Is ROP on the rise?-A Denmark Study

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 population incidence of retinopathy of prematurity treatment in Denmark in the 10-year period from 1996 to 2005.

METHODS. Patient charts of infants treated for retinopathy of prematurity and the national birth registry provide information about neonatal parameters. These parameters, along with birth in the latter half of the period (2001–2005), were analyzed as risk factors for retinopathy of prematurity. The national registry for blind and visually impaired children was accessed to obtain information about visual impairment attributable to retinopathy of prematurity in both treated and untreated infants.

RESULTS. The study population consisted of 5467 Danish preterm infants born in 1996 to 2005, with a gestational age of <32 weeks, who survived for 5 postnatal weeks; 2616 were born in 1996 to 2000, and 2851 were born in 2001 to 2005. The incidence of treated retinopathy of prematurity cases increased significantly from 1.3% in 1996 to 2000 to 3.5% in 2001 to 2005. Significant risk factors for retinopathy of prematurity treatment were low gestational age, small for gestational age, male gender, and multiple birth. Other, yet unknown factors contributed to the increased incidence in the latter half of the period. Of the study population, 0.6% were registered as visually impaired because of retinopathy of prematurity within 2 years after birth (early-detected visual impairment). The incidences were not significantly 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 were considered screening failures.

CONCLUSIONS. The incidence of retinopathy of prematurity treatment in Denmark has more than doubled during the past half-decade. This increase could not be fully explained by increased survival rates for the infants or by changes in the investigated neonatal risk factors.

The above article can be found here.

Merry Christmas To Me!

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

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?

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

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.

Alternative Therapies

I would like to start a new series of topics that explores the alternative therapies that we use on our preemies. There is so much information on the internet about various ways of helping our little ones and, to be honest, *I* believe that most all of it is false. I will admit that we have shelled out tons of money in pursuit of "fixing" the long term issues related to prematurity. We are now in the same place as we started.

My goal in the upcoming discussions is to talk (openly and honestly) about each alternative therapy, individually. This way, those parents who are seeking information can read comments from parents who have "been there, done that". And, even if you have not tried the alternative therapy but know of research, please speak up.

It's going to take me a bit of time to get this started. What I'm asking of you all today is if you can EMAIL me, or post in the comments section, what alternative therapies you would like to see discussed.

Nonverbal Learning Disorder

A few weeks ago (may have even been a few months-I'm waaaaay behind) Teri brought to my attention that older preemies seem to be struggling with Nonverbal Learning Disorder (NLD) and maybe it would be a good blog post. I have heard this term for at least 5 years due to being on an on line support group for school aged preemies. I have heard it mentioned here too, by both adult preemies and parents of older preemies. I have even looked it up, on numerous occasions, while helping other parents.

So, can someone please tell me why I never realized that this is exactly what is going on with Paige? I feel like an idiot. I started researching NLD for this blog post and found myself staring at the screen, dumbfounded that I am just now figuring it out.

According to all of the reading I've done over the past 3 days (and believe me, I have not stopped reading) the characteristics of a NLD child are as such...

* Above average reading skills. They are often early readers.
* Above average language skills. They talk like mini adults.
* Above average rote memory.

* Socially they struggle because they are not able to understand non verbal communication.
* NLD kids have difficulty in math and reasoning skills.
* Difficulty with visual and spacial functioning.
* Poor handwriting skills.
* Problems with balance and coordination.

Paige fits these characteristics perfectly. Some of the websites out there listed examples and I swear they were writing about Paige. One example that was given (I cannot recall which website-brain overload here!) was that NLD kids are literal children. OMG!! We have called Paige "literal girl" (goes to the tune of Madonna's "material girl") for years!

The best source for information, that I have found is

http://www.nldontheweb.org/ Please speak up if you have a better source as I am scrambling to find as much info as possible.

This discovery is just one more example of how it is imperative that preemies are studied past the age of 2!

A big thank you to Teri for the post suggestion and reminding me of a study that Helen had mentioned...

http://archpedi.ama-assn.org/cgi/content/full/156/6/615

Now I'm back to that place that is so familiar..... where do I go from here?

Too Many Ultrasounds?

The following article was taken from www.sciencenews.org and can be found at the following link. http://www.sciencenews.org/articles/20060812/fob1.asp

I had seen a similar article a few years ago but it was not as detailed as this one, which comes to us today thanks to Helen Harrison.

