard doctors did nothing? They should all go to prison for murder and assault on the mom!”

“Some, no, MOST families want to try, and YES we know preemies need a lot of care, at first. So, you and the NICU nurse say set them aside and let them die. Cruel and unethical?Sorry but your extravagant links show the exception and NOT the rule. YOU are cruel and unethical to deny care to these little ones.”

“Sorry it means more work for the doctors and nurses but this is Life at its most innocent and helpless and deserves a chance. We defib flat liners over and over, we try and save life, not set it aside to wither away and die.”
I have dedicated my life’s work to the care of infants. I have invested blood, sweat and tears in the care of infants, including those at the limits of viability. I , like all NICU nurses, have real, hands-on experience of caring for these micro-preemies. We know what caring for these babies entails, and what the outcomes will most likely be. We deserve a voice.

Because the majority of NICU nurses do not agree with the concept of resuscitating any infant born alive, no matter what the gestational age, this does not make us heartless baby killers. It makes us realists. It makes us compassionate. It makes us heroes.

RR
********
Thanks to Kevin MD for posting it on his blog.

Where did that come from?

2009-07-19T08:58:00.004-05:00

I've shed many tears since Paige was born. Through the NICU period, her first few birthdays, milestones, through the feeding issues, after doctor appointments, through procedures, watching her in various stage performances (ballet, piano, gymnastics, plays, etc) and on and on.

Her early birthdays were hard. It wouldn't take much and I would be a ball of tears. Equally as difficult were the years of procedures and doc visits. As soon as she would be safely tucked in bed I would fall apart, thinking how unfair it was that she had been through so much, especially when there was no end in sight.

As the years go by the tears of sadness or tears surrounding the remembrance of struggles come less and less, to the point that they are virtually non existent now. Every once in a while those tears come out of nowhere and catch my off guard.

That is exactly what happened on Friday. I took Paige (and my MIL's hubby) to a health and fitness expo. Paige loves any and all things medical so I thought it would be a great experience for her and a wonderful homeschool opportunity as well. What I was not prepared for was the fierce emotions that would literally take my breath away and leave me scrambling to hide my tears from Paige. What caused this reaction? I managed to snap one picture before I had to stop and try to regain some composure.

Right before I took this picture I turned to my MIL's hubby and said, "Wow, doesn't that bring back memories?" as we were looking at the monitor (on the left in the pic). I swear I was transported back into the NICU. I felt sick. I felt the tears coming so I opened my eyes real wide, hoping to dry them out quickly. I kept telling myself to breathe but it wasn't working. The background noise started to sound muffled and my lips were tingling. Then it hit me; I was in the beginning of a panic attack. Geesh! 10 1/2 after the NICU and it came back that easily. Even as I am typing this post, the tears are there.

I was able to regain composure in enough time to actually listen to Paige asking such wonderful questions to the doctor that was operating the Simm baby. When she asked, "Is the blue light coming out of the baby's mouth supposed to signify lack of oxygen?", I almost lost it all over again. But, then the doctor praised her for her question and she turned to me with this bright, proud smile and I proudly smiled back, giving the thumbs up.

The best part was that Paige never realized what had happened to me.

Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months

2009-07-15T15:07:00.004-05:00

**After talking with Helen, I have decided to make a separate post out of this study, which Helen cited in the comments of the previous post, as to make sure it doesn't get lost in another topic.**

Helen Harrison writes:

I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.

[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]

This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.

"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.

This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.

This is, as many of us have learned the hard way, highly misleading.

So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.

We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.

Here's what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).

From 501 to 600 grams it is about 5% unimpaired;
701-800 grams about 15 % unimpaired ;
increasing to 24% for infants 901-1000 grams.

By gestational age: <1% at 23 weeks are unimpaired;
< 5% at 24 weeks;
about 15% at 25 weeks, and
about 24% at 27 and 28 weeks.

(I'm reading some of this from a graph so I can't cite exact percentages.)

After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.

Thoughts From A Pregnant Preemie

2009-07-11T14:32:00.003-05:00

Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.

From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely.

I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.

I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.

It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.

On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.

Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.

I’m currently in my 26^th week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.

I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.

When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.

Susan

**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**

Thank You

2009-07-08T07:14:00.003-05:00

Over the past few days I've typed and re-typed this blog post many times. I can't seem to find the right words to say what's on my mind and in my heart.

I have appreciated all of the emails that I've received. See, even that isn't sounding right. Appreciated? Does the meaning of that word really convey what I'm feeling? Is the word strong enough? I hope so.

I had always hoped that this blog would help someone that needed to not feel alone; someone who may be wondering why their child had not caught up and they were beyond the magic age of 2 or 3 or maybe someone who was dealing with raw emotions that were scary. But, the blog went way beyond my expectations which became evident by the number of emails I have received since going on hiatus.

Thank you.

Simple words-are they strong enough? There I go again. I'm not going to try to find any other words or else this post will never reach the blogosphere.

Thank you to everyone who has written to me. Please don't take my lack of response as a lack of appreciation. Please. I've run through a gamut of emotions and needed to let it all soak in. I am so thankful that the blog has helped so many and I still read those wonderful emails when I need to be reminded that there are good people out there.

What I was not prepared for when I started this blog was the anger and negativity that would be directed toward me and those who comment here. My skin has thickened over the past 2 1/2 years of blogging with each and every insult and rude comment that was thrown at me. But, that thickness becomes paper thin, still to this day, when the attacks are directed at others. It was easy to walk away from blogging to avoid that gut wrenching emotion that takes over my entire being when people start being nasty to each other.

Easy to walk away... yes. Easy to stay away... no.

I will be posting an entry from a guest blogger in the next few days. It was her story that brought me back to blogging. I am asking everyone to keep an open mind. Not many of my readers can say they have ever been in her shoes-not completely. You'll see why. Her words are important. Every parent of a preemie, especially preemie girls, should read her words carefully. Every pregnant woman should take note. Above all else, I am asking that everyone be kind to her. There will be topics in her post that warrant further discussion which I will gladly make a separate post so the drama will stay separate. I will not allow drama to be thrown her way!

Goodbye For Now

2009-05-18T15:40:00.003-05:00

After watching the video that TPD posted (which has been removed) on my blog, which I feel is a serious threat, I am going to stop blogging for the time being until I can figure out what I want to do.

It's a sad day for me. Over the past 2 years I have received so many emails from people who have been helped by this blog. I have made some wonderful friends as a direct result of this blog as well.

It took one jerk to ruin it all.

Thank you to everyone who has been with me through it all.

Helen, I am so very sorry that this happened to you! Thank you for all that you've done for us parents over the years!

Moving On

2009-05-18T14:43:00.004-05:00

After cutting through all of the bullshit (sorry-I'm in a mood), it seems that most can agree that resuscitation should be a personal choice. Agreed?

Ok.

If the conversation was to end there, most would be able to take a deep breath and go on discussing the long term impacts of prematurity and how they may affect ones life and the lives of the family.

Wait. Then we'll get stuck because some people don't like the way the statistics are compiled. Some believe that it doesn't tell a whole story and some believe that certain issues shouldn't be considered a disability.

So, we argue about statistics and we move on.

Wait. We'll get stuck again because some people don't like it when parents discuss how hard life can be. For some reason an open discussion of our daily lives leads some to think that you don't love or value your child.

Ok.

We'll all change and start only talking about the happy, happy, joy, joy parts to our lives. Would that make everyone happy? We'll all just stop talking about the long term issues that our kiddos endure or will face in the future. No more honesty.

Guess what? The issues will still be there. Our kiddos will still have seizures, constipation, mental health issues, CP, blindness, social issues, intellectual difficulties, etc. Marriages will still fail. Families will still struggle financially. Parents who were told that there child will catch up by age 2 or 3 will be wondering how they failed their child because he/she is still behind.

Our silence will solve NOTHING! Does it mean that we love our children any less because we openly discuss the issues? I'm still baffled why people think it will. I love my children, with all of my being. I've devoted my life to them and their happiness. (if anyone doubts this... try homeschooling your own child and you'll see how much I love Paige-lol) Just because I talk about how prematurity has affected all of us, does NOT mean I love her any less!

I don't mind the argumentative nature of the comments but what I cannot stand is the nasty bickering.

We will all disagree at times. Get over it. State your point and move on.

As for attacking Helen. She is merely the messenger. You may not like what she has to say but she backs it up with statistics, none of which she compiled. She is merely the messenger!

The Financial Impact of Prematurity-In The Media

2009-05-14T18:38:00.004-05:00

Some of the on line preemie support groups, and various blogs, have been turned inside out this past week due to some recent media coverage of a few preemies.

First up... The Freemans. They were featured on a recent episode of The Doctor's. Their blog (seems to be mostly authored by Dad) is quite popular among preemie blogs. Kayleigh was born 3 months early in June of 2008. The show featured their story due to the financial impact that prematurity has played in their lives. They were doubly hit when the economy crashed and they were on the verge of losing their home. Many of us have been in that situation. I've been very open about our financial hardships, beginning with the NICU bill that was not covered by insurance and continuing for the past 10 1/2 years of medical bills due to on going care. Their story is NOT unique.

So why the buzz in the preemie world? Well, they used their blog to solicit donations all the while never disclosing how the money was being used. Some have commented that they never sent thank you's after they've received said donations. I am not one of those who donated so I don't feel qualified to comment on any of the above.

What I do know is that many of us are one more procedure away from being completely broke. Unlike decisions we make on our own medical care, as parents we cannot chose to withhold a medicine or a procedure because we cannot afford it. They are our children and we do everything we can to improve their quality of life.

I think the frustration in the preemie world over this family is that "their story" is "our story" too. Many of "us" need help but no one is beating down the door and tossing cash our way. Some people felt that the family was still spending money on extras (getting nails done, etc) and they shouldn't be doing so since they were receiving donations. (Since I don't know how those extras were paid for I also won't be commenting on it)

Some states have wonderful resources such as SSI and medicaid. But what about those who live in states where income is used to determine if you qualify? What about those who live in states without waivers? What about all of the bills incurred after the NICU? Co pays? Medicines? Living on one salary because your preemie cannot be in day care? It all adds up.

All in all the show did a fairly good job of showing what life is can be like for people without insurance (or under insured) when a crisis hits.

At one point Dr. Sears talked about a late night encounter he had with a father in the NICU. The father was questioning whether or not it was all worth it.

"I know as doctors and pediatricians we try to do everything we can do for these little babies but sometimes we forget what happens outside of the hospital, what the cost can be for the whole family. This reminds me of a story. I was spending the night in the neonatal intensive care unit with a family a few years ago and very similar situation as your guys (pointing to the Freeman's). The baby born 3 months premature, barely over a pound and you know, the child was only a few weeks old and had all of these procedures and surgeries. The dad came in in the middle of the night and we were sitting there together and the dad just kind of broke down and he said, "You know, is this going to be worth it? You know I don't know if we can pay for all of this." and seeing their little baby go through all of these things and not knowing and probably even doubting if there is even going to be a good end to all of this. It's just really tough."

At that point I held my breath. He seemed choked up, like he really wanted to say what was on his mind. But it ended there and I let out a sigh. Although it wasn't the right time for that kind of discussion (being that it was a show on insurance), I really wanted to hear what was on Dr. Sears' mind.

As for Kayleigh... she passed away on May 11th, having never left the NICU. You can read her blog here... http://kayleighannefreeman.blogspot.com/

Next up (in a few days) will be a post about the People Magazine article on the 6 micropreemies. Please hold the comments until then as I'm sure you all will have a lot to say once you hear what I have to say.

Stacy, where are you?

2009-05-06T14:22:00.003-05:00

Lately, I've gotten a few emails asking that very question. They coincide with facebook posts to my wall asking, "what happened to TPE?"

First, I need to apologize to those who I have not responded to. I am reading my emails and appreciate every one's concerns. I'm so thankful for everyone who follows this blog and I don't want my absence to convey a different message.

Second, an explanation is warranted. Part of the reason for the lack of posting can be attributed to the fact that homeschooling takes up most of my free time. In the near future I'll be devoting a post on the subject of homeschooling and we can all discuss that further.

Another reason why I haven't been chatty on the blog is due to the stress of our current situation. Both hubby and I have been bit by financial and medical issues that sucked the energy out of me.

But in all honesty, the biggest reason for my absence is the sadness I have been feeling with regard to the world of prematurity. I am an optimist and can be found looking for the bright side or upswing in every situation. I'm always looking for the study or the report that shows promising information in regards to outcomes. They aren't there. This past month, within the preemie community (bloggers and people on the on line support groups) the sadness was overwhelming. We saw the death of older children due to complications from their early birth. Other parents were left wondering how this could happen, thinking that their child was safe once they were out of the NICU. Pregnancies ended early and resulted in parents making decisions to not resuscitate. New preemie parents are joining the groups in record numbers. Parents of toddlers are wondering what they may have done wrong because their child did not catch up by age 2 (like they were told in the NICU). Parents of older children are realizing that their child will not be making the recovery they had held out hope for. Children receiving diagnosis's of CP was more than some parents could handle. Marriages are falling apart due to the stress of having a child with special needs.

Is this past month any different than all of the months in the previous 10 years since Paige was born? No. And that is what has me down. Day after day, month after month, year after year the cycle continues. What has been learned from all of early births? Why are statistics not improving? There are times when it just gets me down.

I will be back soon. I just need time to recover. I started to feel that there was no use to continue this blog. I have changed nothing. (pretty sad that I thought I could actually make a difference when the problem is so huge) Then I realized that there is still so much I have to say. I started this blog because I was outraged at the fact that parents were being told that their preemie would catch up to his/her peers by age 2 or 3. Those of us in the trenches know this is not true and I feel, now more than ever, that something needs to be done about this. There are still parents blaming themselves for the outcome of their preemies. This should enrage you all as it does me.

Thanks again to all of you who have written to me to ask, "Stacy, where are you?" I'll be back soon and with the help of all of you, we will once again bring light to the subject of the long term issues related to prematurity.

Adult Preemies Needed for Research

2009-04-05T14:23:00.004-05:00

I received an email from an adult former preemie asking if I wouldn't mind posting a request on my blog. Not only do I not mind, I am grateful to see research being done into BPD and honored to help in any way that I can.

Let's help him out... pass along the info to any adult preemies you may know. Please note... they are looking for former preemies even if they do not have BPD.

****

Hi Stacy,

My name is Steve Laurie and I got your name and contact info from Helen Harrison and wanted to email you and introduce myself. My twin brother (Tim) and I were born at 25 weeks back in 1980 and have miraculously survived with few complications due to the prematurity. I am now a graduate student at the University of Oregon studying lung function and one of the aims of our lab is to look at adult survivors of bronchopulmonary dysplasia. This follow-up work has not been studied and we are interested in the lung function of these individuals.

We are currently recruiting subjects to participate in our study (see attached flier) and would like to see if is possible to post our flier on your site. I am also trying to send an email out through the former preemie yahoogroup.

Please let me know if this is something we could do or if you have any questions regarding what we are doing, how we are doing it, what we hope to accomplish or even just questions about my story as a preemie.

Please do not hesitate to contact me via either email or phone, I look forward to hearing from you.

Thanks so much,
Steve

--
Steve Laurie
Department of Human Physiology
University of Oregon
Eugene, OR 97403
slaurie@uoregon.edu
541-346-0822 (lab)

******

I then asked Steve to comment on his outcome with regards to his own prematurity. Here is his reply...

****

Hi Stacy,

Thanks for the reply! Our lab has a number of things we work on surrounding lung function, some dealing with preemies, other aspects that do not. Currently there are three grad students in my lab and while we each have a project that is "ours" that we each head up, we all work together on all of the projects. Technically speaking, the preemie project is not mine, although all that really means is that when it comes to the contact person it is Ximeng (pronounced Simon), who sits right next to me in our office :) That being said, I obviously have a keen interest in the success of the project and so am doing whatever I can to get it up and running. Once the actual data collection begins, we all contribute to all the projects because they are such an undertaking.

Additionally, we are working on putting together a study to look at lung function of preemies that are still kids (5-15 years old) and see if putting them onto an exercise program can help their lung function before going through maturity. This project is still waiting for approval from our human subjects committee, but as that develops, I will let you know.

I'm not sure how much information is given out to parents regarding lung function of their preemies, but I can give you a brief idea of what we are interested in. Basically, with the advent of surfactant in the early 1980s (my brother and I were some of the first to get it) it has dramatically helped the long term lung function of these kids. However, as the lung is not completely developed when these kids are born, it finishes it's development while these kids are on oxygen and it is the high oxygen levels that actually stunt the lung's growth and consequently limit their overall lung function later in life.

My brother Tim and I were born in 1980 at Children's Hospital in San Francisco (see The Premature Baby book by Helen Harrison, we're in there) - I was 2 lbs even, Tim was 1 lb 16 oz. I remember growing up and going back for follow-up appointments until we were in our early teens and remarkably, we have nothing wrong with us. I think a lot of it is luck for being born at the hospital we were at; I know our parents said they were signing experimental treatment forms on a weekly basis! Actually, the only thing we do exhibit that is abnormal is that our lung function is slightly compromised due to the high levels of oxygen we were on while in the NICU for 3 months after being born.

I graduated from UC Davis in 2004 with a degree in exercise physiology, my brother from Loyala Marymount University with a degree in television production. I am actually a long distance runner and was a 2x All-American while in college, but have since moved up to the marathon where I just missed qualifying for the US Olympic Trials in 2008. I hope that parents of new preemies can see how lucky my brother and I have been and maintain hope that their preemies, despite the odds against them, can turn out healthy and have extraordinary lives too.

****
Here is the flyer that was attached...

Classroom and On-line flyer

Subject Recruitment

Paid Pre-term Research Subjects Needed.

Study population:

Healthy, non-smoking males and females age 18-49 yrs. Subjects born preterm (<32 weeks gestational age) with or without Bronchopulmonary Dysplasia, males and females age 18-49 yrs.

Study description:

This study is designed to examine long-term heart, lung and breathing outcomes resulting from preterm birth. It will be conducted over the course of 4 visits. First visit will involve resting saline contrast echocardiography to examine your heart, an array of lung function tests, and a VO _2maxtest. Second visit (for study population only) will test your lung function before and after administration of a fast acting bronchodilator. Third visit will involve total lung volume measurements, breathing gas mixtures with varying concentrations of oxygen and carbon dioxide, and a lung diffusion capacity test. The final visit will involve two exercise tests breathing different levels of oxygen, arterial blood samples and saline contrast echocardiography will be performed to examine heart and lung function.

Relevance to subjects born premature:

It is our hope that this study will provide a fundamental understanding of the long-term heart and lung outcomes of premature birth.

Study Location:

The study will be conducted in the University of Oregon, Department of Human Physiology, Cardiopulmonary and Respiratory Lab, located on the 2nd floor of the Center for Medical Education and Research Building (722 E. 11th st.) on the Sacred Heart Medical Center campus.

Subjects will be compensated for participation in this study.

If interested, please contact

Ximeng Yang B.S.

xyang1@uoregon.edu (541) 346-0822

Andrew Lovering Ph.D

lovering@uoregon.edu (541) 346-0831

Department of Human Physiology

1240 University of Oregon 122 Esslinger Eugene OR 97403

Paige Wonders....

2009-03-31T14:16:00.003-05:00

Paige: "Mom, I've been thinking about what kind of doctor I want to be. What kind of doctor deals with the most blood, guts and bodily fluids?"

Me: "A nurse"

Sending love to all my nurse readers out there! lol

A few minutes later Paige comes out and tells me she wants to be a surgeon. This isn't the first time we've heard her say this. We always try to balance our answer with reality (she has very mild CP and shaky hands) while not squashing her drive.

"Well, maybe I'll stick with my original idea and create a preemie doctor field."

You do that sweetie!!

ABDUCTED CHILDREN

2009-03-26T09:45:00.006-05:00

****Update March 30, 2009**** First I want to thank everyone who took a moment to look at the pictures of Jack and Duncan. The boys were found but sadly they were not found alive. There are no more details at this time.***

While the majority of the posts on my blog are dedicated to prematurity (with the occasional teasing of my husband), this blog post will be dedicated to 2 children who are missing.

Their family needs your help.

Please take a moment to look at the information and study the pictures. Please do NOT assume that you won't be able to help because of the location of the abduction. Many abducted children are taken far away from the point where they were taken. Also, just because these boys were taken by their father, please do NOT assume it is not as serious as a stranger abduction.

If you would like to help, you can print posters from the following link:
National Center for Exploited and Missing Children

For more information you can visit:
http://www.myspace.com/helpfindduncanandjack

If you are on Facebook you can join the group

"the official bringing jack and duncan connolly home safe group"

If you have any information, no matter how small, please contact

The National Center for Missing and Exploited Children at
1-800-843-5678 (1-800-THE-LOST)

Family Abduction

DUNCAN CONNOLLY

DOB: Oct 17, 1999
Missing: Mar 8, 2009
Age Now: 9
Sex: Male
Race: Asian
Hair: Brown
Eyes: Brown
Height: 3'6" (107 cm)
Weight: 66 lbs (30 kg)
Missing From:
BLOOMINGTON
IL
United States

JACK CONNOLLY

DOB: Apr 10, 2001
Missing: Mar 8, 2009
Age Now: 7
Sex: Male
Race: Asian
Hair: Brown
Eyes: Brown
Height: 3'4" (102 cm)
Weight: 62 lbs (28 kg)
Missing From:
BLOOMINGTON
IL
United States

MICHAEL CONNOLLY

Abductor
DOB: May 20, 1968
Sex: Male
Race: Asian
Hair: Black
Eyes: Brown
Height: 5'8" (173 cm)
Weight: 175 lbs (79 kg)

Duncan and Jack were allegedly abducted by their father, Michael Connolly on March 8, 2009. A felony warrant for Kidnapping was issued for Michael on March 9, 2009. They may still be in the local area or they may travel to Hoffman Estates, Illinois in a grey Dodge Dynasty with license plates A326109. The photos shown above are a representation of what the vehicle may look like. Michael may go by the alias name Gung Yer Lee.

