Looooong Overdue Update

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

(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?

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

**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

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

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

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

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

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?

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

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 _2max test. 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....

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

****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

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

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:...

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 inflammation but increases impairment. We hypothesized that increased dose is associated with increased neurodevelopmental impairment, lower postmenstrual age at exposure increases impairment, and risk of bronchopulmonary dysplasia modifies the effect of postnatal corticosteroid.

METHODS. Steroid dose and timing of exposure beyond 7 days was assessed among 2358 extremely low birth weight infants nested in a prospective trial, with 1667 (84%) survivors examined at 18 to 22 months' postmenstrual age. Logistic regression tested the relationship between impairment (Bayley Mental Developmental Index/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 first dose. Separate logistic regression tested effect modification according to bronchopulmonary dysplasia severity (Romagnoli risk > 0.5 as high risk, n = 2336 (99%) for days of life 4–7).

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

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

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

Tears of Sadness-Tears of Joy

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"

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

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...

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 inflammation but increases impairment. We hypothesized that increased dose is associated with increased neurodevelopmental impairment, lower postmenstrual age at exposure increases impairment, and risk of bronchopulmonary dysplasia modifies the effect of postnatal corticosteroid.


CONCLUSIONS. Higher steroid dose was associated with increased neurodevelopmental impairment. There is no "safe" window for steroid use in extremely low birth weight infants. Neonates with low bronchopulmonary dysplasia risk should not be exposed. A randomized trial of steroid use in infants at highest risk is 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 for steroid use in extremely low birth weight infants."

Too Much Praise-Revisited

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

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

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

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.