During my pregnancy with Paige, and before my water broke, I had many ultrasounds due to early bleeding, hyperemesis and polyhydramnios. After my water broke, I had daily ultrasounds, lasting more than 15 minutes each sitting, to check my fluid levels. This was a daily ritual that continued the entire 2 1/2 weeks until I delivered. What I find most interesting about this article is that Paige was both very delayed in speech and is left handed, despite her left sided weakness. I'd love to see if the researches have proven a correlation.

When I was pregnant with Tyler I had weekly ultrasounds, all of them lasting more than 15 each sitting. Towards the end I had biweekly ultrasounds that lasted at least 30 minutes each sitting (some were less if Tyler cooperated). Although he is too young (almost 19 months) to determine hand preference, he is very delayed in speech (not even saying mama and dada consistently).

If anyone has any newer information on the subject, I'd love to see it.

Bad Vibrations? Ultrasound disturbs mouse brains.

Christen Brownlee

Prolonged and frequent use of fetal ultrasound might lead to abnormal brain development, a study in mice suggests. The finding sounds a cautionary note for pregnant women getting the commonplace procedure.

In that technique, an ultrasound probe sends high-frequency sound waves into the abdomen of a pregnant woman. The waves bounce back to detectors, creating images of the fetus. Doctors use the pictures to check for birth defects and to assess a fetus' size and movements. Many women also undergo ultrasounds to create collections of early baby pictures.

Ultrasound has generally been regarded as safe. However, a few studies have suggested that it might cause neurological changes, such as delayed speech or an increase in left-handedness. Researchers hadn't studied how the number or duration of ultrasound procedures affects neurons growing in the fetal brain, says neuroscientist Pasko Rakic of Yale University.

Neurons are created in discrete places within the brain as it develops, and they then travel to the brain's outer layers. Rakic and his colleagues study this process, which is known as neural migration.

To determine whether ultrasound affects neural migration, the team worked with mice at a late point in pregnancy, when new fetal neurons have to migrate a long distance to reach the brain's outer layers.

The researchers injected the animals with a chemical that marks newborn neurons and then applied ultrasound to the bellies of some of the animals over the next 3 days. The ultrasound was administered to each pregnant mouse in multiple sessions that totaled 5 to 420 minutes. With the machine turned off, the scientists touched other mice with the ultrasound probe for the same amounts of time. A third group of animals received no procedure at all.

After the mouse pups were born, the team examined brain slices. In animals whose mothers had had ultrasound sessions that added up to 30 minutes or more, the scientists found that a significant number of neurons destined for the brain's outer layers of gray matter had become improperly embedded in inner layers of white matter.

The number of misplaced neurons increased with the total time that a newborn mouse's mother had spent receiving ultrasound. In contrast, the brains of newborns whose mothers had had the sham procedure typically resembled those whose mothers had had no procedure, Rakic's team reports in an upcoming Proceedings of the National Academy of Sciences.

"When cells are in the wrong place, they might affect function of the cerebral cortex," which in people controls such higher brain functions as language and movement, says Rakic. "We just don't know yet what this could do."

He and his team plan to conduct studies that will determine whether the results hold up in nonhuman primates.

Rakic cautions that some women might be getting excessive sonography. He's especially concerned about so-called keepsake ultrasounds, which are often performed by untrained technicians in nonclinical settings, such as shopping malls.

The mouse results reinforce guidelines set by the Food and Drug Administration, says pediatric neurologist Verne Caviness of Massachusetts General Hospital in Boston. "The basic guidelines in this country suggest using ultrasound as little as possible," he says. "Baby pictures aren't a justifiable use for this technology."

How Much Should You Tell Your Preemie?

Buddhist Mama wrote: "Speaking of which, can we have a post on this topic TPE? When do many of you out there tell your children about their prematurity? Particularly if they would have no other way of knowing---ie. by the time you tell them they no longer have tubes/oxygen monitors/etc. Yet, many, may have sensory issues that they might understand and appreciate better with the knowledge of their prematurity. TPE often mentions this when she talks about Paige being her own advocate and empowered by knowledge.While I am fully a 'knowledge is power' advocate, at this point, I can also see the other side. I have not spent a lot of time talking to my 3.5 year old twins about their prematurity because I don't want to pathologize them or make them feel bad about themselves."

I want to start the discussion with this statement...

Talking (or not talking) to your preemie about their premature birth is a personal decision. It is one that is made based on individual circumstances. I'd like to ask everyone to share their experience but please do not criticize others for their decisions.

I've covered this topic before. You can read the post here.