ANYONE HAVING INFORMATION SHOULD CONTACT
National Center for Missing & Exploited Children
1-800-843-5678 (1-800-THE-LOST)

LeRoy Police Department (Illinois) 1-309-888-5030

Paige's Knowledge of Her Own Medical History

2009-03-11T20:55:00.004-05:00

Over the past 2 years we've covered the topic of "how much should you tell your preemie about their medical history" a few times. I believe it's a personal decision but with Paige we have made her a part of her own care since day one. She has heard her medical history countless times and can pretty much repeat it on her own. She knows her current meds including dosage. We never drilled this information into her head. She has just heard it so many times that it is 2nd nature.

If you would like to read the previous blog posts/comments on this topic, you can do so here and here.

Recently we changed doctors from a family practice doc to a pediatrician. I filled out all of the paperwork ahead of time (it's not a simple task when you have a preemie) and was less than thrilled when the doctor proceeded to ask all of the same questions that I had answered on the extensive paperwork. I was answering them as cheerful as possible, as to not start off on a bad note with the new doc, when Paige spoke up...

"Wait Dr. XYZ, I do have an allergy to medicine. Mom, why did you tell her that I'm not allergic to anything?"

I tried to hush Paige with the usual finger to the mouth but it didn't work.

"Mom, duuuuuh! I can't believe you missed something! hehe" (she always thinks it's funny when she realizes that I have made a mistake-loves to rub it in my face too-lol)

I shot her the glaring eyed mom look and then put my finger up to my mouth to hush her again. I figured she was talking about a reaction she had to a seizure medicine where she lost the ability to walk and see colors-after only one dose. "Paige, your reaction to the carbamazepine was due to an overdose on the doctors part. It was not an allergic reaction."

I looked up at the doctor, still trying to smile through the questions that I've already answered.

"Mom, I'm seriously allergic to Omnicef! DUH! Remember my full body hives? Remember those steroid shots I needed? Remember the doctor telling you to make sure I never have any 'cillins'? Remember Mom? " She then breaks out into hysterical laughter, turns to the doctor and says, "Maybe you better ask me the questions from now on."

At that moment I was reminded of why we have always included her in her care. I was proud of her (even her snarky attitude-lol). I watched, in awe, while she answered the rest of the questions on her own (completely accurately I might add). She is such an amazing child!

I beat myself up over the fact that I forgot such an important bit of information. My facial expressions must have made it obvious too because the doctor leaned over, patted my shoulder, and said, "It's ok. You taught her well."

Ok, yes I learned a lesson. Asking those questions, despite the fact that I had answered them already on the intake form, was a good thing. I will never complain about that again!

Hemangiomas and Prematurity

2009-03-04T14:24:00.002-05:00

Over the years I've seen discussions on preemie support group sites about hemangiomas. Since this is not a condition that my children have ever dealt with, I never bothered to research it. (I do remember there being a few preemies in the NICU with Paige who also had hemangiomas.)

Recently I noticed that someone found this blog while searching for information on "hemangiomas in preemies". While I found it interesting that there may be a correlation, I never put much thought into it.

Today I was reading a friends blog and there it was again... the topic of hemangiomas (and the use of propranolol). I was surprised to read that they are common in premature infants.

I was even more surprised when I set out to investigate a bit further. There are many journal articles out there on the correlation between prematurity and hemangiomas.

Here's one on the possible association of hemangiomas and ROP...
http://pediatrics.aappublications.org/cgi/content/abstract/peds.2007-0803v1

Here's an article about the possibility of hemangiomas being linked to low birth weight...
http://healthlink.mcw.edu/article/1031002941.html

I know this information probably comes too late for the person who found my blog while searching for info on hemangiomas and prematurity but I thought I would still put it out there in case anyone else needs it.

Impact of Postnatal Corticosteroid Use on Neurodevelopment at 18 to 22 Months' Adjusted Age:...

2009-03-02T07:57:00.002-05:00

Impact of Postnatal Corticosteroid Use on Neurodevelopment at 18 to 22 Months' Adjusted Age: Effects of Dose, Timing, and Risk of Bronchopulmonary Dysplasia in Extremely Low Birth Weight Infants

Deanne Wilson-Costello, MD^a, Michele C. Walsh, MD^a, John C. Langer, MSc^b, Ronnie Guillet, MD, PhD^c, Abbot R. Laptook, MD^d, Barbara J. Stoll, MD^e, Seetha Shankaran, MD^f, Neil N. Finer, MD^g, Krisa P. Van Meurs, MD^h, William A. Engle, MDⁱ, Abhik Das, PhD^b for the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network

^a Department of Pediatrics, Case Western Reserve University, Cleveland, Ohio
^b Department of Statistics, Research Triangle Institute, Research Triangle Park, North Carolina
^c Department of Pediatrics, University of Rochester, Rochester, New York
^d Department of Pediatrics, University of Texas Southwestern, Dallas, Texas
^e Department of Pediatrics, Emory University, Atlanta, Georgia
^f Department of Pediatrics, Wayne State University, Detroit, Michigan
^g Department of Pediatrics, University of California, San Diego, California
^h Department of Pediatrics, Stanford University, Palo Alto, California
ⁱ Department of Pediatrics, Indiana University, Indianapolis, Indiana

OBJECTIVE. Postnatal steroid use decreases lung inflammationbut increases impairment. We hypothesized that increased doseis associated with increased neurodevelopmental impairment,lower postmenstrual age at exposure increases impairment, andrisk of bronchopulmonary dysplasia modifies the effect of postnatalcorticosteroid.

METHODS. Steroid dose and timing of exposure beyond 7 days wasassessed among 2358 extremely low birth weight infants nestedin a prospective trial, with 1667 (84%) survivors examined at18 to 22 months' postmenstrual age. Logistic regression testedthe relationship between impairment (Bayley Mental DevelopmentalIndex/Psychomotor Developmental Index of <70,> palsy, or sensory impairment), total dose (tertiles: <0.9,0.9–1.9, and 1.9 mg/kg), and postmenstrual age at firstdose. Separate logistic regression tested effect modificationaccording to bronchopulmonary dysplasia severity (Romagnolirisk > 0.5 as high risk, n = 2336 (99%) for days of life4–7).

RESULTS. Three hundred sixty-six (16%) neonates were steroid-treated(94% dexamethasone). Treated neonates were smaller and lessmature; 72% of those treated were at high risk for bronchopulmonarydysplasia. Exposure was associated with neurodevelopmental impairment/death.Impairment increased with higher dose; 71% dead or impairedat highest dose tertile. Each 1 mg/kg dose was associated witha 2.0-point reduction on the Mental Developmental Index anda 40% risk increase for disabling cerebral palsy. Older agedid not mitigate the harm. Treatment after 33 weeks' postmenstrualage was associated with greatest harm despite not receivingthe highest dose. The relationship between steroid exposureand impairment was modified by the bronchopulmonary dysplasiarisk, with those at highest risk experiencing less harm.

CONCLUSIONS. Higher steroid dose was associated with increasedneurodevelopmental impairment. There is no "safe" window forsteroid use in extremely low birth weight infants. Neonateswith low bronchopulmonary dysplasia risk should not be exposed.A randomized trial of steroid use in infants at highest riskis warranted.

**As published in the March 3, 2009 Journal of the American Academy of Pediatrics***

Tears of Sadness-Tears of Joy

2009-02-25T21:15:00.012-05:00

The past 24 hours has been incredibly emotionally draining for me. Yesterday was bad. Really bad. The fear of what the future will hold for my child is overwhelming at times. I fear what will happen when I am not around to protect her from herself. I am not a person who cries much. There hasn't been time for it. I made up for lost time last night. Thank you to all of you who reached out to me via the blog, email and Facebook.

The morning came quickly. Opening my eyes and facing the day was difficult today. I wondered what kind of mood Paige was going to be in and was formulating a plan on how to handle her when I heard her getting up. She came in to my room, rubbing the night out of her eyes and skipping.

"Mom, I am really sorry for last night. I don't know what was the matter with me. Thank you for checking on me during the night."

It was a new day for her and she was happy. The night had healed her spirit. For this I was thankful but was left wondering why the night hadn't healed my spirit.

I put on a brave face and started the day knowing what was coming... and ice skating field trip.

For those of you who need to catch up... Paige's eye doc told us to not allow her to do any sports where she might hit her head since she is at risk for retinal detachment. When the field trip came up, I was hesitant. It was a big risk in my opinion but after talking to several people, it was brought to my attention that I may be a tad neurotic. I decided to take her.

For weeks Paige has been looking forward to ice skating. She had never tried it before but was so excited that she couldn't wait to get out of the house. She was sure that she would master the skills she needed, in a matter of one day. I tried telling her how hard it was. I used to skate and understand the frustration that comes with learning how to stay perpendicular to the floor.

Not only was I worried about her eyes, I was worried about her self esteem. Her legs are not strong. Her ankles are not strong. Geesh... we are talking about a child with mild CP after all.

We dropped off Tyler at Grandma's and headed to the rink.

I tried giving her a pre-skate pep talk which involved the usual parent gibberish. "Now don't forget that you've never done this before. You are going to fall. A lot. But, please be proud of yourself for trying. I'm proud of you already."

"Mom, I had a dream last night that I could skate well. It is giving me inspiration."

Gulp

We ate a yummy lunch at the rink before skating.

The skates are on!

First steps on the ice

I took this video with my digital camera and the battery was dying (I think that's why the audio doesn't match with the video). This was 20 minutes into skating.

Then came my tears of joy. Watch her face! She is so excited!! I stood on the side sobbing. And yet again, it was an ugly cry. hehe I was finally relaxed and happy with my decision to allow her to go skating. I fought the neurotic preemie parent side of my brain and I was glad that I had!

Be sure to watch the very end to see what happened.

Yes, my worst fear was realized. She hit her head! She freaked out. I almost threw up. She proceeded to scream for what seemed like an eternity. When she calmed down a bit I asked her if she was crying because she was really hurt or because she was afraid for her eyes. Her response (given through increased tears), "I'm afraid you are going to make me leave!" That's my tough cookie!!

She ended up skating and falling for the next 90 minutes. She was awesome! She had a blast and left feeling on top of the world.

Oh the tears sure have been flowing over the past 24 hours. I'm just thankful that, for today, they were tears of joy!

"You're Lucky"

2009-02-24T21:26:00.003-05:00

Whenever people hear that Paige has escaped some of the big medical long term impacts related to prematurity I hear, "you're lucky".

Well tonight I am sitting in my room crying.

Paige is in her room crying.

Freaking out.

Screaming.

The meltdown started at bedtime and is still going on. She lost it. She is having thoughts that the police are going to come take her away. I don't even know where she got that thought from. She just came in my room, screaming at me that she is having thoughts that her brother, father and I are going to die. This hasn't happened in such a long time.

I can't hug this away. I tried tonight. Believe me I tried. She cries harder.

So, to all of you who think we are so much better off because prematurity did not leave it's mark on Paige's lungs or her muscles or her intelligence. Think again.

My baby is suffering right now and I can't fix it.

I don't feel so lucky right now.

Doctors

2009-02-17T16:38:00.004-05:00

In the 10 years since I've become a parent, I have not managed to learn how to co-exist with Paige's doctors.

I try.

I try really hard actually.

Meeting new docs/specialists usually causes great amount of stress for me. I go into the appointment with an open mind. I try to remember that my knowledge may come across as arrogant. I don't mean to come across that way. I also realize that my skeptic nature comes out, no matter how hard I try to hide it.

It's not that I think that doctors are not capable of treating my child; there are many intelligent doctors out there. Unfortunately, I haven't come across too many that have experience with preemies and the long term issues that plague them. Most all of them have either dismissed our concerns (only to be wrong later) or are surprised when they see how intelligent Paige is and then they decide that "she looks too good to have any issues.".

For the past 2 1/2 years we have been using a GP, for all of us. Without getting into too many details, we are changing docs and the kids will now be seeing a pediatrician. I need to set up an appointment to meet this new doc, before I bring in the children.

I will, once again, try to close my mouth and smile. I'll try hard. I will try not to show how jaded I've become and try to give this new one a chance.

I'm already stressed about it and I haven't even made the appointment.

Impact of Postnatal Steroids...

2009-02-10T07:27:00.006-05:00

Impact of Postnatal Corticosteroid Use On Neurodevelopment at 18 to 22 Months' Adjusted Age: Effects of Dose, Timing, and Risk of Bronchopulmonary Dysplasia in Extremely Low Birth Weight Infants

OBJECTIVE. Postnatal steroid use decreases lung inflammationbut increases impairment. We hypothesized that increased doseis associated with increased neurodevelopmental impairment,lower postmenstrual age at exposure increases impairment, andrisk of bronchopulmonary dysplasia modifies the effect of postnatalcorticosteroid.

CONCLUSIONS. Higher steroid dose was associated with increasedneurodevelopmental impairment. There is no "safe" window forsteroid use in extremely low birth weight infants. Neonateswith low bronchopulmonary dysplasia risk should not be exposed.A randomized trial of steroid use in infants at highest riskis warranted.

***I never know what I am allowed to post, legally. So I am only posting the objective and conclusion. If you click on the title it will take you to the abstract. I don't have access (can't afford-lol) to the entire article.

What I find interesting in the Conclusion is the statement, "There is no "safe" window forsteroid use in extremely low birth weight infants."

Too Much Praise-Revisited

2009-02-08T09:57:00.002-05:00

It's been a year and a half since I posted this topic. We are still dealing with it in our house, now more than ever. I thought it was worth revisiting.

Too Much Praise?

Every so often the topic of "are we praising our children too much?" comes up in the media. I used to turn my nose up whenever I heard/read about the new studies. Too much praise? Is that even possible?

Older and wiser.... gotta love life's little lessons.

When Paige was born and we had to constantly work with her to reach even the smallest of milestones, praise was dripping from the walls in our house. We would encourage and bribe her to get through therapy and all of the "homework" that hubby and I had to do with her. When she would even barely respond, we would praise the heck out of her.

When she got a little older and started to work on large motor skills (crawling, standing, etc), more and more praise would be needed to get her going.

Then came speech. Even more and more praise was needed.

Fine motor skills.... "Oh Paige, that is the most beautiful purple scribble picture I have ever seen."

She needed the praise and we had no problems giving it to her. I used to think to myself, "those studies only apply to typical kids. What harm could there possibly be in giving her praise?"

Well, we've created a praise junkie.

We realized this a few years ago but had no idea what to do about it. We still don't. Something has to be done though. lol

She is finally trying to learn how to ride a bike without training wheels. If you live on our street, you already know this. Actually, if you live in our town you already know this. She can be heard screaming with frustration from miles away. She has been working on for quite a few nights now.

After a particularly hard night of trying, she was finally able to push one pedal and then get her second foot onto the other pedal. Then she freaked out because both feet were off the ground. But, she was so incredibly proud of herself, and so were we. We clapped along with her and told her "great job trying!"

The next morning she asked me "Are you proud of me?", to which I responded, "You did a good job last night getting both feet on the pedals. I know how hard that was for you." Paige's response, "Good? That's all I get, just the word 'good'? Wasn't I just the greatest you've ever seen?" After we went back and forth about how being 'good' meant something special and how we were so happy to see how proud she was for herself, she just stormed off yelling something about me not understanding how hard it was to ride a bike and how I should have told her that she was the greatest. Geesh.

The same sort of conversation can be heard after artwork too. She will say that she is going to color something, sit and scribble for 2 minutes and then expect us to call her Van Gogh. Now we just say things like, "I love all of the colors you used." or "Can you tell me what you were thinking about when you were creating this?" It's never good enough and she will say things like, "don't you like what I've made?"

She is attending art camp this summer, taught by a very accomplished artist (who also happens to be her piano teacher). After picking her up last week she told me that she is upset with Mrs. X because Mrs. X wouldn't let her do the art piece the way she wanted to. She went on to tell me, "Mrs. X said that some types of art are not open for free expression and have to be aesthetically pleasing to ones eye. Well it was pleasing to my eye but she refused to tell me that my art looked great. I don't like art camp anymore!" Oh boy.

If I could go back in time, I am not sure what I could do differently with that little girl who needed so much encouragement and praise to reach her milestones.

But I know one thing, I would have wiped my praise dripping walls sooner to avoid the hurt feelings she is experiencing now.

***** 7/26/07 UPDATE*****

Paige can now ride a bike!! Woo Hoo!! Hubby figured out that she was always starting from a dead stop. He told her to start rolling first and then put her feet on the pedals. It worked like magic. We took her to an empty parking lot and let her ride for a while tonight. She is so proud of herself. That's the best part! I love seeing her truly happy. I still have tears in my eyes as I type this. What a big day!!!

****** 2/8/09 UPDATE*****

The constant need for excessive praise has not diminished. Now that we homeschool, the issue is in front of us daily. If she completes a math problem correctly, she expects me to jump up and down in a fit of pure joy. Me telling her, "good job" is not only NOT good enough, it sends her into a bad attitude and causes her to stop trying hard in math. The same goes for anything she does.

The other day I caught myself over praising Tyler when he was showing me that he knew his letters. I stopped right away and simply told him "great job buddy." As soon as I walked away from his easel Paige swooped in and started praising him over and over again. It was so over the top that Tyler yelled at her to "move sister!".

It may seem silly to some people that too much praise can be detrimental. But I wonder, as she gets older, where will she turn to find that praise? If I can't help her to understand that she doesn't need constant praise in order to motivate herself to do something, how will she succeed in life?

Octuplets

2009-01-27T10:51:00.002-05:00

I am sure most of you have heard about the Octuplets that were recently born in California. If not, you can read about them here.

There are so many emotionally charged questions running through my mind.

Is the human body really supposed to carry 8 babies?

Is this responsible?

Is this fair to the babies?

What about the cost to society?

To be honest, I have not heard if this was a result of artificial reproductive technology. Is it even possible for a pregnancy resulting in this many babies to have happened naturally?

CAM Series

2009-01-18T10:09:00.004-05:00

In the past month I have received 3 emails asking me about the CAM (complimentary and alternative medicine) series I had talked about doing way back in 2007. You can find my original post here.

First let me apologize for not answering your emails. Honestly I have been trying to figure out how I want to handle it.

As I mentioned in my original post, I wanted to start the series so parents can hear what has worked or not worked for others. But, what I did not want to happen was to give the impression that I personally approve of any type CAM. Since I never could figure out how to make sure of this, I have decided to hold off on starting posting about it.

I am a skeptic, one of "those people" who need proof for everything. Solid proof. After Paige was born I choose to stuff a sock in the skeptic side of my thought process and followed with my heart instead of my brain. It's easy to do when you have a child who needs help yet no one has the answers. But, after awhile I was no longer able to quiet the skeptic and she now rules my head again.

Do I believe that all CAM is fake? Absolutely not. I think that some forms of CAM are now widely accepted as part of regular medical care. But, I don't want to use this blog to mislead anyone into thinking that some forms of CAM are worth shelling out tons of cash, simply because it has appears to have worked for a few.

What also makes this topic very hard for me is that some of the people in my life, that I admire and love deeply, are very much in favor of CAM. I cannot find a way to discuss it without feeling as if I am dismissing their experiences.

On a side note... My blog anniversary (it's been 2 years since the first post.) has come and gone and I never realized it (I blame it on my addiction to facebook-hehe). I want to thank all who have been a part of our discussions. Talking openly and honestly is not always easy to do, so please know that I am forever grateful for those who share their stories and thoughts here.

The Importance of Statistics

2009-01-11T09:45:00.003-05:00

We've discussed statistics and research on this blog in the past. (If I was better at labeling my posts you'd be able to quickly access said discussions. :) I'll fix that soon.)

When we've had these discussions we end up talking about how the statistics are needed in order to discuss NICU care and decisions. Today I want to talk about how parents, who are raising preemies, need the research and statistics.

In the past I've talked about having a name for all of the conditions that seem to be common in children born premature. Recently Liz tackled this topic on her blog. As you can see from the beginning comments, people cannot handle when a preemie parent is honest about their feelings and struggles.

Statistics are not only important when talking about NICU decisions and care but they are also needed post NICU.

The reality is that there are preemie parents out there who have had their children removed (or threatened to be) due to failure to thrive. To the opposite, other parents have gotten great care from doctors who explain to them that the failure to thrive label is not their fault and occurs in some preemies.

Parents who bring their preemies to many doctors, begging for help for all of the issues that are not explained to the them in the NICU or by their pediatrician, run the risk of looking like a Munchhausen's case. Yes, it happens. To the opposite, there are the doctors who have read the research and statistics and know that there are many issues that preemie face and realize that it is not uncommon to have multiple specialists involved in caring for a preemie.

What about family/friends/neighbors who think you are simply not raising your child the right way and that is why he/she acts so different than peers?

In the January 1st edition of the Journal of the American Academy of Pediatrics an article was posted... Psychiatric Morbidity in Adolescents and Young Adults Born Preterm.

I was immediately saddened yet happy at the same time. Saddened that our kiddos deal with so much yet happy that other parents may not have to go through the disbelief on the part of the medical system, as we did. Paige is not the only preemie who has dealt with mental health issues. We have a good team in place now. They don't judge us, as parents, or say that we simply weren't raising her correctly. They know that prematurity can play a role in the mental health of a child.

Now, I am not saying that prematurity can be blamed for every ailment/condition that a former preemie may acquire. But, when you have a group of conditions that *seem* (that one is for you Clay) to be common, it needs to be looked into. So, to those who are compiling the statistics and writing the research... please keep it coming!

I want to add one more personal comment... I am not, by any means, saying that prematurity needs to define you into your adulthood. It was brought to my attention that some adult preemies who have escaped some of the long term issues feel uneasy about how they are doing. I have never heard this personally. To the opposite, I have gotten emails from adult preemies who have thanked me, and the others on the blog, for discussing the issues. It allowed them to no longer question what was going on in their bodies and minds.

I can assure you, Paige's prematurity does not define her. She does not walk up to strangers and introduce herself as a former preemie. But, the long term issues that her body endures, secondary to prematurity, does dictate how she feels every day.

Returning To Work After Having a Preemie

2009-01-04T08:35:00.002-05:00

Back in mid November Stephanie (23wktwinsmommy) wrote to me with a possible topic for the blog. The topic is one that many parents of preemies can relate to in their own lives. My comments will be at the conclusion.

Stephanie (23wktwinsmommy) writes:

"Edwin and Serena received home care nursing in our home because they needed oxygen....24/7 at first, and gradually have managed sleeping without it two years later. Nursing allowed me to work, which is how we have health insurance and money to pay our bills.

But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.

1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need prednisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to over stuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?

I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.

We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.

So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.

What are these parents suppose to do?

As for me...it makes sense to not get married, quit my job, get free health care and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)"

At the beginning of December Serena was hospitalized for an upper respiratory infection (Stephanie, please correct me if I am wrong). After she was released Stephanie sent me the following update.

"The only *good* thing that came with Serena's illness and hospitalization is it fell in the same month we are getting reviewed by the case manager regarding our nursing hours. We went from having her only on a multi vitamin and off O2 completely, to being in the PICU for a week, on neb treatments every 4 hours, to 2 puffs BID of Flovent, to an oral steroid for the next 2 weeks.

This will certainly allow us to keep nursing, but at what cost?

It goes to show that my kids, and many other extremely premature TODDLERS are not equipped to go to daycare, and around other sick kids. A runny nose for a healthy kid is respiratory distress for ours.

People talk about hiring a nanny. This may be an option for some, but the idea of paying a lot for a nanny so I can work 30 hours a week, doesn't make much sense. I think I'd rather stay home and collect SSI.

I hope half day special ed preschool goes ok in September! Maybe their lungs will be healthier by then!"

I was working full time when I became pregnant with Paige in a career that required school and licensing. When my water broke (at 23.0) weeks I still thought that I would be returning to work. Paige was born at 25.5 weeks and during the time she was in the NICU hubby and I started wondering how it was going to be possible to return to work.

After she came home (we did not have nursing care) it was clear that I was going to be a stay at home mom, indefinitely. Early intervention was in our home 4 days a week. For the first 2 years of her life we never went more than a week (give or take a few days) without a doctors appointment. We knew that daycare was out of the question because of her fragile health.

Financially we drowned. The NICU bills, doc bills (copays and meds that weren't covered) and our private insurance (over $1,000 per month) cost more than hubby made. We now had only one car (I had a company car that I had to give up since I was not returning to work) and relied on family members to take us to doc visits. We did not qualify for SSI any longer either. We ended up filing bancruptcy.

I think that the issues that Stephanie raises are not uncommon to preemie parents. I am interested in hearing what others have done.

If you have been successful in returning to work, what type of child care do you use?

If you haven't been able to return to work, how do you make ends meet?

Long Over Due Update

2008-12-30T12:44:00.004-05:00

To bring everyone up to date...

For quite a while now Paige has been having questionable episodes that left us wondering if her seizures were back.

She was first diagnosed with epilepsy 2 weeks before her 4th birthday, following a seizure on a swing at the playground. An EEG showed continuous spikes and she was put on medicine. Her meds were changed a few times and she ended up on Depakote by age 4 1/2. Each subsequent EEG showed continuous spikes and her meds were adjusted. By the time she was 5 1/2 she was on a toxic dose, which was evident by her blood test results. We had changed neuro's a few times and finally ended up with one who explained that due to her prematurity, her EEG's may always be abnormal. The new neuro weened her from her meds since we weren't seeing any seizures.

Right after she turned 6 we moved to a new state. Her new neuro completely agreed with her previous one and Paige remained med free, despite each and every EEG being abnormal (continous spikes).

Due to the recent questionable episodes we headed back for an EEG 2 weeks ago. Last night I received a message from her neuro that her EEG was normal.

Was I jumping for joy? Nope. An EEG is a snapshot in time. A clean EEG does not mean that she is seizure free. What was also bothering me was that I was present for the EEG and witnessed the spikes myself. I also wondered how we could go from having abnormal results on EVERY EEG to all of a sudden having a clean one.

Today we met with the PA at the neuro's office. She also shared my reservation about the clean EEG. She did say that some kids "grow out" of their brain abnormalities around Pagie's age but was quick to say that she is also concerned with the recent episodes. She ordered a 24 hour video EEG, which Paige will have (in hospital) some time at the end of January.

I want to thank everyone for their well wishes, both in the comments and by personal email. The kind words mean so much to us.

As for the other reason why I haven't been posting to my blog as often... A few months ago I started feeling sick. Recognizing that I had gestational diabetes with my 2nd pregnancy, I pulled out my meter and started checking my blood sugar levels. It became pretty clear why I was feeling ill. Most all of my 2 hour blood sugars were over 250 (with a few at 300)! (should be below 120).

I headed off to our GP who was not worried at all. My A1c levels were somewhat within normal range which left him thinking that I may simply have an infection somewhere. After having an allergic reaction to the first antibiotic (sulfur drug) I completed a course with a new one. My blood sugar levels were still high, despite me changing my diet to include ONLY salad and croutons (no dressing) for all 3 meals a day. I had lost 5 pounds in only 2 weeks. The doctor was still not worried and sent me on my way.

Over the next few weeks I did nothing but sleep and eat salad, now without croutons. I could not introduce any carbs whatsoever. I was able to get my blood sugar levels close to normal but my morning sugar levels were never below 180. I had been feeling so sick for so long and now I was only eating salad and my weight was dropping. Granted, I needed to loose weight but it was coming off too fast. I decided to go to an endocrinologist. As he scrolled through my meter he became equally as concerned as I had been and prescribed medicine.

I'm finally starting to feel better but I still can't have many carbs without my sugar levels flying over 200. Due to the extreme fatigue, blogging became the one thing I had to let go for awhile.

I'm back now and have lots to say. Thanks for sticking around and I hope you all come back for the upcoming topics.

Have a safe New Year's Eve everyone!

I'll be back soon

2008-12-21T09:40:00.003-05:00

Yes, I'm still here.

I'll be back soon with a new post and an update. Thanks to all who have emailed me with words of encouragement about the possible return of Paige's seizures.

U.S. Gets Low Marks For Rise In Premature Birth Rate

2008-12-09T10:33:00.002-05:00

Recently an article appeared in the LA Times titled "U.S. Gets Low Marks For Rise in Premature Birth Rate".

One aspect I found interesting was that the blame game has shifted a bit. The March of Dimes is notorious for ads depicting the cause of prematurity to be maternal smoking, drugs and lack of prenatal care. In this article, however, the finger is being pointed in other directions. Maternal age, rise in c-sections, in vitro, A.R.T (assisted reproductive technology) are all mentioned.

Dr. Alan Fleischman, medical director for the March of Dimes, comments,

"There's been a change in the way we practice obstetrics," Fleischman says.

That change, ironically, is partly due to lifesaving technologies developed to save preterm infants, Fleischman says. These have made many obstetricians feel that they've succeeded if a woman doesn't deliver before 34 weeks and that babies are more or less out of the woods by that point in the pregnancy.

This belief has lowered doctors' trigger points for performing an elective induction and cesarean delivery before a fetus has reached full term. If a pregnant woman is experiencing minor difficulties (or sometimes if she is simply feeling uncomfortable), some doctors will deliver the baby prematurely thinking that it is better for the baby to be in the neonatal intensive care unit than the womb.

"The problem is, they haven't taken into account that even late-preterm infants often have bad outcomes," Fleischman says. These babies suffer some of the same immediate problems that more premature infants experience, and often struggle with subtle developmental problems later.

"Getting to term should be the goal," he adds. "We don't want to stop one medically needed early delivery. But many elective inductions and cesarean sections would benefit from more careful consideration."

Engage With Grace

2008-11-26T08:12:00.002-05:00

This past week I was contacted by Paul Levy (who blogs at Running A Hospital) asking if I would participate in a project called "Engage With Grace". I gladly accepted. I've had personal experience with watching a loved one die the way they chose and unfortunately I've also had experience watching a loved one die without their wishes being heard. "Engage With Grace" will help facilitate an important discussion that everyone should have with their loved ones. If anyone would like to add this post to their blog (should be left up starting today and ending Monday) please email me and I will send you the code.

Stacy

******

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

10 Years Old!

2008-11-16T10:09:00.008-05:00

I had been working on a blog post for over a month now, spending most of my writing time staring at the screen and crying then deleting anything that I was actually able to type.

I still can't figure out why this birthday is hitting me so hard. It has taken me by surprise.

On Paige's first birthday I was an emotional wreck. I was fine through all of the planning. I was fine that morning while I was setting up the large room we had rented that would be holding the 56 attending guests. I was fine during the time we greeted each and every person who came to celebrate Paige's first year of life. Then, stupidly, I decided to give a speech. (people who know me well can attest to the fact that public speaking is not difficult for me). Even as I write this today, I begin to cry when I think back to that day. I opened my mouth, prepared to thank everyone for their emotional support, when out of my mouth came this squeaky voice. Then the tears started. Really started. It wasn't a pretty cry. It really wasn't a pretty cry. All of the hell we had been through was hitting me. It picked that time to attack me and I couldn't function. I turned to my husband (anyone who knows him very well can attest to the fact that he HATES public speaking) for help. He stared back at me with this look of "what the heck happened to my wife?" and did not say a word. Looking at him made me cry harder. We had been through so much in one year and here we were, still together, holding our beautiful child. I managed to squeak out some lame, very short, speech and then ducked out of the room to cry. It was an ugly cry. Primal tears. Anger. Fear. Joy. It was all there. It was painful. Still is. I had never allowed myself to cry much before that moment. There I was, outside of a room filled with 56 people, in the midst of an ugly cry that I couldn't stop.

Each year Paige's birthdays were emotionally easier for all of us. Each year the NICU experience consumed less of my thoughts on her special day and ended up as only a late night mini conversation with hubby. I am so thankful that the NICU memories can take a backseat now.

Back on that day of her first birthday, I never could have imagined a birthday without the main focus being the pain of the NICU time.

As Paige's birthday approached this year I was taken aback by the flood of emotions. It had been easier each year. Why was I going backwards now? I am still not sure why but it has upset me because I couldn't even get a blog post written. Geesh! I'm never at a loss for words. lol

Then along came an email from Chris. Oh Chris, you have no idea how much your words helped me (thank you! thank you! thank you!). You are right, "we have come a loooooooooong way baby!"

Paige is doing wonderful. Homeschooling was the right choice. She has gained about 6 pounds and looks healthy. Her meds are working and her skin is healing. She is an avid store rock wall climber and would do it every day if she could. She is surrounded by family (who moved here to be near her) who loves her very much. She has a strong spirit-one that drives her to many new areas. She is in tune to her surroundings and the people she encounters. She feels strongly about many issues that, once given the opportunity, will talk your ear off about. She is a beautiful person. We are all so lucky to have her in our life.

Double didgits! 10 years old!! Woo Hoo!!

We decided to take a family birthday vacation to a large indoor waterpark. We all had lots of fun. On her birthday we had a party with her local grandparents. I caught myself staring at her, in awe of her. She really has come a long way. I know the future does not guarantee that her path will always be this good. But, for now, we are enjoying these good days.

My dearest Paige... Happy Birthday!!!

(Correction... Hubby just read my blog post and has a bit of a different memory from Paige's 1st birthday. First he wasn't happy that I said that he hates public speaking. Correction... he only is comfortable speaking in public if he has written the speech ahead of time. 2nd correction... Hubby is sure he did say something when I was at a loss for words. Jokingly he told me that he said something about the blubbering person next to him but all joking aside, he is sure he said something. lol Gotta love hubby's memory!)

Please Help Ashton - Video is at the conclusion of the post

2008-10-30T13:34:00.005-05:00

Ashton is a 3 year old former 24 week preemie who is having episodes like the one captured in the video. Shannon (mom) has asked if I could post the video in hopes that someone may have an idea as to what these episodes could be.

I know some of you have seen this video when I sent it out last year, asking for your help. Unfortunately he is still having the spells, despite a lengthy stay in the hospital to get to the bottom of them.

Here is info about Ashton from December of 2007...

MRI in May 2007 that shows mild PVL.
Ph probe yesterday....not sure what yet. Had one about 9months ago
that showed reflux. duh
EEG (2 times) - they were abnormal but no seizure activity
*they are saying seizures (some of them) from me describing the
spells. However all docs that have seen Ashton have a spell have said
no it isn't a seizure. (he did them in ICU in Feb06)
Echo 8 weeks ago was fine. They discharged him. I have however heard
that echos do not show every heart problem there could be.
Last lung xray showed thickening of bronchial walls.

Born june 10-05 at 24 weeks 1.9lbs.
G tube placed Oct05
Spells started Nov05
Dec05 discontinued domperidone due to severe EP effects.
Jan06 home from NICU
4 days later back in b/c had 7 spells at home
Ended up in ICU on vent. Spells continued on vent.
Sats go to 20s, 30s and heart rate drops.
GJ tube placed and spells went away until he had two in July06(same
day), April07, June07 and then Nov07

Here is the most recent info provided by Shannon (sent to me on Oct. 20, 2008):

Okay long story short, we know that they are not seizures. He has had four eegs all with no seizure activity. He has had full cardiac workups showing nothing there at all either. I do have to say though that I have had two surgeons that have worked on him come out and say that he is shunting. No holes are seen/found.

If on a monitor while this is happening his oxygen sats will read anywhere from 20-40. His heart rate does not change MOST times.

His recent stay in ICU on a vent he had 11 of these episodes while sedated. When they try to bag him they either can't or it is VERY hard to. The doctor at this stay automatically thought of pulmonary hypertension. Echo was fine.

He has had a CT of his lungs that show not much more than BPD and blocked areas most likely from micro aspirations.

We thought they may be related to reflux however the ph probe and oxygen study showed no correlation between reflux and desats.

He frequently as well as desats to 60s, 70s and 80s. Not nearly as scary as the one shown.

This spell on video, just before it he was about to take a poop. Which made me think cardiac as well. However I have seen these spells happen out of nowhere with no warning.

Sleep study showed sleep apnea. Obstrutive, hypopneas and central. CO2 levels are higher than normal (about 70). The doctors told me that oxygen is basically toxic to him.

Scope showed airway was fine. Adenoids and tonsils are fine.

Also, Ashton did have a fundo in Feb. 2008 and now has a g tube instead of a gj.

Thanks to everyone in advance. Anonymous posts are completely allowed, as I am sure those in the medical field do not want their names used since Ashton is not their patient and they do not have full access to records.

WARNING... THE VIDEO IS VERY EMOTIONALLY HARD TO WATCH.

Make video montages at www.OneTrueMedia.com

Peanut Allergy and Halloween

2008-10-26T09:48:00.003-05:00

Last year our son was diagnosed with a severe peanut allergy. (of course I blogged about it)

Although it was right before Halloween, he was only 1. He was more excited about walking around and knocking on people's doors. He didn't care about candy. Heck, he didn't even know what candy was at that age.

Well this year he is almost 2 1/2 and wants to do everything that his older sister is doing. He knows Halloween is coming. He loves his costume and already has the sound effects down pat. His sister can't wait to walk around with him.

Hubby and I? We both wish the holiday didn't exist. We know that this may be the year that he feels sad because he can't have the candy. I'm angry at the allergy and sad for our son.

We plan on letting him carry around his little pumpkin and go trick or treating. We are going to have little treats to put in the pumpkin when his sister gets her candy but I know we won't fool him. I'm all about honesty with our kids but he is too little to understand why he can't have the candy.

Anyone have any ideas? Does anyone have any "been there done that" advice??

On a separate note... please check back in a few days. I will be posting a video and a request for help from Shannon for her son Ashton.

Cerebral Hemodynamic Changes During Intensive Care of Preterm Infants

2008-10-19T08:29:00.002-05:00

Interesting article in the October 17th issue of Pediatrics.

http://pediatrics.aappublications.org/cgi/content/abstract/peds.2008-0768v1?papetoc

I only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...

OBJECTIVES. The objectives of this study were to examine thecirculatory changes experienced by the immature systemic andcerebral circulations during routine events in the criticalcare of preterm infants and to identify clinical factors thatare associated with greater hemodynamic-oxygenation changesduring these events.

CONCLUSIONS. Routine caregiving procedures in critically illpreterm infants are associated with major circulatory fluctuationsthat are clinically underappreciated and underdetected by currentbedside monitoring. Our data underscore the importance of continuouscerebral hemodynamic monitoring in critically ill preterm infants.

Eye Doc Update

2008-10-14T20:44:00.004-05:00

Paige had stage 2+ ROP which was diagnosed while she was still in the NICU. She was tested frequently and it never progressed to stage 3 and she never needed surgery. Upon discharge she was tested again, which showed she was still stage 2+.

A few weeks after discharge she was tested again and it was gone. Completely resolved.

Jump ahead to age 6. We moved to a state that requires all children to have a current eye exam before starting kindy. We saw an optometrist who was freaked out by what she saw. She scared the heck out of us, gave Paige glasses, and sent us on our way.

We ended up seeing an ophthalmologist who specialized in children with ROP. He said that she had scar tissue from her ROP, which may be what scared the optometrist. He felt that there was no reason she needed to wear the glasses at such a young age because her eyes were not that bad.

The following year (age 7) he saw a change in her vision but still felt that she did not need glasses. Paige wasn't happy about that because she could not see distance. She started wearing her old glasses (from the optometrist) on and off.

Age 8... she was determined to get glasses. And she did. The opthamologist felt that the change in her vision was a bit concerning but was confident that it was not due to her ROP. He felt that it was genetic. (only my MIL had glasses at a young age)

Today was her annual check up. Her vision changed once again. (we knew this because Paige has been saying, for months, that her vision has changed) I talked to the doc in detail and asked a bunch of questions (thank you Sarah). He agreed that her vision change is more than usual but still felt that it was due to genetics and not her prematurity. I no longer agree. I asked him about her scar tissue. He agreed that she had scar tissue due to the ROP and that it would prevent her from ever seeing 20/20. But he felt that her scar tissue has nothing to do with her nearsightedness. He said that ROP damage usually only affects close vision. That is absolutely false.

He gave me that smile. Something that I cannot stand. If the smile could talk it would say something like, "oh, you shouldn't worry your self with all of these big medical terms. just trust me". I hate the smile!! He then turned and said something like, "She was such a wee baby and her eyes look great for being such a wee baby. Someone upstairs was looking out for her." Ok, those of you who know me and have been paying attention on this blog know that I also hate that statement!!

I asked him about her risk for retinal detachment to which he replied, "Well, there is a pretty good risk there based on her ROP and her vision change. She should never play any contact sports. Soccer, basketball, baseball, softball, volleyball... all out of the question for her."

Ummm, when were you planning on telling me this? If I hadn't asked, you wouldn't have told me this! You were half out of the office when I stalled you with my questions!! ARGH!!

I obviously didn't say that to him but I sure did flash him my *smile*. I don't think I have to tell you all what my smile would have said if it could talk.

Paige was not happy about getting her eyes dilated but she is happy that she'll be able to see better again.

When we left the office she chuckled about the docs' statement and said something like, "I thought he meant that someone on the floor above his office was looking out for me."

I love her attitude. I love her spirit!

"How Come...?"

2008-10-08T06:23:00.004-05:00

When Paige starts a sentence with those 2 words I never know what's going to follow. I do know, however, that it will be something this is hurting her deeply.

"How come my legs work differently than other kids?"
"How come I have pain and the doctor didn't believe me?"
"How come I have OCD?"
"How come the kids don't want to be my friend?"
"How come I lived but other babies died?"

As soon as she started talking in full sentences, the "how come?" questions started. They are never simple ones either.

On Sunday, from the backseat, came another one, "How come I'm the kid who never gets invited to birthday parties?"