We have never sat Paige down and told her the entire story of her premature birth. Why? Because she has always known what happened. From the first doctors visit on, we have never sent her out of the office when we've given her history to the nurse/PA/med student/doctor, etc. She is present from the beginning to the end of the visit. She is an active participant in her care. She is not the one with sole control, but she does have a say in the decisions of her care. We feel that it is her life, her body and in turn it is her that has to endure the tests and treatment. And, for the past few years, it has been Paige that answers all of the doctors questions. If she isn't sure of an answer then she looks at me and either I answer or I give her a hint to spark her memory.

One thing I should mention... When Paige was young and it was time to give history, if I was feeling over emotional about her birth that day (it happened many times in the beginning) then hubby gave history (and I did it for him some days). I never wanted Paige to feel that emotion. Her birth, and subsequent NICU time, was hard for us but she doesn't need to see how much heartache it caused us all. As she got older she started asking questions about how we felt during that time. That was when I talked to her about the emotional side of it all, but never during an appointment.

We also never lie to her or try to soften the blow. If she is going to have a test and it may hurt, we tell her. We explain the test, forward and backwards, and tell her how long the painful parts may last. Even something as simple as an upper GI. When she was 4, and refusing to swallow the barium, the nurse said, "it tastes like a vanilla shake." . Paige was upset because hers did not taste like a vanilla shake. After I told her, "Paige it tastes like eating yucky chalk but you have to do it so the xray machine can see inside of your tummy." she drank it right up. Truth... that's all she's asking for.

If we are at an appointment that was just supposed to be a simple exam and the doctor decides to do a test where something may hurt, we let her decide (if possible) if she wants it that day or come back the next day. We never tell her that she can decide to NOT have the test, but she does have some control. After all, it is her body.

When she was 5, and very sick, we had to see doctor that was not her regular pediatrician. He had her lie down and told her that he just wanted to look in her nose. From behind his back he pulled out a swab and stuck it into her nose and into her sinus cavity (to check for flu). To say she freaked out would be an understatement. If she hadn't been so sick I am sure she would have sat up swinging. She was angry with me because I hadn't told her that it was coming. Even after I told her that I didn't know it was coming either, she chose not to speak to me for the entire day. She was devastated and I couldn't blame her. If a doctor had done that to me, I would have been upset too.

From that day on, Paige starts every doctors appointment with the following statement... "Please tell me what you are going to do to me, before you do it." And after seeing another doctor who jammed the back of her throat with the tongue depressor, she has now added, "I can open very wide so you don't need the stick." to her opening statement.

Before anyone judges us on how we've raised Paige, you should know that we came to this decision by hearing from adult preemies and how they felt.

Paige can talk to any adult or medical professional but as far as Paige talking to her peers about her early birth, that is a different story. She never used to have a problem with it. If you read my original post on the subject, it started out with me observing her talking to her classmates. She was fine with the discussion. That was during the last school year though and something seems to have changed. I think a boy in her class made fun of her and now she keeps it to herself. It's not that she is embarrassed about her early birth, but instead it seems as if she is learning where and when it may be appropriate to tell her story. She seems ok with that and so are we.

So, that's our story. And, as I said in the beginning, it was a personal decision to always include Paige when giving her history. It was one that we made based on hearing from adult preemies who had very different experiences. I hope everyone will share their feelings on this subject, including the adult preemies. After all, it is their voice that can give us a glimpse into the future.

Resilience and Perseverance

A few months ago Chris (Chris and Vic) had sent me an article about resilience, thinking it would make a great post. Although I agreed with her, I was dealing with Paige's mental health issues at the time and was drained and feeling a bit jaded. As I sat down to write the post, I honestly couldn't clear my head and come up with an example on resilience in our lives.

About that same time, Doc Rob took on Chris's question and posted a response that was incredible.

http://distractible.org/2007/08/26/ask-dr-rob-resilience/

Both Chris's question and Doc Rob's post left me feeling a bit angry at myself that I couldn't see this in my child. She has gone through so much in her 9 years yet I couldn't see through her severe OCD and statements of thoughts of suicide.

That all changed this week.

During a trip to the mall, Paige asked if she could try the rock climbing wall in the sporting goods store. We stood below it, looking up at the giant. It was Mount Everest and it was calling her. I agreed to let her try it and off she went.

Right after I took this picture Paige started slipping. She called down to the teen aged boy holding her rope, "Ok, I'm ready to come down."

I was so proud of her. She had made it almost 2 stories. I knew her hands must have been hurting.

"Nope. You're not done. Keep going." the boy yelled back.

I'm now screaming on the inside, "She has mild CP. She's got to be hurting. Listen kid, do you know how hard it was for her to yell down to you. Now let her down!" But, I kept my thoughts to myself and just watched her.

She went up a bit further and, just as I snapped this picture, she slipped.

I yelled up to her, "Paige, you can come down now if you'd like." Paige said nothing but the look she shot me said it all. I could hear her thoughts, from 2 stories up. You're embarrassing me Mom!"

When she first slipped she looked shocked, but only for a very quick moment. Then she started to swim. Yep, swim. In mid air. I was sure you could hear her giggles all through the store. She swam back to the wall and proceeded to continue climbing Mount Everest.

I started to cry. It wasn't one of the movie quality cries either. I was sobbing. Ugly sobbing. It was at that very moment that I thought of Chris and Doc Rob. My precious baby girl is resilient and I was too blind to see it. I was living in the moment, dealing with only what was in front of my face. I failed to look back and see how far she had come. Not how far we all had come, but how far SHE had come. She has grown so much on her own, by her own perseverance and I missed it. Until now.

She slipped, swam and giggled a few more times.

And finally reached the top of the giant mountain.

Paige went on a forward journey that day. A 47 foot journey of perseverance. (and some slipping, swimming and giggling too).

Her journey led me to look back at how far she had come. I can now see the meaning of resilience and perseverance, by simply looking at her beautiful blue eyes.

Reporting The Story by Ruth Levy Guyer

I was first introduced to Ruth Levy Guyer's work when I read her book, Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society.

http://www.amazon.com/Baby-Risk-Uncertain-Legacies-Miracles/dp/1933102268/sr=8-1/qid=1170879288/ref=sr_1_1/104-6340677-2245540?ie=UTF8&s=books

You can read my blog post about the book here.

She is also a regular on NPR's "All Things Considered".

Her recently published piece for www.scienceprogress.org is a must read. Her words echo what most of us have discussed here with regards to accurate reporting.

A big thank you to Helen Harrison for sending the link to the group.

Justification

Whenever I write about Paige, her life and her current issues, I get comments and private emails asking me why I am so negative.

I read other blogs and notice that whenever a parent writes about their child's current issues (or their potential issues) they feel the need to also add statements like, "but I love him/her anyway" or "it doesn't change the way I feel about my child.".

Who are you trying to convince? Yourself? Family? Strangers?

Are you trying to justify a decision?

Why don't I add these statements to my blog?

I do not need to justify my love for my children.

9 Years

Happy Birthday to our sweet Paige!

We loved you from the moment you were conceived.

The first time I held you, I thought my heart would leap from my chest.

Until you were born I honestly never knew emotion existed that was this strong. So strong that there are no words to describe the feeling.

You were born fighting.

As you got older, your personality quickly emerged.

You are a silly girl,

who loves the camera.

You never colored on the walls.

Your body was your canvas!

You sure do love animals

And they love you too!

You are a girly girl, through and through!

But you can be a tough chick too!

In your short 9 years you have been through a lot.

But your spirit always shines through.

You are a fantastic big sis!

You are such a courageous young lady.

You have captured the world with your eyes.

Oh your eyes, your beautiful eyes.

We love you so much Miss Paige.

We are honored to be a part of your journey.

Happy Birthday Miss Paige!

So Many Good Points

So often, there are many wonderful, thought provoking points that are made in the comments section on my blog. My fear is that they get missed.

I would like to bring forward some of the ones that were left on the post titled, "Dear Dr. Anwar".

These are not in any order. And, please know that I honestly felt there were many good points, not just the ones listed below. (Hopefully you can read them. Blogger seems to want to squish my words together, despite me telling it not to.)

I am starting with Chris's comment because I feel that she sums up my feelings and, as always, it is beautifully written.

Chris wrote:
"When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance." and "And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift."

I have seen a change in the comments section of this past post, compared to others. Many people were stating their points and then, after reading others comments, making a great effort to understand where the other person was coming from. Seriously folks, call me hormonal, but it was beautiful. I thank you for it too.

23wktwins'mommy wrote:
"I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure."

Tammy wrote:

"I did feel guilty during the NICU for wanting him to live despite any future statistical outcome. I now know that there are no guarantees when it comes to the future. I don’t think doctors can list all possible outcomes but I think they should give you the facts. I wish premature births, especially micro-preemies cases were followed better. I definitely wish doctors (other specialists) beyond the NICU were more knowledgeable about prematurity. The public needs to know more."

I too felt guilty when Paige was in the NICU. It was our decision that put her there. But, over the years I have learned to let that guilt go. That's my wish for new preemie parents who are 2nd guessing their decision... let it go.

Terri w/2 wrote:
"I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one."

Anonymous (11/5 at 8:31) wrote:
"I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated."