I tried to make her feel better, forgetting who I was dealing with in the backseat. "Oh honey, it is one of the drawbacks when you are homeschooled. You aren't around such a large group of kids like you are in public school."

It didn't work.

"But Mom, how come I wasn't invited to parties even when I was in public school?"

Without missing a beat hubby responded, "Ya know, as you get older the number of kids that get invited to parties gets smaller. When you are little the parties are big and the whole class gets invited. But when you are older you only invite a few of your best friends to your party."

"But how come I am NEVER invited?"

She then got sidetracked by her brother and the conversation was over.

For her.

Here we are, 3 days later and it's still eating me alive. She is right, she is never invited to parties.

This morning hubby and I were talking about it while he was getting dressed for work. When I asked, "How can I fix this?" he turned around and gave me "the look". No words needed.

Preemie After Preemie

2008-09-30T14:00:00.002-05:00

During a recent discussion an anonymous person wrote:

"I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?"

I replied:

"You may be shocked by what I'm about to say but... you are right.

Hubby and I did not plan on having more kids. Not only were we afraid that we would have another preemie (since we didn't know why my water broke with Paige), we also knew that we couldn't afford to have another child with disabilities. Also, every time we had talked about trying again (a few years after Paige was born), we both knew that we would not be able to live with the guilt if the 2nd child ended up with long term issues secondary to prematurity, just because we wanted more children."

I didn't realize that I'd be opening a can of worms when I posted my reply. But, since it's open already (which is evident by the emails I received), let's discuss.

Should people have more children if they don't know why their previous pregnancy ended early and thus cannot be sure their next child will not be born early?

Before you say that it is a personal decision, think about how it could affect others. Government assistance, health care costs, additional resources needed in school, etc... all ways that ones decision affects others.

The topic of over population (not relating to prematurity) is a hot topic. I found it quite interesting while reading a recent issue of my VegNews Magazine that people are choosing to not have children to control the population. Salon also took a comprehensive look at the issues in their article "Do We Need Population Control?".

I am not trying to start a war here but I do feel that the topic is worthy of discussion. Count to 10 (or higher) before leaving a comment please. And, once again, please leave your deity at the door.

End of Summer Update

2008-09-21T12:41:00.003-05:00

I've been absent lately and while I would like nothing more than to say that I am back on track and ready to blog regularly, that would be stretching the truth.

We traveled a lot this summer, really exotic locations. I started a few good books that I've been engrossed in and could not put down. Then we decided to finally finish the bedroom in our basement and worked really hard on cleaning out the storage room so it wouldn't be a fire hazard. Finally, I decided to put myself before the kids and concentrate on my own health.

Then I woke up. It was a nice dream while it lasted. lol

Life is rough at times. Life is good at times. The past few months have been filled with both scenarios.

During the summer we took Paige off of one of her mental health meds for her OCD. The doctor felt that the cognitive behavior therapy was working since she had almost completely stopped her skin picking. And, honestly, I wanted to believe it too. Why wouldn't I want that for my child? To be free of one med and free of oozing scabs all over her body was something we never thought possible. She worked so hard to stop the picking. When we made the decision to homeschool it seemed to lift so much of her anxiety. We are so proud of her.

We knew that there was a chance that her mood would suffer for a few weeks until her body got used to the med being gone. And, suffer it did. But, she still managed to audition for a play, get a role and attend every single practice-all without much anxiety.

When she would get crabby or appear to not be listening to her father and I, we attributed it to everyday stress. When she would explode and have major meltdowns, we guessed that it was the play or even simply typical behavior for a 9 year old. Yes, she wasn't herself but we were blind. Ok, now I'm not sure if we were blind or it was a case of ignoring what was in front of us because we wanted her to be ok.

When she started complaining that she wasn't feeling good at night, for a few nights in a row, we recognized what was happening. The OCD was controlling her again. We had forgotten all about these nightly battles. In the past she would demand that we take her temperature at bedtime because she was convinced that she was sick. When we would refuse to even feel her forehead she would start to meltdown, screaming hysterically. Every night. We all suffered for more than a year until she had started the medicine. Her doc told us that it was the OCD. He was right. On the med, bedtime was wonderful (as long as she has her melatonin).

After she had been off the medicine for about a month she started picking her skin again. She begged me to call the doctor so she could go back on the medicine. I didn't want to give in so quickly. I was still holding onto that hope. It was all about me and I recognize it. We put a rubber band back on her wrist and reminded her to snap it when she felt the urge to pick.

One more week passed by. The rubber band trick was not working. She was miserable. The OCD monster had her in its grip again. It has us all in its grip. The entire house was operating around it. The "thoughts" were back. THE "thoughts". The ones that used to cause us to lock our bedroom door at night.

One morning Paige came running into the living room screaming, "Please call the doctor. I can't take it anymore." The tone and pitch of her voice was something you would expect to hear from someone on fire.

I called the doc, fully expecting to have to fight for her. He didn't want her on the medicine long term and he made that quite clear during every appointment. I sure was shocked when he agreed, without any hesitation, that she needed to be back on it.

It's been a few weeks now and she is doing MUCH better. Gone are the nightly battles. Gone is the counting. Gone are THE "thoughts". She gave in and picked a few mosquito bites but we feel that falls under the realm of normal.

Paige finished her play. 6 performances! Yes, I cried like crazy watching her up there on stage. A real stage!

Homeschooling is going good. I still feel it is the best thing we have ever done for her. Some days are hard but it's getting much easier now that she is back on her meds. I asked her if she missed anything about going to school. Her answer... "I miss getting a new back pack every year." lol

Hubby went away for a week on a business trip. It was only the 2nd time we have ever been apart in the 17 years that we've been together (the first time was 17 years ago). To all of you single parents, I am in awe of you!

So, I'm still here in the blogworld, just have been a bit preoccupied with life. I have been reading everyones comments and feel incredibly proud to be surrounded by so many intelligent, passionate individuals. There was one comment left under the last topic that I will be addressing in my next post. I'm sure it will cause a ripple but I feel it needs to be said. Hopefully I'll be able to post soon, as long as life cooperates.

Thanks everyone!

The Cost of Ongoing Medical Care-Who Pays?

2008-09-04T21:40:00.002-05:00

Recently I found a new blog and spent some time reading the back posts. When I came across this post, over at White Coat Rants I felt the need to comment. Specifically it was the following statement made by the blog author that caused me to pause...

"Hospitals seem more and more willing to sue for medical debts. Should hospitals be able to force people into bankruptcy for the medical services that they provide?
A hospital is a business. Without money, the business goes bankrupt.
If you walk into a lawyer’s office, many times you’ll need a retainer or the lawyer won’t take your case. If the retainer runs out and you don’t pay, then the lawyer stops providing services.
If you walk into a supermarket, fill up your basket, and leave without paying, you’ll be arrested for theft.
Stop paying the guy to cut your lawn and you’ll have to do it yourself.
Why do people expect that medical care should be free if they don’t have any money?"

After reading all of the comments, I left one of my own.

"The comments are great and allow everyone to look at the situation from many angles.

I have another one though..

What about the parents of a child born extremely premature? Not only will you have the hospital bill but you may also have on-going medical care for the rest of their lives? What if both parents can’t work because there is no one to take care of the special needs child? Can one person really work enough hours to cover all of the bills?

What if said bills are higher than they would be if they were billed from another department? For example… nursing care is billed at a lower rate in the ICU than it is in the NICU? Is that fair? Should one department be allowed to charge higher even though the same skilled staff is used? Should one department be able to charge higher rates so the revenue will cover less lucrative departments?

What is a person to do? Deny care to their child? Let their child suffer?
Choose not to resuscitate because the parents will not be able to afford the care?"

To which the blog author wrote:

"States have SCHIP programs to help pay for care of children with costly medical problems."

That's when it hit me. People actually believe that the above mentioned program is the answer. Please don't head over to White Coat Rants in anger. The blog author seems to honestly feel that the program is working and helping people.

I, on the other hand, know differently. The program varies by state so my experience may not be the same as others have had. But, that system is broken and does not help all who need it. And, this blog author is not alone in their thinking. I can't even begin to count how many times people have assumed that we had Medicaid because of Paige's ongoing care.

When Paige was diagnosed with Epilepsy (4 years old) we were shocked to find out that our health insurance (which we paid for ourselves at over $1,000 per month) had an annual cap of $500 for prescriptions. Between her new meds and the rescue meds we had to have on hand, we blew through our allotted $500 in under 2 months. I had heard of the Katie Beckett waiver so I did some digging. I called our Medicaid office (in our previous state-Illinois) and was told that Illinois did not participate in that program. We were told that there was a similar program but we didn't qualify because my husband made too much money. But, they refused to take into account the ongoing medical bills that we were paying out, or the fact that we were paying for our own health insurance, which left us without enough money to eat at times. (Many of you have already heard me talk about how we lived on Spaghettios during that time)

When I asked (begged actually) the woman to help us she told us to get a divorse and have hubby say that he lives out of our house. This way his salary would not hinder us from getting help. When I told her that I didn't consider that to be a viable option she told me that many people do it. Her second suggestion was to have hubby quit his job and work at Walmart so we would qualify.

Again, I realize that all states are different. But at that time (almost 6 years ago) the total household income dictated whether or not you could qualify for help.

Hubby ended up leaving his job and taking one with a company that offered health insurance. But, that only solved our perscription problem. We still had the cost of the copays for each doc. At the time she had 9 of them! Add that to the cost of our portion of the ongoing tests and we are right back where we started.

When we moved to our current state of residence, I tried to get help again. Same problem... hubby makes too much money and the state refuses to look at how much you are paying out in continuing care.

And now we live in one of those states that adds interest to outstanding medical bills and sues if you don't pay.

Do I feel that I am entitled to medical care for my child without having to pay for said services? Of course not! It's a horrible feeling to know that you can't afford your child's medical bills.

But, where is the solution?

Again, I want to stress that I don't feel that the blog author deserves all of us running over there and leaving comments that are not helpful.

I would love to hear from everyone here.

Are you happy with the help you receive from state programs? (I have heard that PA is a good state to live in)

Do you have any suggestions for programs that you were able to qualify for and have been helpful?

How do you pay for the ongoing medical bills??

How about your NICU bill? Did insurance cover it for you? (Ours did not cover any meds used off label, which left us with a $75,000 pharmacy bill)

Full Potential

2008-08-25T20:18:00.003-05:00

A few months back Chris (Chris and Vic) brought up the topic of "living up to ones full potential". I instantly thought that it would make a great, thought provoking, post. I settled in with my laptop, fully expecting to bang out the words with ease.

"Let them be who they are and find their way. They'll decide what their own full potential is and follow the path." It sounded so simple as I was writing it. Then I stopped to think about what I was saying. Could I really just let Paige follow her own path? Is that what a parent should do?

Does everyone have the ability to realize their own full potential, without direction?

I saved the post and decided to pick it back up again a few weeks later. I stared at the screen in hopes of continuing the post I had started. But, my feelings on the topic had changed. When Paige came home from the NICU I used to say, "I don't care if she shovels sh*t for a living, as long as she is happy." Did I think, back then, that shoveling manure was in her future? Would that be all she would be capable of doing?

So, does ones abilities dictate their full potential?

Life took over and I never finished the post. It wasn't until I received an email, from someone that I met a year ago in the blogworld, that opened my eyes to my part on the path to Paige's full potential. This person is an accomplished specialist and a former preemie. His long term issues are not visible in daily life, for the most part. But, he was embarking on a personal goal in a sport that is rough and he was concerned about his ability in one area, due to one lingering preemie issue. I was so proud of him for trying something so difficult. He never gave up and his perseverance paid off.

In the comments section of a recent post I mentioned that I recently made a pretty big parenting mistake. Paige asked if she could take ballet again. She was in it for a few years when she was 4-5 years old. It was fun watching her dance around and quite the tear jerker for hubby and I during her recital. The year after we moved we enrolled her in a ballet/tap group. She was older now and her limits were quite apparent. She could not properly stretch, nor could dance without pain. She asked to stop and we had no problems agreeing.

Well, jump ahead to the end of last month. Paige asked if she could take ballet again. While she was asking me she was dancing around looking so sweet. But, her limits are really apparent now. She cannot stretch her legs and the tightness in her muscles causes her pain, even when she is not doing anything strenuous like ballet. The kids she would be in class with would be much further along than her. She started begging to take ballet.

(here comes the huge parenting mistake) I told her no. *I* knew that it would cause her pain, both physically and mentally. *I* knew that she wouldn't be able to keep up. *I* knew that she would have to drop out of the class.

But, it wasn't until I received the above mentioned email that I realized my mistake. Who was I to dictate what Paige was capable of doing? Even though I was trying to protect her, was that the best possible way of handling it? I no longer think so.

I learned a lesson, thanks to one special person sharing his concerns and then his triumphs. I still can't decide how I feel about Paige living up to her full potential. I still can't fathom what her full potential may be.

I do know this though... I need to make sure I am not the one who limits the possibilities of what her full potential may be.

Thanks Chris for always making me think.

Thanks LS for sharing your news with me. There was a lesson for me to learn and you opened my eyes.

It's Worth Repeating

2008-08-17T20:45:00.002-05:00

I first published this post way back on Feb. 7, 2007. Due to a recent email I received, which I will not be sharing, I will be reposting this entry. I hope it will help the author of the email as well as others who are feeling that they are the cause of their child's issues. You are not alone. If you found your way here through a search, I hope you will also share your story so others will know they are not alone.

****
Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

More on Mental Health

2008-08-09T20:32:00.004-05:00

Some of you may have heard about/read a recent news story about Terri Stimmel, a woman convicted of killing her roommates cat.

You may read the story and be shocked by her actions.

I, on the other hand, read that story and was immediately saddened by the fact that she had not had proper mental health help. The story quotes her as saying that she had "uncontrollable impulses". Could it have been OCD? Another issue? Could it have been prevented by medicine and counceling? (Both of which she is currently receiving.)

Fortunately she is finally getting the help that she deserves.

Unfortunately animals died, the owner of the cat is suffering and Terri's life will never be the same. She is painted as a monster but no one is addressing the real issue...

Our health care system is failing our most vulnerable people... those with mental health issues.

There is one fact (among others) that was left out of all of the news stories about Terri.... she was born premature. Yep, yet another former preemie with mental health issues.

I have been very open on this blog about Paige's struggle with anxiety and OCD. She has hurt herself, hurt her brother and had thoughts of hurting her father and I. She makes innapropriate statements in front of others. She has thoughts that are too scary for me to mention here. All because of her OCD "thoughts". There are times when I want to crawl in a hole, bury my head in the sand, deep below reality and never talk about it again.

Then I get letters from other adult preemies who thank me for being honest. They need to know they are not alone. The letters from parents of kids, who are the same age as Paige, hit me hard too (although I wholeheartedly appreciate each and every one of them).

The kids are hurting. Families are hurting.

Who will take care of our kids when they are adults and out on their own? When we die? What happens if they can't afford mental health care? What happens when they can't work because of mental health issues?

Our kids WILL grow up. There is an entire group of kiddos who were saved at the edge of viability who are now having issues like Paige.

Will the system be there for them?

It sure isn't there now. It wasn't there for Terri.

"When is my next test Mom?"

2008-08-03T09:36:00.002-05:00

Below is a conversation between Paige and I while she was in the chair, at the dentist, waiting for the numbness to take effect, to get her tooth pulled.

Mom, when is my next test?

What test Paige? (thinking she was talking about homeschooling)

Any test.

(I paused to think) Hey, guess what? You don't have ANY tests scheduled. Wow, that must feel good.

But what about my EEG's?

You don't have one scheduled.

But I'm supposed to have one every year. The last one showed spikes.

Paige, they always show spikes. Remember the doctor said that they would always show spikes but that doesn't mean that you are having seizures. He said that we didn't need to come back unless we thought you were having seizures.

What about my blood tests Mom? Or my MRI's?

Nope. You don't need any.

But what about...

Honey, you really do not need any tests right now. You are doing great.

The dentist walks in. She tries to pull Paige's tooth but Paige ended up needing more novacaine (or whatever "caine" they use now). After 4 or 5 shots Paige is finally numb. The dentist struggles to get the tooth out (it was a back tooth that had such a bad infection that even a pulpectomy didn't work). Paige never struggles or cries even though the dentist really has to work the tooth to get it out. The dentist looks concerned but finally gets the tooth out. The dentist was visibly shaken. I wanted to cry. I have seen Paige endure a lot of medical procedures but this was harsh. Her little head was really being thrashed. Her small mouth was stretched so wide. It was horrific. But Paige remained calm.

The dentist leaves the room. Paige tries to sit up and her entire body starts to shake. Her eyes roll. This lasts for less than a minute. She whimpers, "mom, why am I shaking?". A few minutes later she sits up like nothing happened. The dentist came back in with Paige's tooth, all cleaned up. Paige spends a few minutes examining it with great excitement and then hops out of the chair and skips to the waiting room. While I'm making her next appointment (to get her spacer) she yells from the waiting room...

Mom, you forgot about my eye test. See, I knew I had a test coming.

When we got home she curled up on the couch for a short time but then decided to get up and play with her cousin. That was it. Through all of that trauma she only needed a few minutes to rest and she was fine. It was a huge tooth. But the trauma was all ours (mine and the dentist).

After we put the kids to bed I fell apart. Sobbing uncontrollably. Poor hubby didn't know what to do since I'm usually a rock when it comes to her medical procedures. I've had to be that way.

It was then that it hit me about my conversation with Paige. I was feeling so overwelmed after watching the procedure but also feeling overjoyed that we didn't have a test scheduled. This is the first time in 9 1/2 years that we don't have an upcoming test or procedure. The first time that I don't have to prepare myself to watch my baby be stuck with a needle or jammed with a tube.

So why was she troubled by the lack of medical intervention in her life? You would think she would be relieved. To be honest, she is never stressed when she has tests (barium enema excluded) but you would still think that her joy would match mine. Actually it should have been greater.

But, it's all she has known.

(For those who have known us for awhile and remember that the docs said she may very well have orthostatic intollerance... hmmm do we really need a tilt table test now? I think her reaction after being sat up in the chair says it all. Who needs an expensive test. lol)

Researchers Link Premature Birth To Emphysema

2008-07-29T12:55:00.003-05:00

While this study only included a very small sample (21), I feel it is worth mentioning.

http://www.reuters.com/article/latestCrisis/idUSL9310544

"A small study of 21 infants born up to four months prematurely in the 1980s and weighing as little as 0.6 kilograms showed that by the time they were young adults all had lung problems, including 84 percent who showed areas of emphysema."

"The young adults in the study were born between 1980 and 1987 and were dependent on supplementary oxygen for more than 28 days during their stay in the hospital."

Anonymous Asks....

2008-07-24T20:38:00.002-05:00

I received an email from a parent who is asking for guidance and information. This parent has asked to remain anonymous. I hope everyone will take a minute to read the post and see if they have any suggestions, as they have in the past. I have already sent a response to the parent, which you can read in the comments section.

******

I'd like to know if it's too early to make an independent decision to take my son to a neurologist. He is a 22 month old 27 week preemie who weighed 980 grams at birth. His apgars were 0 and 0 at all intervals - and the hospital spent 45 minutes resuscitating him. He is currently in the less than 3rd percentile for weight and refuses to take a sippy cup or eat decent quantities of solids. He seems to have some sensory issues, i.e. won't take our hand when walking, must get down on his knees to move from a 1" thick mat to the floor.

He was recently assessed by a developmental group and received the following scores:

Bayley Scales of Infant Dev II

MDI: 107

PDI: 73

Classification: Mental 18-19 months, Motor 16 months

Receptive Expressive Emergent Language Scale-3

Receptive Language: 12 months

Expressive Language: 15-17 months

Rossetti Infant Toddler Language Scale

Language Comprehension: 12 months

Language Expression: 17 months

No one has interpreted these results to us, though I have found some information on the Internet regarding the Bayley PDI score - with the mean score at 85 and mental retardation at <70.

Our speech therapist insists that he isn't anywhere close to mental retardation, but his score worries me. When I asked the gal doing the assessment if I should be concerned, she replied, "Nooooo. He's just going to be a 'different' kind of learner." I have NO idea what she meant by that!

Long story short, I'm wondering if it would be effective to move forward and see a neurologist who specializes in preemie development. Or, should I just wait until he gets older for a more valid assessment?

THANK YOU for all that you do with your blog, especially when you share your own personal stories. I cannot tell you how much you have helped us!

Dear Sarah,

2008-07-14T20:44:00.003-05:00

This post has taken me a few days to type. Honestly, my extreme emotions have taken me by surprise. As you well know, I am never at a loss for words. But, since we first hugged on Tuesday my head started to swirl.

It took me a few days but I have finally figured out why. Whenever I am face to face with people, I tend to be guarded because Paige speaks before she thinks. Imagine how stressed I should have been. Paige in a hotel filled with blind people. I was waiting for her to start asking everyone what medical condition caused their blindness. She has been known to walk up to complete strangers and start asking questions.

But, from the first moments of our time together I felt safe with you. I knew you would not judge us if Paige let her curiosity show. Safety. What an incredible gift you gave to me Sarah. What an incredible gift you gave to Paige. She asked questions, you answered. You never made her feel bad for wondering.

Within minutes we were all laughing. Paige was completely drawn to you and your incredible spirit. So were Jason and I. So were many others. Your helpful nature came shining through.

During the ride home Tuesday night, I was already looking forward to our Friday visit. Paige didn't stop talking about how much fun she had and how much she loved spending time with you. But, it was then that I realized how much this world needed to change. That's when my emotions got out of control, very quickly. Our trip to Target was a huge step into your reality. Before that day I never even thought twice about many of the restrictions that you face on a daily basis. You are so amazing. You make it all seem so easy.

Friday came and I was so excited to be spending the day with you and Kevin. With my crazy emotions in tow, Paige and I practically ran down the hotel hallway to your room. Before we even got there we could hear your laugh. Paige smiled really big.

She had a blast that day. From playing with Loretta, getting to go with you to try out the possible currency options, seeing how your computer works, listening to your music, and even being turned into a blind child. She loved it all.

She learned some pretty hard lessons that day too. Seeing the reactions on the faces of sighted people was very difficult for her. But, being that she was in the safe environment that you created, she was able to learn from what she saw.

Sarah, I am forever grateful for the time we spent together. You are an amazing woman. I know you won't agree with me when I say that you are one of the most courageous people that I know. You would tell me that you are merely doing what has to be done. But, there are plenty of people out there who would never venture into unknown territory like you have done. You are an inspiration to many.

I could not end my letter here. There are a few more people that I need to mention.

Michelle,

I really enjoyed getting to know you. You had no idea about this but you said something to me that brought tears to my eyes. The first day we met you said that you liked my blog because I "tell it like it is" and you were glad that I was out there talking about the issues. You have no idea how much that meant to me to receive such validation from a former preemie. I can't thank you enough.

I had so much fun spending time with you on Friday. All that laughing we did while walking the dogs was wonderful! You made us feel so welcome. I look forward to reading your journal and getting to know you better.

Kevin,

Oh where do I begin? You are one very special person. You are one of the most open minded people that I know. You treated me with respect after finding out (thanks to Paige's openness) that our religious beliefs are quite different. That's a rare quality nowadays. I really enjoyed our lunch chat! Oh, and your sense of direction... could I borrow it? If it wasn't for you, we would have gotten lost on our return trip from Target and our walk back after lunch. I sure will miss your sense of humor too!!

With much love to all of you,

Stacy

OCD and My Thin Skin

2008-07-06T21:37:00.002-05:00

First off, I am thankful to those of you who have stuck around. It has been a crazy time in our house. Between doc visits and out of town guests, we all haven't slowed down since school let out at the end of May. I am going to be around much more now that our chaotic life is calming down a bit.

Now on to my good news...

For those of who need to be brought up to speed: Our daughter has very severe OCD. Her compulsions have ranged anywhere from counting objects, harming her brother, breaking things, all the way up to harming herself. Her most recent battle has been skin picking, which has been going on for over a year. Her psychologist worked with her and finally suggested that we see a pyschiatrist for meds. It took quite some time to find the right mix. She ended up on Zoloft and Resperdal. Her psychiatrist only wanted her on the Resperdal for a short time but she has been on it for almost a year because the skin picking was out of control.

At the worst part of her ordeal she had over 100 open sores. We really thought that she would never be able to stop. Medicine wasn't helping, cognitive behavior therapy wasn't helping, rewards weren't helping... nothing. Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.

Well, her psychiatrist was now convinced that there had to be some sort of congitive behavior therapy that would work. He had us go back to her previous psychologist and ask her to work with Paige.

The psychologist gave Paige a rubber band to wear around her wrist and told her to snap it whenever she felt the urge to pick. I was very leary because Paige likes pain. I was worried that she would snap the rubber band excessively, causing welts. The psychologist said that it was ok if she caused pain. She said that Paige has to replace the pain felt during skin picking with another pain, in order to surpress the compulsion.

At the start of the program Paige had over 40 open sores (and over 100 scabs).

It's been about 3 months now and I am thrilled to report that she only has 4 scabs! They aren't any open sores!! Only 4 scabs!!! We are so proud of her. We are seeing her compulsions come out in other ways but they are not harmful and they are quite manageable for her. They best part is that she is proud of herself too. We are headed to the psychiatrist this week. He will be so proud of her too. The next step will be weaning her off the Resperdal. Please wish us luck! We've heard some horror stories about the weaning process.

Now on to my thin skin...

I have been jumping out of my skin with excitement over Paige's amazing accomplishment with her skin picking. Since I hadn't had a chance to post the good news on to my blog, I had quickly mentioned it on one of the on line groups I am on. I had planned on posting a quick update on my blog the next day but then I got suckerpunched. I received an email from someone telling me to read the post of a fellow blogger. A fellow preemie parent blogger no less. My jaw dropped when I read the post. This blogger was basically saying that OCD was the fault of the parent. I felt it was clearly directed toward me since it was me who was just talking about Paige's success.

My skin has thickened over the years. Between my strong feelings about comfort care and my lack of belief in a supernatural being, I have been called lots of names and been in the middle of a ton of controversy.

But, for some reason, hearing people say that Paige's OCD was my fault knocked me on my butt for a bit. I never saw it coming. I shouldn't have let it get to me, but it did. I remember walking away from the computer, head about to explode and there was Paige, right outside of my door crying. She was devastated because of the permanent scars her skin picking had left on her arms and legs. I was devasted too. Her skin used to be so beautiful, like a porcelin doll. Now her skin has hundreds of scars. As I hugged her on the floor I thought to myself, "how could someone be so hurtful and accuse me of being the cause of this?"

A few days went by and I was still devasted. A few more days... still upset about it. A week went by and I was still thinking about it. I was beginning to think that I would be stuck in that funk forever. In that dark time I received a few emails from people who saw what happened. I will be forever grateful for those people because it was their notes that pulled me out of the funk.

I always knew it wasn't my fault but it still hurt. Foolish me! I actually chose not to update my blog with the good news because it would look like I was retaliating against my fellow blogger. Boy was I being childish! Never again will someone rattle my cage that way again!

Pain Response in Preemies

2008-06-29T22:03:00.002-05:00

"Methods commonly used by doctors to assess pain in infants may be underestimating the amount of pain they feel, according to a study by UCL researchers."

http://www.ucl.ac.uk/news/news-articles/0806/08062402

Taking a Small Break

2008-06-10T08:30:00.002-05:00

I just said good bye to one set of relatives who were visiting from out of state (hadn't seen them in 24 years!) and now I'm getting ready for another set to roll in (who will be here for a week).

I'll be back in a few days with an OCD update and will answer emails and respond to comments then.

I hope every one is safe from all of the nasty weather that mother nature has thrown our way.

Calling All Vomit Experts

2008-05-26T21:28:00.002-05:00

I need everyone to head on over to Liz's blog and help her out. There is a video of her daughter vomiting during eating. The docs are out of ideas. I know it's a lot to ask, but if you have ideas and reach out to Liz, please also post it here. My site meter always has hits from people searching for help for their vomiting preemies.

http://lizmccarthy.blogspot.com/2008/05/please-help-solve-our-vomit-issues.html#links

(I think the link will take you to the bottom of the comments. Please scroll all the way up to read her post).

Here is some additional information, from Liz, about her daughter.

Hi Stacy,

Thank you for your reaching out, after yet another day of pghelmy vomit, I
am about ready to throw my hands up and give up (yeah right, how can I give
up).

To answer your questions and more too, (as others have asked me too via
comments on my blog): (I think I'm going to put this in my blog too)

-No nissen, we've refused. The GI has been ok with us not doing one, as K
has gained weight on her own little nice chart (albeit with a LOT of work on
our part making up for the vomit). I truly believe this will not help her.
I know with a Nissen she would continue to gag and get phlegm - it will just
stop the vomit from coming up, but isn't going to solve the problem of the
phlegm

-Her left vocal chord is paralyzed

-She has her tonsils and adenoids (never been looked at), as I hate having
her scoped as she is already so oral averse. Does not have ear tubes.

- had 2 ear infections this year and 2 last year, minor ones.

-she is a very good pooper, never been constipated, EVER.

-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs
straight at night without vomiting mostly.....she could only tolerate breast
milk, any formula and she vomited at night too (this was donated breast milk
so it wasn't "dairy free diet" breast milk. Because she never/rarely
vomited at night, I've always believed that she didn't have a milk issue.
It's when she's awake that causes more problems. As an infant she slept on
in include. NO longer, and was tube fed (BD) laying flat with no problem
whatsoever.

-We had tried all the hyper allergenic formulas at one time or another, and
no reduction in vomit.

-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2
weeks, with no difference in reduction of phlegm

-when was RAS allergy tested, no milk allergy shown

-never had any other signs of allergy (no blood in stool) no rashes (except
for some recent eczema on her feet and ankles)

-I just set an appointment to see an allergist (which is months away)

-it was when we switched to a BD (Blended diet) that her vomiting finally
got under control 2-3 times a day and we could much more rapidly give tube
feeds and we even were able to get rid of the night pump. We still gave her
last BD feed after she went asleep, but we finished by midnight, and she
never vomited. Her BD is milk/yogurt based, (again, remember at night we
could feed her BD asleep with no issues of vomiting and she was lying flat)

- Her vomits are now one of 3 types: - phlegm induced (she tries to clear
her throat and ends up emptying her stomach), gag induced (she's a horrible
chewer and often swallows food whole which results in a vomit) or
occasionally unannounced reflux type vomit (just comes all of a sudden, but
this is VERY rare).

-She's been on prevacid solutabs for almost her whole life (after zantac
didn't do anything, nor did prilosec), then again, we never saw any
difference with prevacid either (no reduction in vomit, I know, PPI don't
stop vomit, just reduce the acid)

-I took her off prevacid about 3 months ago, and felt strongly that her
phlegm seemed to decrease. I just started her back on it again, as I'm
afraid of the damage to her esophagus/teeth from the vomiting., but I happen
to strongly think that it's increased how much phlegm she is dealing with.

-we tried a few weeks on Periactin and went 3 days without vomit and hardly
any phlegm (first time EVER), then she got sick afterwards 3 times back to
back, so we haven't tried that again.

-she now eats 100% orally, only purees and doesn't "like" to eat, especially
when she has all that phlegm in her throat (for obvious reasons) Not a good
chewer, although she tries to chew meat, it takes forever, and for us to get
calories in we have blend her food

-her lungs are doing quite well all things considered, she doesn't have
asthma, has never had pneumonia since leaving the NICU (which typical
refluxers get a lot of pneumonia) (although has had some serious colds that
go into her lungs - one time bronchitis) and has had oral steroids a few
times.

-she never writhed/screamed with eating like you think of "typical"
refluxers, not signs of being uncomfortable except the refusal of eating.

-She was on reglan upon first coming home from NICU, no reduction in
vomiting, stopped years ago.

-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.

Here are my ideas:
- She needs something to stop the production of phlegm. I think I'm going
to take her off prevacid again and see if we get a reduction in phlegm like
I think I did last time) as a trial. I'll put her on zantac to reduce the
acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but
my thought on Dom is that it is supposed to speed up processing time of
food, don't know if she needs this but I've heard form quite a few other
moms that it was a miracle worker for their vomiters.

OK, I just posted all the above on my blog too!

Thank you my dear!

Liz

Those Years Are Gone

2008-05-22T19:39:00.003-05:00

Under my post "Guilt Revisited"

Future of Hope wrote:

"Anyways.... My guilt hits me full force whenever I look back at my son's early years. All of the time spent focused on this milestone or that, pushing and prodding for just "one more" skill, all the time spent running from PT to OT to SLP and back again. I would give literally anything to go back in time and get off of that merry-go-round. We lost so much. So much fun, so much "bonding", so much discovering and play. All in search of what was "supposed to be" instead of "what is". If he hadn't spent so much time pushed beyond his limits, would his social/emotional outlook be better? I missed so much that can't be gotten back - so many "firsts" that came so late that they brought with them more anxiety than joy. I was so wrong. I want my baby back. NOT my "preemie", not my "special needs child" but my BABY. the one that I had in my arms, and that I dreamed away."

Not one day has gone by since I first read her comment, that I haven't thought about the emotional impact of her words.

I have often thought back to the beginning years of Paige's life. We had various therapies 4 days a week, for her first 2 years. Physical therapy (twice a week), occupational therapy, speech therapy. 4 days a week of people coming out to our house to tell us all of the milestones she was not reaching and how to help her reach them. After 2 years, the time spent in therapy lessened to 3 days a week and we then saw the therapists at a pediatric therapy facility. It continued this way (some months increasing the amount of visits) for the first 5 years of her life.

Despite all of this therapy Paige still sat up late, crawled late, walked late, talked very late, has tone issues, fine motor issues and has severe sensory issues.

Looking back, do I feel that therapy was beneficial? No.

It was not beneficial for Paige but it was beneficial for me. I felt that I was doing everything to help her. How can we turn away services that are supposed to help our child? After giving birth to a preemie, is any parent in the right emotional state to ask questions as to the efficacy of therapy? I know I sure wasn't!

I have met a few parents who did not put their child through therapy. I fully expected to see a child who had not progressed as far as Paige but this is not the case. All of the children that I have met, who did not have therapy, are exactly where Paige is at... tone issues, fine motor issues and sensory issues.

I've always been upset about how much Paige (along with her Dad and I) had been put through for 5 years, only to be exactly where she (most likely) would have been without therapy. But, until reading the comment left by Future of Hope, I never realized how much I lost.

I'm writing this post so we all can openly discuss the early intervention services. I want new preemie parents, who are desperately searching the internet for information, to know that they have a choice regarding therapy. I don't want to sound as if I am criticizing those in the therapy fields, there is a place for them. But, what I really want to know is how others viewed their therapy time.

Eczema or Ring Worm?

2008-05-21T19:25:00.004-05:00

I noticed this round rash on Paige's arm tonight. It looks like both eczema and ring worm. Does anyone have any experience with this? I don't want to put steroids on it if it's ring worm because it will make it worse. Since Paige skin picks (due to her OCD), I surely don't want to make it more noticeable to her. But, I don't want to assume it's eczema and have it be ring worm, which is very contagious. I hate to keep her home from school since there is so much end of the year fun stuff going on.

So, any thoughts? Anyone?

A Zoo Day

2008-05-18T08:08:00.019-05:00

Nope, not this zoo.

A few weeks ago we headed to our local zoo. I have to admit... although we have a membership, I'm really not sure if I like the concept of a zoo. The idea of animals being kept in captivity bothers me. But, the idea of using the zoo as a teaching tool has me coming back. My husband and Paige will gladly tell you how I go on and on, the entire time we are there, about animal rights. Honestly, it's amazing what they will put up with in order to go see the animals. hehe

The first time we went to this zoo (when we had moved here-3 years ago), and I walked into this exhibit, I cried. It just doesn't seem right.

Now, 3 years later, watching Paige and Tyler with the Orangutan, I cried all over again. It still doesn't seem right.

Paige's favorite animal has always been the giraffe.

This zoo has quite a few peacocks. Paige loves to get up close with Daddy while he is taking pictures. Notice how far away I am. There is something that most people (unless you have been with me outdoors) do not know about me. I am TERRIFIED of birds. I know it's silly and I've tried telling my brain how ridiculous it is acting. But whenever I see a bird (or a duck, peacock, bat) that lovely fight or flight switch gets flipped to flight. Maybe it has something to do with the fact that I was attacked by ducks when I was little.

Hubby, however, has absolutely zero fear. Apparently the peacock doesn't have any fear either. He did not use the zoom for this shot.

This peacock speaks "Paige". She asked it to open its feathers and it did. She got a huge kick out of it.

Tyler, on the other hand, could have cared less. Yikes! We've been busted. He just turned 2 and he still has his pacifier. Any one have any tips on how to get rid of it that doesn't involve tears (from me or Tyler)?

We were able to take it away while he was on the zoo playground but he ended up putting the wood chips in his mouth. I vote for the pacifier instead.

From dragon slayer....

to princess. She has the wave down pat.

So, what happens when you have a husband who missed his calling and should have been a photographer? (At his real job he designs high end home theater systems for installers, which he loves)

After a day at the zoo you end up with a memory stick full of flower pictures. (below are only a few)

I'm not complaining though. He gets the coolest shots.

It was such a beautiful day. We all had a great time, especially Paige.

So, why is she running away?

It was time to go to the gift shop! Shopping trumps everything in Paige's world! hehe

**********May 19th update*********
Tyler fell tonight, face first on the kitchen floor. Below is a picture of his boo boo. You can see the outline of the pacifier on his face. I was hoping that he would refuse his pacifier because it would hurt to suck on it but... no such luck. Side note... his hair looks that way because I took a cool washcloth to his face in hopes of holding down the swelling. When I looked at the pictures on the computer, his hair looked greasy. I promise, my kids are clean. hehe

Head in Sand

2008-05-13T08:50:00.002-05:00

Ahhh, it's comfortable in here. The sand is nice and cool and it's dark.

There's a world out there? Really? Well, I think I'll just stay in here for a while.

You see, in here Paige isn't doubled over in pain after she eats.

Last year the doctor told us that her gall bladder did not contain gallstones so the pain must be in her head. And, doctors are always right. At least they are while I am in my home in the sand.

If I come out of the sand I will have to fight. Again.

I will have to scream. IT'S NOT IN HER HEAD. IT ONLY HAPPENS AFTER SHE EATS GREASY, OILY FOOD. HER GALLBLADDER COULD BE SLUGGISH AND SHE DOESN'T DESERVE TO BE IN PAIN.

What happens if they do listen to me? What painful test will she need? Is it worse than the pain after she eats. I can keep on trying to be careful of what she eats. Can I do that for the rest of her life? What happens if one day the pain doesn't go away after 30 minutes? Will she need surgery? I don't want her to have to endure another surgery? Which is worse? Pain after eating or surgery?

Thank goodness I don't have to come out of this sand and face this issue.

Can someone tell me how to turn off that little voice that keeps on whispering, "It's time to fight again. Get your head out of the sand"

Happy Mother's Day

2008-05-11T06:57:00.001-05:00

May all of you have the peaceful day that you deserve so very much.

Thank you for being a part of my journey as a mother.

Canadian IVF Study

2008-05-07T05:53:00.002-05:00

Helen posted this under the comments of another recent blog entry. I moved it to its own post so the comments can be kept separate and so the information would be easy to find for people searching.

Helen Harrison here, reporting from beachside at Waikiki where I just attended the 2008 Society for Pediatric research:

Here was an excellent study of IVF that bears on the discussion at hand:

[4305.1] The Cost of Irresponsibility

Bridget Spelke, Annie Janvier, Richard Brown, Danielle Vallerand, Keith J. Barrington. Pediatrics, McGill University, Montreal, QC, Canada; Obstetrics, McGill University, Montreal, QC, Canada.

BACKGROUND: Multiple births increase the risks of fetal, maternal and neonatal morbidities. The present epidemic of multiple births is partly due to assisted reproductive technologies (ART). In contrast to Canada and the US, many countries regulate ARTs. In these countries, single embryo transfer (SET) during IVF is the norm. However, mothers with a history of infertility have increased perinatal morbidity even when a single embryo is transferred. In previous studies, 10% of women who have IVF and SET deliver before 35 weeks (and are therefore admitted to NICU).

OBJECTIVE: To determine the impact of ART on resource utilization and outcomes in our NICU.

DESIGN/METHODS: We reviewed all multiple births admitted to the Royal Victoria Hospital NICU born between April 2005 and July 2007. Babies and mothers charts were reviewed. Using modeling and our patient demographics, we estimated how many days of complications could have been avoided if singletons were born to these mothers, had SET transfer been used during IVF.

RESULTS: During that period, 82 babies from ART multiple pregnancies were admitted to the NICU, representing 17% of NICU admissions.
4 mothers (9%) had previously experienced the death of a premature singleton.
42 mothers gave birth to 75 babies following IVF (15% of NICU admissions): average GA = 32.2wks, mortality 7%, intubation 34%, 60% TPN, 88% gavage, 6% BPD, 12% NEC / perforation.
If SET had been used in these women, and only10% would have delivered < 35 weeks, we could have avoided: 6 deaths, 5 severe IVHs, 270 eye exams, 4 surgeries for severe ROP, 260 intubated d, 643 oxygen d, 950 TPN d, 2001 gavage d, and 3082 NICU days.

CONCLUSIONS: Although some multiple births occur spontaneously, the current enormous increase in multiples is human-made, the lack of legal or voluntary restrictions on ART practices are responsible for 17% of NICU admissions, bringing about unacceptable financial and emotional costs. These admissions could be avoided. To reduce the number of multiple gestations, many countries have made SET the norm, and have drastically reduced the rate of multiples, while overall not affecting the pregnancy rate. We should take example from these countries.
E-PAS2008:634305.1

Sunday, May 4, 2008 9:15 AM

Platform Session: Clinical Bioethics (9:15 AM - 11:15 AM)
***

Guilt Revisited

2008-05-06T14:07:00.003-05:00

In previous posts I have talked about the guilt that I had after Paige was born. Not only was it overwhelming but it was unproductive and killing me slowly. It was hard but I let go of it and was quite proud. I have often been found on others blogs telling them that they too need to be free of it.