Buddhistmama wrote:

"In the end, we each make our decision and make our peace with that decision. But we should stop judging the decisions made by others especially if they differ with the ones we might have made."

and

"It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices. One can read Orwell's 1984 and see what that kind of world looks like."

Kim's last statement echos my feelings. Why are we so threatened when someone makes a different choice than ours?

And finally...

Helen Harrison wrote:
"We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences. "

Yes! Yes! Yes! We are never going to be a society in which we can make decisions based on informed consent if we are never informed!

Doctors Unmedicated

If you have not done so already, head on over to Doc Rob's blog and have a listen to the first (and hopefully not last) podcast, cleverly called Doctors Unmedicated.

There you will meet Doctor Rob, who blogs under Musings Of A Distractible Mind, and Doctor Clay, formerly known as Dr. Clark Bartram of Unintelligent Design. (Brownie points to the first person who can identify Dr. Clay's 2 other blogs)

I have long loved the interaction between the 2 of them and it really shows in their podcast. A lot of fun and a great discussion on the current decision of the FDA to pull cold meds used for children.

Enjoy!!

Dear Dr. Anwar,

October 27, 2007 marked 9 years since the day we met. For my husband and I, it was the scariest day of our life. I was admitted to the hospital, 23 weeks pregnant, with premature rupture of membranes. We were told that, statistically, our baby would be born within 24 hours.



I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.



Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.



Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.



2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.



My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.



But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.



Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.



After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.



It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.



Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.



When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.



I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.



Respectfully,



Stacy

Ribbon for *Prevention* of Prematurity

I received the following email.... Anyone have any ideas?

"Hi Stacy;

I'm wondering about something - perhaps you would know. . is there a "ribbon" to commemorate prevention of prematurity specifically? I know that the MOD has used pink/blue ribbons for prematurity "awareness". .however, I see from doing some searching that this also commemorates infant loss and a few other things, not specific to prematurity. Would you be interested in launching a "prevent prematurity" ribbon through your sight by asking your list members for suggestions? My thought was "mother of pearl". "

Does anyone know if there is a ribbon specifically to draw awareness to the *prevention* of prematurity?

Keep It Simple

Any time I have heard/read anything from a "professional", with regards to talking to your kids about where babies come from, they always say... keep it simple.

When Paige was 5 she began asking questions. I kept it simple. I only answered questions with a direct response... no elaboration. My simple answers were never good enough for her. All it caused her to do was ask more specific questions. By the time our conversation was done, we had pretty much covered the curriculum in high school health class.

Thankfully I am not, in the least bit, shy about discussing the topic.

But, hubby is not so fortunate. He would have rather that I told her, "It's all magic."

Paige quickly caught on to this and had tons of fun chasing him around the house yelling the word "uterus".

Jump ahead almost 4 years.

Over the weekend Paige and Daddy were cuddling on the couch. I sat down to watch TV and Paige decided that it was my turn to get some cuddles. Daddy started teasing her and made a pouty face because she had left him.

"It's Mommy's turn."

"What about my turn Paige? What am I, chopped liver?"

"No Daddy but Mommy gave birth to me. You just gave the sperm."

Poor Daddy.

He magically disappeared.

Bonding with your preemie-Real World Experience

The article in my previous post has not left my mind. I could think of quite a few ways to complain about it, and all of the harm that article could do, but I've decided that it wouldn't be helpful to any new parents who are scared and need advice.

So here are the questions...

How did all of bond with your preemie?

Did it happen in the NICU or not until your baby was home?

Did your preemie seem to want to bond with you?

Do you have any suggestions on what actually did work to help you feel close to your preemie?

Parenting Magazine-Bonding With Your Preemie

In the current issue of Parenting Magazine you will find an article "Bonding With Your Preemie". I wasn't sure about copyright laws so I am only going to paste a link to the story.

http://www.parenting.com/parenting/article/0,19840,1666646,00.html

Personally, I wonder if the author has even ever stepped one foot into a NICU. If she has, and her suggestions worked for her, clearly she must have had a late term preemie. Not one of those suggestions would have been even remotely possible until Paige was almost ready to go home.

One of the suggestions by the author is to stroke your baby for 15 minutes, 3 x per day. She states that this suggestion is based on a recent study. I have just spent quite a bit of time looking for any study citing this suggestion, but have not been successful. If anyone has found it, please post it. Touching Paige for 15 minutes, while she was still in the NICU, was clearly painful for her. Actually we were told NOT to touch her with stroke like movements. I quickly learned why this was a good suggestion when I forgot the rule and decided to pet her head. I felt horrible and never did it again until she was much older.