Yesterday, while doing the dishes, I turned to check on Tyler. Since he is usually half in the dishwasher removing the dirty dishes that I've just placed there, I was surprised to see him sitting on the kitchen floor. He was playing with a ray of sunshine that was coming through the window over the sink. He'd "catch" it and then let it go. He spent time holding up jars of food (the cabinet was now empty) and holding them in the ray of light. He even figured out how to hold the jar so the light would bend. I was in awe. (he's going to be a rocket scientist ya know-hehe) There he was, playing by himself, with sunshine! It was a beautiful experience.

So, boy was I shocked when I was slapped with the guilt that followed.

As I sat there and watched my breathtakingly adorable child find wonder with a ray of sun I was thinking to myself, "wow, he is so much easier than Paige! So this is what it was supposed to be like."

How dare I compare my children! Paige has gone through so much. It's no wonder why she had a hard time as an infant and toddler (any beyond). How dare I feel comfort that Tyler is so much easier.

I was a mess yesterday. There it was again. That damn guilt. I thought I had left it behind years ago!

As I tried to fall asleep I felt sick. I had a headache, my back hurt, my stomach hurt. Damn guilt.

Then I forced myself to say good bye to it again. Let's hope it's gone for good.

The Purpose of My Blog...

2008-05-02T11:40:00.002-05:00

Over the last several months my blog changed. As soon as there were discussions about limiting resuscitation based on gestational age, people became stuck. It didn't matter that we all have something in common. That one topic ruined the focus of the blog. People on each side of the argument held their position and carried it through to future discussions. I started to feel as though I couldn't talk about the difficult aspects of prematurity because people would just revert back to my feelings on comfort care. I also felt that I couldn't talk about the positives in Paige life because some people took my comments the wrong way. Although I feel that the topic of resuscitation is an important one, it is not the focus of my blog.

I originally started my blog because I felt that the publics perception (both the general public and those in the medical field) regarding the long term impacts of prematurity was so far off from reality that it was damaging.

For years preemie parents, upon discharge from the NICU, have been told that their baby will be fine and will catch up to their peers by age 2 or 3. For most, this is not the truth. Besides the research, and having a preemie of my own, I have been a part of support groups for 9 years and have listened to countless parents ask, "why hasn't my baby caught up?". They have real concerns that are not being addressed by doctors and their family members begin to think they are neurotic. Over time relationships suffer, marriages end and the child eventually gets diagnosed with something that validates the parents original concerns.

There is a disconnect between the perception of life as a preemie and the reality.

Why?

It is simple. How many preemie stories have you heard of, in the mainstream media, where the parents of an older preemie are explaining what life is really like for their child? I'd be willing to guess that you haven't heard many.

This needs to change.

False perception is damaging.

Below you will find a media release about an interesting survey, that fits in with the focus of my blog, taken (with permission) from http://prematurityprevention.org/.

For immediate release

Contacts:

Jennifer Montgomery, (502) 418-6819; Jennifer@m2-maximummedia.com

Ali Shaw, (502) 262-8580; ali@m2-maximummedia.com

APPROXIMATELY 62% OF PREGNANT WOMEN SURVEYED IN SELECTED AREAS OF KENTUCKY DO NOT VIEW PRETERM BIRTH AS A PROBLEM

Findings in Contrast to Growing Crisis of Preterm Birth

FRANKFORT, KY, APRIL 22, 2008 — A survey among pregnant women receiving prenatal care in Ashland, Lexington, Louisville, Madisonville, Paducah and Somerset finds that approximately 62 percent felt that preterm birth was not a serious problem or indicated that they weren’t sure. The finding stands in sharp contrast to the fact that preterm birth is the number one cause of newborn death, and a leading cause of serious, lifelong disabilities.

The survey was conducted by Healthy Babies Are Worth the Wait^R (HBWW), a three-year initiative and partnership of the March of Dimes, Johnson & Johnson Pediatric Institute, and the Kentucky Department for Public Health, aimed at reducing the rate of preterm birth in selected areas of Kentucky.

“We’re quite disconcerted by this finding, especially since preterm babies, even those born just a few weeks early, have more complications, such as problems with breathing, feeding, and their neurological systems,” said Ruth Ann Shepherd, M.D., FAAP, director, Adult & Child Health Improvement, Kentucky Department for Public Health.

This survey finding also stands in contrast to the results from a 2006 March of Dimes national survey in which only 11 percent of women felt that preterm birth was not a serious problem or were unsure.^¹

The preterm birth rate in Kentucky is 14 percent, compared to the national rate of 12.7 percent. Between 1994 and 2004, the rate of infants born preterm in Kentucky increased more than 24 percent. Nationwide, the preterm birth rate has increased more than 30 percent since 1981.

In addition, 34 percent of women surveyed in these six selected areas of Kentucky smoked during the month before becoming pregnant, which is much more than the rate of smoking among childbearing-aged women in the US (20.6 percent).^²

During pregnancy, approximately 22 percent of women surveyed in the six selected areas of Kentucky smoked, which is about twice the rate reported for the US as a whole.^³ Pregnant smokers reported smoking anywhere from less than 1 cigarette per day to 2 packs per day. This represents a quit rate from preconception to pregnancy of about 35 percent, which is much lower than the average quit rate during pregnancy in the US of 46 percent.^⁴ Less than 38 percent of the pregnant women reported that their health care provider had spoken to them about the importance of avoiding smoking during pregnancy. Smoking is a major risk factor for preterm birth, low birth weight, birth defects, and many other adverse health outcomes.

The purpose of the survey was to obtain up-to-date information on the knowledge, attitudes, and reported behaviors of pregnant women. The information will be used to: provide data about the needs of each of the communities to guide the HBWW Initiative, especially in the development of educational and media materials; and to help assess the impact of HBWW through a comparison of results before the initiative began and after it ends (the same survey will be repeated in 2009).

Healthy Babies Are Worth the Wait^R is helping Kentucky’s babies get the best possible start in life. Working with health care providers and community partners, the initiative helps moms-to-be get the care and information they need to increase the chance of having healthy, full-term pregnancies. It brings together the most current approaches for preventing preterm birth, as no single intervention is adequate to address the complex causes of this serious problem.

The goal is to reduce the rate of preventable preterm birth by 15 percent in the intervention areas. If successful, the interventions and lessons learned could make a difference if applied to other regions of the country with high rates of preterm birth. The initiative’s website, prematurityprevention.org, has sections filled with up-to-date information for pregnant women, those planning to become pregnant, health care professionals, and the general public.

For more information about Healthy Babies Are Worth the Wait^R, log on to prematurityprevention.org.

About the March of Dimes

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com, marchofdimesbaby.org or nacersano.org.

About the Johnson & Johnson Pediatric Institute, L.L.C

The Johnson & Johnson Pediatric Institute, L.L.C. (JJPI) is an education-based entity within Johnson & Johnson Corporate Contributions, which has a mission to make life-changing, long-term differences in human health by targeting the world's major health-related issues. Johnson & Johnson fulfills this mission, and other philanthropic efforts, through community-based partnerships. Healthy Babies Are Worth the Wait is among programs Johnson & Johnson supports that focus on a key strategy of saving and improving the lives of women and children. For more information please visit www.jnj.com. Educational materials for use by physicians or parents are available at www.jjpi.com.

About the Kentucky Department for Public Health

The Department for Public Health (DPH) is a part of the Cabinet for Health and Family Services. Through its expansive services, DPH reaches thousands of Kentuckians each year by developing and operating all public health programs and activities for the citizens of Kentucky. These health service programs are aimed at prevention, detection, care and treatment of physical disabilities, illness and disease. More information about DPH can be found at chfs.ky.gov/dph.

-END-

1 March of Dimes. (2006). National Brand Study. White Plains, NY: Author. Childbearing age is defined as 18-44.

2 Peristats, March of Dimes. (2007). http://www.peristats.com

3 CDC. (2004). Smoking during pregnancy. Morbidity and Mortality Weekly Reports, 53, 911-915.

4 Coleman, GJ & Joyce, T. (2003) Trends in smoking before, during, and after pregnancy in ten states. American Journal of Preventive Medicine, 24, 29-35.

Happy Birthday Bug!!

2008-05-01T10:43:00.006-05:00

Today my little guy turns 2 years old.

Even though we longed for more children, hubby and I could not bring ourselves to have another. We knew we could never forgive ourselves if another baby was born premature, like Paige.

But this pregnancy was a surprise. It was a long hard road too. I ended up carrying Tyler to 35.4 weeks.

He has been a gift, one that I treasure every day.

He makes us laugh every day!

His favorite person is the whole world... his sister!

I am not good at writing in this blog during times when I am very emotional. So, below you will find the journal entry from Tyler's private blog (written for family and friends). I wrote it on the day we brought him home.

We are ALL home. Wow that feels incredible to type!

Let's start with Monday, May 1st. I went in (at 8 am) for an amnio to determine lung maturity. After the test I was admitted to be monitored. I was 4cm at that time. I was having strange pains immediately following the amnio. I knew it had nothing to do with the amnio because it was no where near the site of the fluid draw. It did not feel like contractions either. But, I did know that something felt very wrong. The day was filled with us just sitting there, waiting for the results. Around 1:00 one of my OB's came to talk to us. 2 of the 3 markers for lung maturity were NOT there. She said that, if it was up to her, she would not do the c-section that day. But, it wasn't up to her and she told us that my regular doc (high risk OB) would be in soon to talk to us.

More waiting.

Around 3:30 my doc came in. That was the first time we had seen her that day. (she was actually on vacation but had planned on coming in to do my section) She was honest with us. She was really not sure what she wanted to do. On one hand she wanted to wait, due to the amnio results. On the other hand she was concerned that I would go into active labor and not know it (since I've not had any discomfort through any of the contractions that change my cervix). I explained to her that I was very sure something wasn't right because of that pain I was having.

She decided to check my cervix. I was now dilated past 5cm. Between the further dilation and the pain I was feeling, she was no longer on the fence. She told us that Tyler was going to be born very quickly.

On Monday May 1, 2006 Tyler was born at 4:38 pm. Then came the most beautiful moment of the past 35.4 weeks. Tyler announced to the world that he had arrived. He did so with the loudest cry we had ever heard. It echoed through the surgery room and back and forth through our ears like the most beautiful musical notes ever played. He weighed in at 6 lbs 10 3/4 oz and was 20.5" long. He did not immediately need any oxygen so Jason was able to hold him next to me for quite a long time.

Oh... that pain I was feeling... as my OB was finishing my surgery she leaned over the curtain that was separating us, to fill me in. Even with Tyler already out of my uterus, the spot where my first c-section (for Paige) was done, was paper thin. It was in that exact spot that I was feeling that pain. If I had not had Tyler that day, my uterus would have ruptured. How I was feeling that pain is still unknown. My uterus could have been bulging into an organ. Oddly enough... this whole pregnancy, my OB kept on saying that she would not let me go past 36 weeks because the risk of my uterus rupturing was too high (due to a previous classical c-section with Paige). She sure was right!

Tyler was then taken to the special care nursery. He was put on room air oxygen through a nasal canula. He never needed to be intubated nor did he need any surfactant, even though the amnio showed that he did not have the natural surfactant needed to breathe on his own.

By Tuesday 90% of the fluid in Tyler's lungs was cleared up. He was given a bottle by the end of the day and had no problems feeding at all!

On Wednesday night they stopped his IV fluids because he was eating so well.

On Thursday his billi count was getting a little high so he was put under the lights. He was doing so well that he was able to stay in our room all day Thursday.

On Friday his counts were back down and he was able to come out from under the lights.

Every day we were visited by the neonatologist, at least once a day. He was very respectful to Jason and I. He never talked down to us, knowing how much we had already learned over the years, and cited studies and research to back his feelings on Tyler's care. All along his only concern was that Tyler lost weight (his lowest was 6 lbs 2 oz) and was having trouble putting
some back on.

On Thursday night the nurse weighed him and he had gained an ounce. The neonatologist was thrilled.

On Friday he gave us the good news that we could take Tyler home-the same day that I was
released! Paige cried and said "I can't believe Tyler is a take home baby." We all cried.

The 40 minute drive home was beautiful. The sun was shining and it was warm and comforting. Paige and Tyler both took a nap in the car and it was a very peaceful ride home. Jason and I kept looking at each other, without speaking, feeling like we were in a dream that neither one of us wanted to wake from! We could *feel* how much each other realized how lucky we were to have 2 beautiful children.

New Tool for Doctors and Parents

2008-04-20T07:40:00.002-05:00

The NIH (National Institutes of Health) has created a new tool to help parents and physicians make decisions regarding the extent of care that will be given to a newborn premature infant (22-25 weeks gestation).

4 key bits of information are entered (weight or estimated weight based on US, sex, gestation and whether or not the mother received steroids before birth) and then a chart is displayed with statistics showing survival rates and the percentage of those with mild to profound disabilities.

Directly from the NIH website...

"Every day, physicians and new parents must struggle with the type of care to provide to extremely low birth weight infants, the smallest, most frail category of preterm infants. These infants are born in the 22^nd through the 25^th week of pregnancy—far earlier than the 40 weeks of a full term pregnancy. Many die soon after birth, despite the best attempts to save them, including the most sophisticated newborn intensive care available. Some survive and reach adulthood, relatively unaffected. The rest will experience some degree of life long disability, ranging from minor hearing loss to blindness, to cerebral palsy, to profound intellectual disability.

The study authors referred to the issue of providing intensive care for extremely low birth weight infants. For example, physicians and family members may be reluctant to expose an infant to painful life support procedures if the infant is unlikely to survive. In such cases, they may opt for “comfort care,” which provides for an infant’s basic needs, but foregoes painful medical procedures. In deciding the kind of care to provide, specialists at intensive care facilities traditionally have relied heavily on an infant’s gestational age—the week of pregnancy a premature infant is born. Gestational age is known to play a large role in the infant’s survival. For this reason, in many facilities, intensive care is likely to be routinely given to infants born in the 25^th week of pregnancy, whereas infants born in the 22^nd week may be more likely to receive comfort care."

Although I am encouraged to see that parents will be given a choice and hopefully some useful information, I wonder how many docs are aware of this information or will even use it.

It is a start nonetheless.

Vacation

2008-04-05T09:44:00.004-05:00

First off, thank you to all who contributed to Chris' ethical discussion. I have been fascinated with all of the responses and different view points. I enjoy being challenged and medical ethics has done just that for me.

I have received a few emails wondering why I have not commented. It would take too long to explain at this time, but in short, I am not in a place in my life that I can take a step back and be objective. Things have been on the rough side here and I am not able to sort out my thoughts or emotions. I have read every comment though and feel very thankful that most all have refrained from being less than polite. I honestly believe that we learn a lot about each other with each challenging topic.

On a another note... we are headed out of town to have some fun. Much deserved fun. Although I will have my laptop, I am going to try very hard to spend some time away from it.

Lastly, thank you to all who have continued to visit The Preemie Experiment. I've been somewhat absent but I assure you, I am not going anywhere. I still feel that together, with all of our various viewpoints, we can make the future brighter for the new crop of preemies being born each day.

I want to leave you all with a video that I found very interesting. Although not directly related to prematurity, I think Jill Bolte Tayler's experience will open some doors into the world of the human brain.

INSULAR

2008-03-27T19:32:00.003-05:00

This post is the first in a series (hopefully) of ethical discussions. Before continuing, I urge you to please read my previous post and respect my request. Without further delay...

Insular

by Chris and Vic

Although we share ideas and advice and offer group support on-line via blogs and support lists, we are known in the family of nations as American individualists. The history of the American colonies necessarily demanded this “rugged individualism” and pulling oneself up “by our "boot straps”. This is our ethic and our culture.

Contrast American individualism with the emphasis on community or “common good” in certain Eastern countries. The good of the many largely supersedes the good of the one and is reflected in the culture and in the law. This is the philosophical underpinning of “socialism”.

Herein lies the backdrop for an ethical question:

When we consider the resources needed to support the life of one of our medically fragile, high-risk and high-need preemies, do we ever consider how much could be done for entire communities or age groups with the resources that are now spent on one preemie?

This question has been stated in other ways. For example, How many children could be immunized or receive free or subsidized school meals with the money spent on the medical care of a single preemie in the NICU? One of the medical bloggers had a campaign to buy mosquito netting for countries where malaria is a community health issue—So, how many nets could be purchased with the funds used on one preemie in his or her first year of life? How many poor Americans could get health insurance for a year (estimate $6000) if preemie hospitalization expenses were redirected to that cause?

Next question: Does this move us? Would we agree to it? That is, the good of many should be placed above the good of an individual?

We have debated on this blog, and elsewhere, that parents should have the choice . . . Could we fathom that the community, not the parents, would make a decision that would limit or redirect the considerable resources spent on a preemie?

Does anyone have any experience with this type of ethical dilemma? Has anyone ever been part of a group that decided that the good of the many, in terms of medical dollars spent, should be placed above the good of the individual?

(Vic is my 12 year old adopted son--former 25-weeker, born in the toilet after his birth mom did crack cocaine.

He had severe brain bleeds and post-hemorrhagic hydrocephalus. He had 8 shunt surgeries in his first year of life--none since, though he has lots of "malfunctions" that do not progress to all-out shunt failure. He was cortically blind, but now he sees--though not like you and I. He has cognitive disability--I.Q. of 40 but he reads at a 3rd grade level. He has mild CP--walked at age 2 1/2. He has sensory issues, feeding/growing issues. He is partly toilet-trained . . . which didn't happen till this year. He has gross motor issues--poor balance which has improved with Tae Kwon Do training. He has hyper-acute hearing--certain noises seem painful to him. He has autistic features without the diagnosis of autism. (He is too friendly, too well socially-connected . . .) He has small motor deficits--cannot do buttons, snaps, tie his shoes, etc. He has severe visual-spatial deficits--still cannot tell first from last, top from bottom, or middle, beginning from end--all those spatial concepts are just alien to him. He perseverates . . . But he is a "bright" and beautiful boy--who is on the honor roll, with a 4.0 grade point average in his special ed class in middle school He loves music, he memorizes books, he loves public radio, especially Prairie Home Companion with Garrison Keillor. Though he doesn't see well, he is a champ at mini golf and at free throws on the basketball court. We don't know how he does it.

I was his nurse in the NICU, and I took him home to die--since his first 2 shunt revisions didn't work. His shunt abruptly worked on its own on day 5 in my medical treatment foster home. He went from in-the-toilet to hospice care to the honor roll . . . a roller-coaster ride is NOTHING compared to raising a preemie.)

Ethics Series

2008-03-24T20:13:00.002-05:00

For the past few years I have been very intrigued by ethics discussions-on all topics. Obviously the topic of prematurity-as it relates to ethics-is close to my heart.

I would like to start hosting a series of ethical discussions. I don't know how often I will be posting in the series. I guess it will depend on all of you.

First I am asking that we try, as best as possible, to keep the discussion civil. I've learned a lot about people and various topics through ethical discussions. This is my hope here. If we snap at each other or make it too personal, it won't work. I realize that arguing your point is normal in these types of discussions, but putting one another down or assuming there is a hidden agenda will defeat the purpose. The topics won't be easy to read or respond to at times. If you are feeling vulnerable-please don't enter into the discussion. Prematurity can leave a person raw at times. It is these times when it is best to come back to my blog during another discussion and leave the ethical topics for another time.

Secondly, leave your deity at the door. If we make the discussion about (insert your belief here) then it would not be a valuable ethics discussion, as everyones beliefs (or lack thereof) are different.

Lastly, if you would like to write a question for a future ethics topic, please email me at thepreemieexperiment.blogspot.com

In a day or so (when my sick child goes back to school) I will post the first topic in the series.

First up will be Chris (Chris and Vic).

Where's Stacy?

2008-03-19T12:23:00.002-05:00

Insanely busy.

Fun stuff mixed with obligations.

I'll be back soon.

The Wait Is Over

2008-03-11T11:31:00.002-05:00

The wait is finally over. We received the results of Paige's bone density test. No osteopenia. Yeah!! Woo Hoo!!

Yesterday we met with the endocrinologist to discuss her delayed bone age . She wants to take a wait and see approach. She is not a big believer in growth hormones unless the child completely stops growing. Even though Paige is delayed by 1 or 2 years and has fallen off of her growth curve, she is still growing. We are a tall family (women are all 5' 8" and taller, men are all over 6' 3"). The endocrinologist was sure Paige would not reach her potential but, like I said, at least she is still growing.

One very interesting topic that the endo and I discussed was Paige's NICU diagnosis of congenital adrenal hyperplasia (CAH).

A little background.... at one point during her NICU stay Paige's body stopped making urine. We were well out of the "honeymoon phase" (a term I truly dislike) when it happened. They performed a blood test called ACTH. When the results came back one of the neos sat us down and explained that Paige had CAH. We were devastated. Actually, that's an understatement. It was the nail in the coffin for me. I shut down. I couldn't believe this was happening to her.

They started her on steroids. It didn't work. She still wasn't making urine. They started her on another steroid which finally worked.

One day we were standing by her incubator and the neo approached us. (I'm pretty sure I looked like a walking zombie) He started trying to tell us what we would have to watch for as she got older and stressed to us that she would need steroids at the first sign of illness. He was with us for awhile and I'm pretty sure he talked about other things but I wasn't listening. I couldn't help but focus on the head neo watching from a distance. He was shaking his head.

As soon as I had a chance (without offending the visiting neo-oh how polite I was back then) I went and talked with the head neo. He told us that he was 100% positive that Paige's urine (or lack of) issue was a direct result of her prematurity. He went on to tell us that he did not think she had CAH. He said that he has seen it in many cases.

Sure enough, the ACTH was repeated and it came back within normal limits. Paige was weened from the steroids (in 2 days I might add-ugh) and she has been fine ever since.

A happy ending? You bet. But, because of lack of knowledge on the part of the newer neo and the fact that the head neo allowed him to "run with his suspicion" (despite knowing better), Paige had to have a few transfusions (ACTH requires a lot of blood). She also had to have the test repeated after her discharge. For the first year of her life we had to weigh diapers and mark down every bit of fluid that entered into her mouth. If she spit up, we had to try to catch it and measure how much came out. As if being a preemie parent wasn't stressful enough, we had to watch our child every bit of the day to check to see if she was going into adrenal crisis. You can't even begin to guess how many times we had to go to the doctor because her urine output was low. (which is normal)

So, as I am talking to the endocrinologist yesterday she is rolling her eyes. She told me Paige's story was not uncommon. She sees this often with inexperienced neos. She did say that the steroids were most likely needed to jump start her system but she was saddened to hear how it was all handled.

Big Climb for Luekemia

2008-03-04T10:59:00.003-05:00

My husband and I donate to a few charities throughout the year. Our one major criteria is that the charity MUST provide support to existing patients and their families. Although research dollars are important, equally important are the survivors.

I urge all of you to read about The Leukemia & Lymphoma Society and how they are working for a cure yet also supporting the survivors as they deal with the long term impacts of their treatment.

If you are moved, please also consider helping Traci reach her fund raising goal.

http://www.active.com/donate/2008bigclimb/bc08THamilt

Thank you,

Stacy

(Tk... good luck!! I will be thinking about you on March 16th. My legs are burning just thinking about it!)

I Hate The Wait

2008-02-28T20:45:00.002-05:00

Dealing with medical stuff seems to come in waves in our house. When Paige was little we were at a different specialist every week. At one time she had 9 different "ologists" and we were hit with scary news constantly.

But, since she has gotten older, the shit hits the fan in waves. Unfortunately, when it does... it splatters. I have my shield up but I'm worried.

We are in a holding pattern right now. Paige had her bone age x ray done a few weeks ago. She was 9 years 3 months at the time and the scan showed she was delayed up to 2 years. We are going to see the pediatric endocrinologist in 2 weeks.

Yesterday she had her bone density test. Not only is she at risk for osteopenia of prematurity, there is some new information out that being on some SSRI's can cause rapid bone loss. Of course she is on one of the SSRI's on the list. I watched the monitor, as the scan was in progress, wishing I was a doctor so I could have an immediate answer.

Now we wait.

I hate the wait.

"Paige, Stop Staring!!"

2008-02-26T20:41:00.002-05:00

As we entered into the restaurant tonight we were greeted by an adorable teen aged girl. Paige (9 years old) loves teenagers so I didn't think anything of it when I noticed her staring at the hostess. As the hostess turned around I realized why Paige's eyes were fixated on her... she was missing an arm.

I threw Paige my best "mom glare" but I couldn't break the stare.

I tapped her on the back. That didn't work either.

As we sat down I was crossing my fingers that Paige could use some restraint and at least wait until the hostess walked away before blurting out, "Mom did you see her? She's missing an arm!" No such luck.

She immediately asked to go to the bathroom, which I was happy to allow so it would give me time to talk to her about her staring. But, as soon as we got in the bathroom the questioning started...

"Mom, what happened to her?"

"Mom, did she have a freak accident or was she born that way?"

"Mom, can preemies be born without an arm"

As soon as she took a breath, I was able to interrupt her. I reminded her that it isn't kind to stare. "But Mom it's fascinating. Did you see that her other arm is really big?"

I reminded her how much she hates it when people stare at her. I talked about times when she is in a wheelchair or when she has visible tubes (PH probes) and kids have approached her. She has been mortified.

She tried telling me that it was her OCD and that her thoughts were telling her to stare. I explained to her that it was merely human nature and her extreme curiosity.

I never know what to say when she stares. I never know what to say when she sees someone in a wheelchair and yells, "I wonder why their legs don't work?"

To the parents who have kids with various abilities... what would you like parents to say to their children? Do you want to be approached with their questions? What do you wish parents/children would not say?

Respecting Difference of Opinion

2008-02-24T20:52:00.004-05:00

Last year I wrote a post explaining why I felt the need to speak out. In it I talked about an encounter, with another preemie mom, that changed my life.

Here is a part of the original post...

**************
One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.

When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).

I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,

"I wish someone had given me the choice."

She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).

The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.

Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."

My world changed that day. I was able to see "the other side".

**************

Since starting my blog I have met so many wonderful people. With each new relationship came an understanding that we have some things in common. With some it was prematurity or pediatric mental health issues. Some it was a love of scrabble or even long discussions on religion (or lack of).

But, with all of my old and new friends, I do not share ALL of the same beliefs as they do.

Did that stop me from getting to know them? No.

Did that stop me from being friends with them? No

Did it stop me from being able to understand how they feel differently than I do? No

To argue ones point or opinion is one thing. Being nasty to another human being is another thing.

If someone takes a different side on an issue, are they not worthy of being treated with respect?

If you only surround yourself with like-minded people, and treat all others with nastiness and hatred, you will never grow.

Treating Pain In Tiny Patients

2008-02-21T21:45:00.003-05:00

Helping Infants Suffering From Pain

The Thinking's Changing About Whether Babies Feel Pain — And How To Treat It

NEW YORK, Feb. 21, 2008

Treating Pain In Tiny Patients

Premature babies are often born with painful medical problems. But doctors are now learning how to detect and treat pain in these tiny patients. Sanjay Gupta reports. |

In three short weeks of life, Josie Toland has undergone a lifetime's worth of medical procedures. She was born two months premature and developed serious lung problems, Gupta reports.

She's had tubes inserted to breathe and to eat, and constant sticks in her heels to draw blood.

"Babies have an average of 10-to-15 painful procedures per day in this unit if they're under 30 weeks gestation, or if they're really sick like Josie was," said Dr. Whit Hall.

Besides fighting for her survival, doctors have been wrestling with another issue: With everything that's been done to her, how much pain is Josie feeling?

As recently as 15 years ago, it was thought that newborns were not developed enough to feel or remember pain. Amazingly, newborns often received little or no anesthesia for most medical procedures - even surgery.

"The folklore became babies don't feel pain, anesthesia is bad for them, let's not give anything," said Dr. K.J.S. Anand.

Gupta said: "What you're describing must have been torture for these babies."

Anand is a leading researcher on how to detect pain in these tiny patients who can't speak and spend most of their time sleeping.

Doctors monitor some of the physical signs of pain, like blood pressure and heart rate, and the obvious behavioral signs like crying and facial expressions. But how do you know the difference between a cry of pain or a cry for hunger?

"You just can't stand over an infant 24-7 and watch them. And that's why I thought a machine system would be pretty good at handling some of these problems," said computer scientist Sheryl Brahnam.

Brahnam works with facial recognition technology to identify key spots in a baby's face that signal pain.

"It's wrong to think that every time a baby experiences pain, they'll cry. They're not. Sometimes all you see is a bulging forehead," Brahnam said.

She's working with facial recognition technology to identify key spots in a baby's face that signal pain. The hope is that one day a camera would constantly monitor the faces of newborns and alert doctors to even the subtle signs that something is wrong.

"It gives the infant a voice, it lets the infant cry out, 'I'm in pain,'" Brahnam said.

Detecting pain in newborns is one thing. Treating it is another.

Unfortunately, the drugs to treat babies' pain are meant for adults. Like morphine and methadone. Even today there is reluctance by doctors and parents to use them.

"Yes, I think there are still medical physicians, nurses, who hold out that babies probably don't feel pain," Anand said.

Some of the techniques to calm babies are tried and true: creating a quiet atmosphere with low lights and swaddling them for comfort.

It's all working for Josie.

"Can you say without a doubt, that Josie is not in pain right now?" Gupta asked Hall.

"I can. I'm basing that on she seems comfortable, she's not crying, she seems to be happy," Hall said.

Evidence that years later, children and adults remember the pain they suffered as babies. Studies show they're more pain sensitive and can have higher rates of ADD.

*****************
You can find the article, including photos and video, here
Thank you to Nancy for the link to this article.

First Do No Harm

2008-02-18T21:23:00.002-05:00

Between the conversations going on in the comments section of the post titled "Do Preemies Feel Pain" and a recent conversation I had with someone in the field, I am left wondering what "first do no harm" really means when it comes to neonatology.

I do have a hard time thinking that neo's are out there doing harm on purpose or maliciously. I'm sure there are some, but for the most part, I am the type of person who feels that there is good in all.

So, that leaves me questioning how they do it. Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?

Do they wonder what happens to our little ones? Do they really want to know? Does the knowledge of the adverse outcomes change the way they do their job?

Am I telling my story for nothing?

Tammy asks...

2008-02-13T22:44:00.002-05:00

A not so simple question...

Hey Stacy,

Ever since I started reading your blog, it seems like I know you. At least I know where you are coming from, since we are both dealing with the aftermath of prematurity. I have been wanting to ask you if you have found a reply to that question that everyone asks, "How's Paige doing? She looks great." I'm asking this because I have yet to come up with an appropriate response. Whenever someone asks "How's Daniel doing? He looks great." I just let out a big sigh. I never say the right answer. I don't want to glaze over it, like he's a walking miracle but at the same time, I don't want to get into his medical issues. And somehow I always end up walking away upset. Because normally, I say yes, he's great. (Daniel is usually within ear shot). If they start asking more questions, I feel an obligation to say he has some issues, but we're dealing with them. I try to keep the conversation light, but people can be persistent and when you tell the whole truth, I tend to get feedback like, "we'll you didn't think he wouldn't have problems. It could be worse." I am starting to think that people don't want to know the truth about prematurity. I just wish there was a good reply for this simple question that I can't seem to avoid and expect to hear for the rest of my life. So, if you have found the answer to this question, please share it with me. Thank you and thank you for all your work. Your blog is truly an asset to the preemie community.
Sincerely,
Tammy
mom to Daniel, 6 (24 weeks)
PS, if you don't have the answer and want to share the question or content of this email on your blog, you have my permission.

Hi Tammy,

Your question of "what to say when asked how he (Daniel) is doing" is not so simple. For me, it changes both by the day and by who is asking me. Now there is another factor... whether Paige is with me or not.

I first wrote about it here How is she doing?

If Paige is not with me, no matter who asks, they get the truth... all of it. As I start to talk I can tell if my words are going to fall on deaf ears. I'm sure you know the look. It starts out with a glazed look in their eyes and then their facial expression says, "I didn't want to know the all of this. I just wanted you to tell me she is fine so I can go back and tell the world that all preemies turn out fine." To these people I usually shorten the update, but still tell the truth. Years ago, I never used to be honest. I always said that she was "fine" and left it at that. No longer do I do this though.

Again, if Paige is not with me, and the conversation turns to resuscitation, I am honest about my feelings. I never try to make others understand how I could feel this way, but I do make my feelings known.

Now, if Paige is with me it gets trickier. My standard response is "she deals with the typical long term issues related to prematurity and has escaped some too." and then I usually go into being the typical proud mommy and brag about her school accomplishments and how she is such a wonderful big sister. Some people will ask me to elaborate and I ALWAYS ask Paige for permission first. Always. Last year Paige asked me to check with her first before I talk about her. She said that it didn't "really" bother her but I could tell that she was feeling something that she couldn't verbalize. I honor that request. So far, every time I've asked, she's gladly agreed and usually starts to explain on her own. It's fascinating to watch.

But, we came up against a new situation recently. Paige was the star student of the week a few weeks ago. I had to write a letter about her and include pictures. The letter was to be read by the teacher, to the entire class. Paige asked me to talk about her early birth in the letter and include a NICU picture. I wasn't comfortable with this because I wasn't going to be there to explain what all of the wires and tubes were for. And, she is now of an age where the kids tease each other. Instead I chose to include her birth footprints, which are super tiny of course.

As she exited school that day I could tell something was wrong. Paige told me that they had a substitute teacher and that the sub read her letter. After the letter, the sub asked her if she was OK now. Paige responded by telling her everything that she deals with. Everything including the mental health stuff. I could tell that Paige was upset about this exchange. She has no problem telling docs anything they need to know but this was asked in front of 20 of her peers. Paige told me that she didn't want to answer the teacher but didn't know how to avoid it. Her and I sat down and came up with a plan in case that happens again and I told Paige that I was sure the sub learned her lesson. I wish I could have seen her face when she heard my sweet beautiful little girl talk about her life.

I wanted to be angry. I really did. But, all it did was reinforce my belief that the general public is seriously misinformed on the long term issues related to prematurity.

The above represents my experience Tammy. I hope everyone will offer their advice to you on what to say when someone asks, "how is he doing?"

Do Preemies Feel Pain?

2008-02-10T09:07:00.000-05:00

An article was printed in today's NY Times, titled "The First Ache".

(Please forgive me for not including any of the article. I am not sure how much I am allowed to copy into a public blog.)

The article tackles the question of whether or not preemies (and fetuses) can feel pain and whether or not it alters the child.

This argument is not a new one and has been known to start comment wars on blogs. I am asking everyone to be mindful of others thoughts and research on this topic when they post a comment.

Dr. Phillip Gordon (neonatologist) wrote his feelings on the topic in a post titled "Debunking the Pseudoscience of Infant Memories"on his blog Tales From the Womb. I am not including a link to his blog to incite a war on docs. I simply want to show both sides of the coin.

I am not a doctor nor am I qualified to comment on the science behind the issue. I am, however, a mother of a premature child who endured her entire NICU stay without pain meds.

I find it hard to believe that prolonged exposure to pain would NOT cause change in a child.

Stuck On Funk

2008-02-09T10:53:00.000-05:00

Over the past 9 years (since Paige's birth) my emotions have run the gamut.

Some days my meter reads happy or content.

Some days my meter reads angry or sad.

During these 9 years, the needle has even landed on funk. The funks stays for a few days and then I am able to pick myself back up and move on. It has never lasted for more than a few days and has never happened more than once or twice a year.

Unfortunately, my needle seems to be stuck on funk right now. Rusted in place. It's been this way for a few weeks. I can't pinpoint what caused the needle to stick but I'm desperately looking for the oil can.

And the verdict is...

2008-01-31T20:46:00.000-05:00

Dysautonomia

We met with the neuro's PA today. Obviously she cannot diagnose, but she has dysautonomia herself and said that all of Paige's symptoms fit, along with her prematurity. She did strongly suggest that we get a 2nd opinion with a different cardiologist. She would like Paige to, at the very least, have a Holter monitor. She did mention that another option would be for Paige to wear an event recorder, which would be worn for a longer period of time in order to increase the chances that it would catch some activity.

She said that most kids grow out of it by the time they are finished with puberty or into their early 20's.

As far as medicine goes... since Paige is not passing out or falling, we can hold off on medicine. Obviously this may change if any cardiac issues are involved. She also felt that there is no reason to push for a tilt table test if the cardiologist doesn't see a need for it. She said... "if it looks like a duck, and sounds like a duck... let's call it a duck."

I found myself reflecting on the discussion under the previous post. Could we have skipped this appointment and continued to play the "wait and see" game. Yep. Do we need to do anything different in Paige's life? Nope.

Could I have relaxed if I would have waited? Nope.

Do I feel at ease now, confident that the diagnosis is correct? Nope.

I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn't act quick enough.

Why is this?

A Day at the Doctor

2008-01-27T08:26:00.000-05:00

Friday was doctor day at our house.

First up... Tyler (20 months old).

A few months ago hubby found a lump on Tyler's leg. It is located approximately 3" above his knee, in the middle of his thigh, and was about the size of a pencil eraser. It seems to coming through the muscle. A few times, as I was feeling it, it almost felt like I pushed it back through the muscle. There was days when I didn't feel it at all. When we first found it we decided to take a "wait and see" approach. We waited so long that we forgot about it. On Friday, as I was getting Tyler into his high chair, the lump was obvious. It has gotten bigger.

Off to the doc Friday morning who felt it was not in a spot that would be indicative of anything scary. When he felt it, he said that it was not elongated. But, there was a few times when I had felt it that it did seem oval. I wasn't sure if I was feeling the muscle or the lump, but at times they seemed to be one piece. Doc chose to play it safe and send us to a pediatric orthopedic surgeon. The soonest they could get us in was at the end of Feb.

Next up... Paige.

After Paige got out of school we headed back to the doc. We talked to him about her dilated eyes and how her fatigued has returned. He felt that her eye issue was due to the Zoloft. He says that he is seeing it more and more in adults. He does not agree with kids being on Zoloft (he's not a pediatrician) but we have no choice. Paige's anxiety disorder and OCD is too severe at this point. But, since we've seen this before (eyes, fatigue, dizziness, palpitations, etc) he suggested seeing her neuro. Seeing the neuro is what we had wanted to do but getting an appointment in less than 4 months is impossible. Doc told us that he would call him personally and see if he can speed up the process.

We also talked to him about the recent info coming out about SSRI's and bone loss.

http://www.sciencedaily.com/releases/2007/06/070626115436.htm

Although I realize that the studies only discuss older adults, and do not mention pediatric patients, the results still have me concerned. Preemies, especially those born before 30 weeks, are at higher risk for osteopenia.

http://www.nlm.nih.gov/medlineplus/ency/article/007231.htm

Since Paige was born at 25.5 weeks, had TPN, many doses of various steroids, diuretics, etc., I asked the doc if it would be worth it to do a bone density test. Since he hadn't heard about the correlation between SSRI's and bone loss he said that he would see what he could find and then send us for the test.

With all of the talk about Münchhausen's, and with our past experience (not with this doc), I decided to have my mother in law come with me to both appointments. It was comforting having her there and a huge help. When it came to Paige's appointment, she let the doc know that she was the one who was very concerned about Paige's eyes. She had a great suggestion to bring pictures of Paige, with other children, to show how different her eyes are compared to the other kids. It's sad that I had to use energy to worry about what other people may be thinking, but I sure am glad that she is so supportive!

Now we wait.

Get The Diagnosis

2008-01-18T10:28:00.000-05:00

(This discussion was started in the comments under a previous post but it is very important so I am making a post out of it.)

Helen Harrison wrote: "About 20 years ago, a friend of mine was sent to psychotherapy because of her infant preemie son's eating disorders -- which the docs felt was due to her failure to bond with him. The child's feeding problems were finally solved after gall bladder disease was diagnosed and his gall bladder was removed."

Terri w/2 wrote: "Helen - my best friend was also sent for psychotherapy because of her daughter's feeding issues. The hospital videotaped her attempting to nipple feed her daughter and then told her to go home for a few days while they took over. They had no more success than mom did, however, they still blamed mom for the baby's feeding issues.

She was later dx with cerebral palsy, had a fundoplication done (twice) due to severe reflux and a g-tube placed at age 2.

I hope that medical care in this area involving preemies has since changed, as this caused this very devoted mom a mountain of anguish."

Joan wrote: "I've been thinking about this story since reading it last week. It's one more example of what preemie parents go through over and over and over - dealing with so many issues that don't have appropriate identification or treatment - in the context of the health care system - and enduring treatments or attitudes that inadvertently become abusive, although the abuse is stemming from blatant ignorance rather than intentional cruelty.

Lack of real help is SO prevalent for the many issues our preemies face."

Chris and Vic wrote: "There is this doc on public radio--Zorba Paster (The Longevity Code), who always says, "You've GOT to get a diagnosis". I don't agree with everything Zorba says, but I think he is dead-on with insisting that people who call in have got to go back to their docs and get a diagnosis.

In the case of our ex-preemies, if there is no diagnosis, what Joan says happens will happen again and again. Blaming parents. Yes, it is an abusive practice--and I would not let any doc off as easily as Joan lets them off. I think it is abusive, and ignorance does not absolve . . .

Instead, if a diagnosis is doubtful or long-in-coming, those docs should document, document, document what has been ruled out; what parents suspect; what docs suspect but cannot prove with conventional testing. Docs should go on to write, to document, that they do not blame parents, that they believe that the parents have some insight into the problem, etc.

The docs should write a tentative diagnosis. They should write into the record the lab error rate for the tests that have been done. They should write that they have referred the child on for a 2nd or 3rd opinion to such-and-such specialist. They should write in the record (a commitment) that they will follow up in 6 months or a year, repeating the tests, or giving the child a trial on a med, or giving the child more time to mature or show additional symptoms, or whatever.

Often enough, the parents are sent home with their child having symptoms, even worsening symptoms, and the parents have to figure out a way to deal with it on a day-to-day basis. And the docs get to blame them for their creative solutions, or for whining about the problems, or for their angry or depressed reactions to the lack of a solution.

Come on!!! Play fair!!! Follow up. Keep sleuthing till you find a diagnosis. Repeat the tests. Refer to a specialist. Do whatever needs to be done. Don't dump on parents and then blame them for the difficulties they have in coping."

******************

For me, this is a very sensitive subject and one that still makes me tear up. Many of what has been talked about, happened to us. I think I've blogged about this before but forgive me if I am repeating myself.