Since November is National Prematurity Month, I would have expected much better reporting from a magazine geared towards parents of children!

Please Help Michelle

Every week I receive emails asking for help with a particular issue. Some ask for links, some ask for hope, and some ask for help.

I am going to start a reoccurring post in which I feature one of the emails (always with permission of the author). I ask that all of you who may have an idea, thought, link, positive story, etc leave a comment for the featured parent.

I will only allow positive feedback. Many of you know that I do not shy away from controversial topics and comments. But, when it comes to helping a family that is in need of direction, harsh wording will not help and will not be allowed.

Today, please help Michelle. Her emails to me (with her permission) are in bold. Although this post will be long, I chose not to edit them in fear of omitting an important piece of info.

"Stacy, I am emailing you asking for some guidance. I didn't want to hijack your comments section on an unrelated post. I am trying to find information on Vestibular Sensory Disorder written in lay-person's terms. Until I can absorb some information in regular-speak, I am often unable to comprehend and fathom what in the world the doctors and researchers are talking about. I need, at least, a point of reference, to jump off from.

We are unsure, at this time, if this is an issue, along with something else, that afflicts our preemie. But something is going on, more than just the normal, spoiled 3.

Some days I feel like throwing in the towel. Like today at the surgery center, when none of the other adults in his life were able to go with me. I was just waiting for the staff to call DFACS. I know all the other parents were judging my inability to control my child. He was freaking out about the environment, the hospital bracelet, the BP cuff, which is like flashbacks to NICU, the gown, etc.

Oh, God. The more I write it down, it doesn't really sound like Vestibular the way I understand. I thought Vestibular was affected by your ears and eyes. Oh hell. We may have bigger issues that I realized.

Maybe you or Helen have some resources readily available for one, now, panicking Mom, before I call the Neuro I can't stand and the Ped who abandoned us?"

This is another email from Michelle, giving a little background on her son.


Stacy,
Perhaps I should give you some background on my son, since, though I have been reading you for about 18 mos, I have only commented a handful of times.

My son was ripped from my body at 25 weeks weighing 26 oz. Spent 6 weeks on various ventilators from the high-speed oscillator to the nasal cannula. Had PDA ligation at 11 days old, blah, blah, blah.

My mother (and now, my sister) are both NICU nurses. Despite growing up with a mother who brought home stories, and often having visited her NICU as a young adult, (Prior to HIPPA. Also, these babies often had no one who cared what happened to them. No home to be discharged to, no family to hold vigil at their bedside.) I was still one of those seriously mislead individuals who believed that "whew! we dodged a brain bleed. No disabilities for us! He came home with just the standard preemie diagnosis and specialists.

The cardiologist, gastroenterologist and audiologist all released us from their care at 17 mos. We inherited an awful neurologist around the same time. We originally went to him for "seizure-like activity" that originated at his 1st birthday party. My mother, a healthcare professional for 35 years witnessed it and says they were definitely seizures. However, they were unable to reenact them under controlled conditions, and after a couple months, he ceased to have them at home. They discovered a hydrocephalus during an MRI for the seizures. Around this time (2 yrs old) he was also diagnosed with extremely mild CP.

So, all those bullets we thought dodged, were just waiting for us to become comfortable with our son's outcome.

He has been receiving OT and PT, and some ST, through the Early Intervention Program here, called Babies Can't Wait. Unfortunately, the suits are messing up the funding and that program is not going to be able to stay afloat much longer. When he turned 3, he was evicted from that program and accepted into the county school early intervention program. That is where he is now.

His gestational age is 38.5 mos, adjusted age is 35 mos. His cognitive and language skills are well above his "normal" peers. Sometimes, his speech even surpasses his sister, who just turned 5. His fine and gross motor skills are his area of challenge. He was 22 mos old before he started walking. (he was over a year old before he could lift his head up off the floor) He has just now started jumping, getting both feet off the floor and we are working on pedaling a trike. He can spear with a fork, but a spoon is a challenge, also a regular cup. He cannot dress or undress, or unscrew a cap.

Then we have his sensitivity or lack thereof. He has always liked touching skin, usually my stomach or chest, but his will do, or really any skin. I just always thought that was a hold-over of Kangaroo Care in NICU. He has a huge tolerance for pain. He was covered in fire ants a couple weeks ago and did not cry once. He just said " help me please Mommy". Yet he cannot stand to have his shirt off, or his shoes on inside. In the car, the shoes HAVE to be on!

I was a preschool teacher in a previous life and have a college degree, but I honestly cannot distinguish what is normal stubborn 3 yr old behavior and what is a possible "syndrome"

Ok everyone, now it's your chance to help. Please leave a note to Michelle in the comments section.

The Monster

OCD.

It's a monster.

3 letters.

It controls Paige's life. Every aspect. Every move she makes. Every move we make.

I've waited to post this because we were trying so hard to focus on the good news at school. But, OCD doesn't care about the good news. That freakin monster never sleeps.

Her arms and legs have sores all over them. She picks the scabs because OCD tells her to. Her clothes have blood stained spots on them. Her sheets too.

Last week OCD told her to get killed. Hubby and I were walking in the parking lot, talking to her and then she was gone. We turned around to find her in the middle of the lot. We yelled to her to come back to us. She cried and explained that her OCD thoughts told her "to run into the parking lot and get killed."

She tries to fight this monster. She really does. But, according to her, the harder she fights, the stronger and louder the OCD thoughts get. She tries to give in to it, just a little, to make the thoughts go away.

She came home Friday, after spending a few days with her grandparents. She had a lot of fun. They treat her really good and she loves being there.

After a few moments of being home she started to cry. She climbed up on my lap and was shaking, her arms spotted with bloody scabs.

She begged me to help her stop.

She begged me to find a different medicine.

She begged me to stop the thoughts.

She fought so hard to control the picking while she was at her grandparents house. Now that she was home the floodgates were opened. Normally we tell her not to pick but to fight the monster instead. We encourage her and tell her that her brain is in control and she can beat the OCD monster. But, that day she was losing. By telling her to fight it, it caused the monster to get stronger. So, we told her to go ahead and pick. She was so relieved. The look on her face was one that we hadn't seen in so long. Even though the monster was winning and she had open boo boos, she was relieved to not have to fight.

We took her out to her favorite place to eat and then kept her busy by going to a few stores and being silly in the car on the way home. It was nice to hear her laugh so much.

But, when we got home she sat by me and begged again.

"Help me Mom."

I'm really trying Paige.

"You're Talking About My Life!"

This has been said to me a few times since I've started this blog, but the emotion attached to it has been very different.

I have received many emails from parents who are happy when they find my blog. They cannot believe they are not alone. My experiences and those expressed in the comments echo their life. They are grateful for my words.

Then there are the few emails that I have received from parents who think I am actually talking about them. They are angry because they think I've used their experiences and claimed them as my own.

For the record, all of the posts in this blog are written by me and are about my life (unless specifically stated). If you think you recognize an aspect of my life, in your own, it is because there a lot of very common long term effects of prematurity.

On a side note... if you send me a private email, I will NEVER use the information in my blog unless I ask you first. Never. I hold private emails in very high regard and appreciate each and every one that I receive.

I Never Saw It Coming

Over and over we deal with new issues with Paige (former 25.5 weeker-now almost 9). It's never ending. A test for this, a medicine for that. A new diagnosis here, a suspicion there.


I'm always on guard. Ready and waiting for the Mack truck to hit us again. I pick up the pieces, adjust our lives and attempt to move on.


But one day last week, when our son (born at 35.4 weeks-now 17 months old) started excessively clearing his throat, I chalked it up to a new skill he learned and obviously figured out that it drove me nuts. And when, that same night, he was red and wheezy, I chalked it up to all of the running around he did at his sister's school.


But, when he woke up the next morning, hives everywhere, face so swollen that he could not open one eye and edema so bad that he looked like he was growing a horn out of the middle of his forehead, I froze.


After going over everything he ate the day before, I realized that he had a bite of a peanut butter and jelly sandwich. That couldn't be it, right?


A trip to the doc, 2 days of antihistamine and a visit to the allergist a week later.


Which lands us on today.


It was at the allergist office that the freakin Mack truck came out of nowhere and flattened me.


My son.


Life threatening peanut allergy.


Less than 2 minutes after his skin was pricked with the peanut and tree nut allergen he was wheezing, coughing, rubbing his nose and freaking out because he couldn't breathe good.


Blah, Blah, Blah... EpiPen at all times... Blah, Blah, Blah Life threatening reaction.... Blah, Blah, Blah... Watch that Paige doesn't give him anything to eat.... Blah, Blah, Blah... A bunch of other words flowed from his mouth.


To the driver of the Mack truck... could you please find it in your heart to blow your horn so I have a little warning before you hit me again?

This was taken less than 5 minutes after his skin was pricked.

Working on the Blog

I am going to take a short break from posting.

I am trying to devote my "blog time" to figuring out a way to categorize all of the great research/studies/links that people have been providing. I want to make it easy for someone to locate the link they are looking for.