Many times, through many preemie issues, hubby and I were accused of everything from being nervous parents all the way up to Münchhausen's. A few examples that really stick out in my mind.

# 1. When Paige was about 3 weeks away from turning 4 she passed out on a swing, twice. I talked to the doctor and described Paige's behavior before, during and after. He tried to convince me that Paige was just being silly. When I asked about seizures, he chuckled and said that she clearly did not act as if she had a seizure.

The next day we had a scheduled appointment (unrelated) with another doc in the practice. We brought up our concerns about the swing incident. She looked hubby and I in the face and told us that we are going to have to stop treating her like a preemie.

2 days later Paige's OT told me that she had concerns over Paige's behavior. When I told her about the swing incident, she told me that I was not over reacting.

I called the doctor and demanded that he order an EEG. He refused. I told him that I felt that he was being irresponsible. He was quite angry with me. The day after the EEG, he called me, apologizing up and down, while telling me that he EEG was the worst he had seen.

2 days later we went to another neurologist, who repeated the test. He told us that the original test must have been performed incorrectly. As the tech was hooking Paige up, the neuro even commented that she looked too good to have an EEG that severe. He felt that we were looking too closely at her because of her prematurity. After the test the neuro came in, shaking, telling us that he didn't understand how Paige was walking and talking. He showed us the tracings... continuous spikes. We left with a diagnosis of Epilepsy.

#2. When Paige was about 4 she had an odd fever. We aren't ones to freak out over fevers so we just kept an eye on her. About an hour later I checked it again and it was higher. I gave her Tylenol. She started complaining that he joints hurt. She laid down on the couch. Then I knew something was wrong. When Paige was that age... she NEVER sat still. After a few hours I called the doc, explaining that I gave her meds-alternating Tylenol and Advil but her fever was 105, and she had joint pain. He told me that kids get fevers and made me feel like a fool for calling.

2 hours later I called him back because she was very out of it, despite being hydrated. Doc told me, "listen, if you bring her to the hospital they will have to do a lumbar puncture and you don't want that."

About 3 hours later Paige was fine. Fever gone. But, she was not the same. From that day forward, she lost the ability to walk without being fatigued. Other odd symptoms came on but the docs would say, "well she is a 25 week preemie-what do you expect?" After a year filled with begging docs to help, they all gave up. More than one of them suggested we head to mayo clinic but would always follow that with a reminder that she is a preemie. Ugh. My point was that she changed after that fever.

A friend mentioned the possibility of Paige having a mitochondrial issue. I talked with docs and a few of them agreed that she fits the criteria. We finally got an appointment with a geneticist. I came very prepared, huge typed packet of info. He agreed that her issues were indicative of mito, he even pointed out a feature that we hadn't noticed. Paige was 5 by this time. He spent a short amount of time talking to her and then turned to me and said, "she is too intelligent to have mito." I tried arguing that not all mito issues present with cognitive delays but he stopped me and said, "do you know what test would have to be done?" Of course I did... a fresh muscle biopsy. By this point, after quite some time researching it all, I even knew where to go for it and how you should not waste time getting a frozen biopsy-which meant we had to head to Cleveland. He then said something that caused me to fall apart as an advocate... "Mom, why would you want to put her through that? It's very painful."

I gave up. I talked with 2 docs who were not in the mito "field" but were very interested in it and had spent some time researching. They both said that the best thing we could do was wait until she crashed again and then push for the test. They both also told us that she may not "crash" again until puberty.

Waiting sucks.

There are so many other instances that docs have dismissed our concerns over the past 9 years. I've learned to fight for help but it is very draining. I shouldn't have to fight.

On the flip side, in recent years, doctor's attitudes seem to be getting better. I didn't figure it would happen since we moved from one of the largest cities in the U.S. to a state that is lacking in pediatric care. But, it seems that Paige's docs, here in our current state, believe that there are long term effects of prematurity and do not turn up their nose when we walk in. It still isn't perfect, but it's better.

I wish I could say that our new positive experiences are the norm but I know better. I read, on the preemie groups, about the troubles others are having and how they are not being taken seriously. Since starting my blog I've gotten a few emails on this very same subject.

I do agree with Zorba Paster and Chris who say... "Get The Diagnosis". I just wish it wasn't so hard.

Where Did I Go?

2008-01-11T12:27:00.000-05:00

Last year I wrote about hubby, in a post titled "Where did my husband go?"

Recently I've been thinking... where did I go?

It all started a few weeks ago. Hubby and I were watching T.V., after the kids were in bed, when he tickled me. I laughed and hubby said, "I love hearing you laugh." I loved it too but it seemed a bit foreign. Since we entered into the world of prematurity we have had many good times as a family. It hasn't all been hard. But, I do remember when I use to laugh all of the time. I was that person who woke up in the morning with a smile on my face and ready to go. You know the type, tries to spread morning sunshine to everyone. (now I want to strangle that type of person)

Many people change after having (typical/healthy) children, but their "core self" seems to stay the same. You drop your child off at the babysitter (or put the kids to bed); you and hubby then jump back into your former selves and have a nice time while out to dinner or even simply watching television together. Yes, you are not the exact same person that you were before kids, but you can get back to that place in your lives with a bit of ease.

When you have a child born under different circumstances or have a child with long term issues, the lines surrounding your "core self" change. Blur, if you will. The blurred perimeter gets wider as the years go by until the core itself is also blurry.

Who was I? What did I do with my time before doc visits, research, kissing boo-boos, med management, etc.? I know I used to laugh a lot.

What did I do before prematurity was my focus? I know I had other passions. I know I cared about other causes.

Last night I spoke in front of the school board. It was unscripted (something that never makes me nervous-I know, I know, I'm odd). As I was talking, it started to come back to me. Wait a minute, maybe *I* am still in here somewhere!

The past 9 years have changed me. There is no denying this. Some areas of change were for the better and some were not. I love my children and would gladly accept the typical change one experiences after becoming a parent.

But, after experiencing the fun and laughter alone with hubby and the rush of publicly speaking about other passions, I'm hoping the blurred perimeter of my core self continues to narrow!

One Year Later

2008-01-08T00:00:00.000-05:00

Today is the one year anniversary of the day I started my blog. I still can't believe that one whole year has passed.

I started this blog driven by extreme emotion.

Extreme sadness-after 9 years of listening to new preemie parents at the beginning of their journey. I was, and still am, so very shocked that the preemies of today seem more affected by their prematurity, while they are still small. A diagnosis of cerebral palsy seems to come much sooner than it did 9 years ago (Paige's generation). I'm amazed at how many kiddos have brain bleeds now, compared to 9 years ago. Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago? Hasn't technology improved? Why are preemies still being diagnosed with cancer? Cancer that is a direct result of prematurity. Why can't this be stopped?

Extreme frustration-in our daily dealings with living life with a preemie and the long term issues related to prematurity. Not being able to get help for our child, in many areas, due to the lack of knowledge that the medical community possesses regarding older preemies, crushes our hearts. We are not alone. Preemie parents have little support as their child ages. School issues, breakdown of marriages, insurance issues, financial woes, sibling stress... the list is much longer and affects the extended family and the entire community as well.

Extreme disgust-at the media for painting a picture of prematurity that is so far from the truth that it is a crime.

Extreme anger-after hearing not one, but many neonatologists, talk about how preemies catch up to their peers by age 2/3. Hearing them speak to parents about their child breezing through the NICU and how that criteria means that they will be fine later in life.

And, the most disturbing aspect to prematurity that caused me to go over the deep end and start a blog was learning that no one, on a large scale, is following preemies to see what they are facing. How can treatment in the NICU improve if the current experiments are not being followed? Honestly... can someone fill me in as to how parents and doctors are making informed decisions if the long term (beyond age 2/3) outcomes are not studied.

I just went back and read my first post, written one year ago. Until today, I had not read it, since the day I wrote it. Wow, it was pretty raw. I can still remember the all of the above emotions running through my fingers as I typed.

I've learned a lot over the past year, about others and myself. I've learned that the world needs balance. We all don't feel the same way on every issue and that is ok. We are passionate about our kids and prematurity. That passion fuels our emotions. I've learned that I had a lot to learn. I encourage all to read the blogs that are listed on my side bar. Each and every one of them has brought something into my life and allowed me to continue on my journey, in an enlightened manner.

This blog would nothing with out all of the people who have commented here over the past year. As much as I would love to thank everyone by name, I am sure I would accidentally leave someone out. Whether you have left your mark here once, or hundreds of times, please know that I appreciate all of you!

I have received many sweet emails from parents who were thankful to have found this blog. I have shed tears reading your letters and hearing how you thought you were alone and how you have been helped by all of us here.

Then there are the letters from adult preemies who are now able to understand why they feel the way they do... I am so very glad you found your way here! And, you all have helped me to better understand Paige. I have made changes to the way I parent her after hearing your stories. Your voices and experiences are incredibly needed. I am honored to know all of you.

Finally, my hope for this blog is that it can be used as a tool.

If you are a parent of an older preemie who has not caught up to their peers, you will find that you are not alone.

If you are an adult preemie, I hope you that you will find some answers here.

If you are a member of the media, please notice that prematurity does not end at the NICU doors.

And, if you are a neonatologist, please spend some time reading about the long term issues that our kiddos deal with on a daily basis. Please use this information to help future preemies. Please don't just focus on getting them healthy enough to go home. They have their whole life ahead of them and deserve improved care based on outcomes of preemies past.

No More Pictures On My Blog

2008-01-05T11:10:00.000-05:00

I knew better than to put pictures on my blog. I really did. Against my better judgment, I decided to do it anyway.

Shame on me.

But, to the person who used Paige's picture in a YouTube video without asking me..

SHAME ON YOU!!

I will be spending time removing all of the pictures from past posts. I do not have the time or energy to adjust the wording though, so some posts will be a little confusing to readers who do not see this post first.

Is ROP on the rise?-A Denmark Study

2007-12-31T12:49:00.000-05:00

Treatment for Retinopathy of Prematurity in Denmark in a Ten-Year Period (1996–2005): Is the Incidence Increasing?

Carina Slidsborg, MD^a, Henrik Bom Olesen, MD^a, Peter Koch Jensen, MD^a, Hanne Jensen, MD, DrMedSci^b, Kamilla Rothe Nissen, MD, PhD^a, Gorm Greisen, MD^c, Steen Rasmussen, MSc^d, Hans Callø Fledelius, MD, DrMedSci^a and Morten la Cour, MD, DrMedSci^a^,b

^a Departments of Ophthalmology
^c Neonatology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
^b Department of Ophthalmology, Copenhagen University Hospital, Glostrup Hospital, Copenhagen, Denmark
^d National Board of Health, Copenhagen, Denmark

OBJECTIVE. The objective of this study was to analyze the populationincidence of retinopathy of prematurity treatment in Denmarkin the 10-year period from 1996 to 2005.

METHODS. Patient charts of infants treated for retinopathy ofprematurity and the national birth registry provide informationabout neonatal parameters. These parameters, along with birthin the latter half of the period (2001–2005), were analyzedas risk factors for retinopathy of prematurity. The nationalregistry for blind and visually impaired children was accessedto obtain information about visual impairment attributable toretinopathy of prematurity in both treated and untreated infants.

RESULTS. The study population consisted of 5467 Danish preterminfants born in 1996 to 2005, with a gestational age of <32weeks, who survived for 5 postnatal weeks; 2616 were born in1996 to 2000, and 2851 were born in 2001 to 2005. The incidenceof treated retinopathy of prematurity cases increased significantlyfrom 1.3% in 1996 to 2000 to 3.5% in 2001 to 2005. Significantrisk factors for retinopathy of prematurity treatment were lowgestational age, small for gestational age, male gender, andmultiple birth. Other, yet unknown factors contributed to theincreased incidence in the latter half of the period. Of thestudy population, 0.6% were registered as visually impairedbecause of retinopathy of prematurity within 2 years after birth(early-detected visual impairment). The incidences were notsignificantly different between 1996 to 2000 and 2001 to 2005.Of all of the early-detected, visually impaired children, 16%had not been treated for retinopathy of prematurity and wereconsidered screening failures.

CONCLUSIONS. The incidence of retinopathy of prematurity treatmentin Denmark has more than doubled during the past half-decade.This increase could not be fully explained by increased survivalrates for the infants or by changes in the investigated neonatalrisk factors.

The above article can be found here.

Merry Christmas To Me!

2007-12-23T23:19:00.000-05:00

I was given a gift today, a gift that I have longed for since Paige was in the NICU for her first Christmas

Hovering over her incubator my thoughts ran a mile a minute. My baby wasn't supposed be born yet. Why did she have to be stuck in a plastic box instead of being home waiting for Santa? People were decorating their trees, shopping, wrapping presents and making cookies. We couldn't bring ourselves to enjoy any part of the holiday. I can't wait to bake cookies with you sweetie.

Over the past 9 years I have tried, quite a few times, to bake cookies with Paige. Something always happens (attitude problems, feet hurt, hands hurt, etc) that prevents us from finishing the cookies without a huge argument or meltdown (mommy meltdowns too).

I gave up a few years ago. It wasn't worth my sanity or jepordising my, already strained, relationship with her.

A few days ago hubby and I were at the grocery store (while Paige was visiting Grandma) when we decided it may be time to try to make cookies with Paige. I was willing to give it a go and grabbed a package of mix. Using a mix would cut down on the prep time, thus lessoning the likelihood that the project would end early.

Hubby had a different plan. He wanted to make them from scratch. Not just one kind either... chocolate chip AND sugar cookies to decorate. Icing and all. And by "he", he meant Paige and I making them.

This morning her and I got all set up.

We started to combine all of the ingredients and then we headed to the counter to use the beaters. She wasn't happy about having to use them and had me turn them on while she covered her ears. In the past, that very step may have ended our project.

Not this year.

Look at her go!! Woo Hoo!!

Not only did we make cookies, but we had FUN!

Paige and I made the sugar cookies...

Daddy and Paige made the chocolate chip cookies, complete with egg juggling too!

Just as Paige and I were getting ready to cut out our 2nd round of sugar cookies, she lost interest.

Playing in the flour was much more fun than cutting out 20 more holiday shapes. In the past I would have been upset. Today, I focused on watching her enjoy the flour and remembering how much fun we had making cookies. Thank you sweetie for making cookies with mommy.

Tonight, after putting tornado Tyler to bed, Paige, Daddy and I curled up in our bed to watch our annual Christmas movie... A Christmas Story. Part way through the movie Paige got off the bed and told us that she would be right back. 15 minutes later she came in with a cookie. A decorated cookie! My little angel got out all of the decorating tubes, icings and plain cookies to decorate a cookie for me. The tears. Oh boy were there ever tears!

9 years ago I watched my tiny girl spend her first Christmas hooked up to tubes and wires, waiting for the day that we could enjoy Christmas traditions. Today I spent the day staring at my big girl, watching her smile and listening to her beg to lick the beaters.

My heart is full today.

A Request From Helen

2007-12-18T20:51:00.000-05:00

Dear Readers,

I know this isn't a good time of year to ask anyone to do anything, but I'm up against a deadline myself. I've contracted with a medical journal for an article on improving informed consent among parents whose children are born in the ethical gray area below 26 weeks gestation. It needs to be in Jan 1, and I still haven't done any Christmas cards! Nevertheless...

I would be interested in suggestions any of you have about ways to improve the informed consent process especially prior to delivery.

My own thoughts are that we need to:

1) start in the media (no more unchallenged "miracle baby" stories)

2) extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages

3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)

4) require handouts from OBs/ child birth instructors giving comprehensive information and options for each gestational age along the lines of "If your baby is born at X weeks, here is what s/he will be like, here are the risks and probable outcomes... here are your options..."

5) allow prenatal advance directives that give each couple a chance to discuss and think about the issues at home, on their own (away from the pressures of high-tech medicine)

6) promote a frank admission by the medical community about the "experimental," highly painful, and damaging nature of treatment of babies below 26 weeks

7) promote a frank discussion of the economic, marital, and health consequences for the family following the survival of an extremely preterm child

8) promote a frank admission about the resuscitation and treatment policies of each hospital -- a sort of "truth in advertising" --that would let parents "vote with their feet" and choose a hospital whose policies are more in line with their wishes

9) perhaps offer a physically separate facility for delivery and palliative care for parents who do not wish resuscitation so that families don't have to confront NICU technology and the attitudes and imperatives for its use that accompany it

And in the NICU:

We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)

In society at large:

1) let's have universal health care (stop the financial incentives of hospitals to mandate care that pushes the margins of viability despite parental wishes); and while we're waiting, perhaps insurance companies have a role to play (Blue Shield, for example, has drawn up a fairly good information sheet on <26 weekers)

2) and life-long follow-up for all NICU grads

3) as well as realistic funding for the needs of families of children who survive the NICU with handicaps

If "society" wants to require everything be done for every baby all the time, they need to help pay for the consequences. So far, "society" has been incredibly unwilling to do so.

I'd like to hear what you think.

Thanks in advance for any help you can give.

Helen Harrison

Where is Tyler?

2007-12-15T07:22:00.000-05:00

Last week was strange.

It was calm.

My father in law and his wife were headed our way, bringing our niece, to celebrate an early Christmas. I had worked fairly hard getting the house ready and was actually ahead of the game (normally I really race to finish at the last minute). I just had a few last minute (but very time consuming) things to do.

Too calm.

It's Thursday afternoon and I'm on the couch, with my laptop, doing some much needed research. (does playing scrabble on Facebook count as research?). I was trying to get it all done before I had to leave to pick up Paige from school. Tyler was playing his usual game of "can I hit the keys before mom can block my hand". About 2 minutes into my game I realized that Tyler had stopped playing his "laptop game".

Where is Tyler?

We have an open floor plan in our house. I can see the entire first floor from where I am sitting. Well, almost all of it.

Where is Tyler?

I put the laptop down, fully expecting Tyler to come charging in to beat me to the keys.

Where is Tyler?

I head off to the only spot that one sneaky toddler could be hiding, behind our love seat (which is not against a wall).

There he was, big yellow Nerf football in hand. Big yellow Nerf football with a huge chunk missing. I did a quick check of the floor. Only crumbs. I grab Tyler and fish the chunk out of his mouth.

Off to go get Paige.

After we are back at home I place the piece back on the football to show Paige. Wait. There is more missing. Nowhere to be found. Since it was only a small piece (smaller than a pencil eraser), I didn't worry. I call hubby and we both proceed to surf the internet to find something to reassure us that his Nerf snack is non toxic.

After an hour of on and off of unsuccessful searching I shoot off an instant message to some of my fellow bloggers and doc bloggers and go back to cleaning for our visitors. When I hear back from a trusted source that I shouldn't be taking this snack fiasco so lightly, I call the doc who tells me to go straight to the ER at the children's hospital. His concern was that the piece could cause a blockage. He said to get an xray and then we could be on our way.

Sound simple?

I thought so too.
We arrived at the hospital (with football) a little after 6pm.

2 hours in the waiting room filled with sick kids. (We sure were happy that we didn't have Paige with us-thank you Grandma).

1 hour back in a room waiting to be seen.

(Doctor finally comes in and proceeds to tell us that Tyler needs xrays on his lungs-not his intestines-because of the risk of aspiration. I tell the doc that Tyler never coughed or choked. I question the xrays because he is satting at 100% and has good bilateral breath sounds. I said that I wanted to leave since the doc agreed with me that the piece was too small to cause a blockage. I finally give in since I realized that I was being doc mom and forgetting that I am really not a doctor. lol)

1 hour waiting to get the results from the xray

(Keep in mind that Tyler has not had dinner. I didn't feed him before we left in case there was a blockage. The hospital told us not to feed him either in case he needed surgery.)

1 more hour to wait for our turn for additional xrays that the doc originally ordered but were not done because the radiologist did not feel we needed them.

1 more hour of waiting for the results of the 2nd set of xrays.

5 minutes listening to the doctor tell us that Tyler was fine.

We spent 6 hours in the ER!!

Thankfully the hospital has a McDonald's on site that is open 24 hours. We all ate and then headed out for our 45 minute trip home, which took well over an hour because of ice.

I got about 3 hours of sleep and then was up getting my house ready for the visitors that would be arriving that day.

I wish I could have trusted my mommy instinct which was telling me to not go to the ER. The piece was so small and if it was going to cause a blockage, there was nothing we could do about it until it happened.

Lesson learned.

Settling In

2007-12-11T12:42:00.000-05:00

It goes without saying that our lives changed when Paige was born (at 25.5 weeks for those of you who are new). Hospitals, doc visits, meds, medical terms to learn, etc. The only thing that was consistent in our lives what the inconsistency.

When Paige was 4 I joined an on line group for parents of older preemies. At the time I needed help with the public school system and the parents on the list were full of very helpful advice. One feeling that I took away from the "been there, done that" crew was a sense that they had settled into their lives. They had gotten to know the doctors well, were used to IEP's and had accepted (but not given up on) the alphabet soup (ROP, MR, DSI, SD, BPD, CP, etc) that their child was dealt. I remember being so envious at how calm many of them were and couldn't wait to get there myself.

9 years has passed since Paige was born and I still don't feel calm. Inconsistency still rules our world. Just when we think we are on the path to consistency, more letters are added to the already full bowl of alphabet soup.

I'm still waiting for the day when we can all settle in.