I've gotten a few emails from people who remember seeing a link to a bit of research but then they can't remember which post they saw it in. And honestly, neither can I.

So, bear with me.

Check back soon.

I promise to be back.

Time to Brag

I had a conference with Paige's 3rd grade teacher on Monday. She has just finished the grade tests and he wanted to share the results.

In reading she is on a 6th grade level!

In math she is on a 4th grade level!

To be honest, the math surprised me. She struggles terribly with math facts. But, from what I understand, this tests focuses on the child understanding the concepts, which she does.

She is an amazing child to be able to focus in school despite her mental health issues, severe sensory issues and the fact that her EEG shows that she is still having continuous spikes. We are both in awe of her spirit!

Bragging feels good!

Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors

Published online August 31, 2007PEDIATRICS Vol. 120 No. 3 September 2007, pp. 584-593 (doi:10.1542/peds.2007-1041)

Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors?

Catherine Limperopoulos, PhDa,b, Haim Bassan, MDb, Kimberlee Gauvreau, ScDc, Richard L. Robertson, Jr, MDd, Nancy R. Sullivan, PhDe, Carol B. Benson, MDf, Lauren Avery, PhDg, Jane Stewart, MDh, Janet S. Soul MD, CM FRCPCb, Steven A. Ringer, MD, PhDi, Joseph J. Volpe, MDb and Adré J. duPlessis, MBChB, MPHb

OBJECTIVE. Although cerebellar hemorrhagic injury is increasingly diagnosed in infants who survive premature birth, its long-term neurodevelopmental impact is poorly defined. We sought to delineate the potential role of cerebellar hemorrhagic injury in the long-term disabilities of survivors of prematurity.

DESIGN. We compared neurodevelopmental outcome in 3 groups of premature infants (N = 86; 35 isolated cerebellar hemorrhagic injury, 35 age-matched controls, 16 cerebellar hemorrhagic injury plus supratentorial parenchymal injury). Subjects underwent formal neurologic examinations and a battery of standardized developmental, functional, and behavioral evaluations (mean age: 32.1 ± 11.1 months). Autism-screening questionnaires were completed.


RESULTS. Neurologic abnormalities were present in 66% of the isolated cerebellar hemorrhagic injury cases compared with 5% of the infants in the control group. Infants with isolated cerebellar hemorrhagic injury versus controls had significantly lower mean scores on all tested measures, including severe motor disabilities (48% vs 0%), expressive language (42% vs 0%), delayed receptive language (37% vs 0%), and cognitive deficits (40% vs 0%). Isolated cerebellar hemorrhagic injury was significantly associated with severe functional limitations in day-to-day activities. Significant differences were noted between cases of cerebellar hemorrhagic injury versus controls on autism screeners (37% vs 0%) and internalizing behavioral problems (34% vs 9%). Global developmental, functional, and social-behavioral deficits were more common and profound in preterm infants with injury to the vermis. Preterm infants with cerebellar hemorrhagic injury and supratentorial parenchymal injury were not at overall greater risk for neurodevelopmental disabilities, although neuromotor impairment was more severe.


CONCLUSIONS. Cerebellar hemorrhagic injury in preterm infants is associated with a high prevalence of long-term pervasive neurodevelopment disabilities and may play an important and underrecognized role in the cognitive, learning, and behavioral dysfunction known to affect survivors.

Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant Outcomes

Published online August 31, 2007PEDIATRICS Vol. 120 No. 3 September 2007, pp. 519-526 (doi:10.1542/peds.2006-2966)

ARTICLE
Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant OutcomesJaideep Singh, MD, MPHa,b, Jon Fanaroff, MD, JDc, Bree Andrews, MD, MPHa, Leslie Caldarelli, MDa, Joanne Lagatta, MDa, Susan Plesha-Troyke, OTa, John Lantos, MDa,b and William Meadow, MD, PhDa,b
a Department of Pediatricsb MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinoisc Department of Pediatrics, Case Western Reserve University, Cleveland, Ohio


OBJECTIVE. We assessed physician preferences and physician prognostic abilities regarding delivery room management of exceedingly low birth weight/short gestation infants.


METHODS. We surveyed US neonatologists to assess their behavior in the delivery room when confronted with infants with gestational ages of 22 to 26 weeks. We identified 102 infants in our NICU with birth weights/gestational ages of 400 g/23 weeks to 750 g/26 weeks, whose follow-up care was ensured because of their participation in ongoing clinical trials. We determined 4 proxy measures for "how the infant looked" in the delivery room (Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes) and assessed the predictive value of each marker for subsequent death or neurologic morbidity.


RESULTS. For infants with birth weights of <500>600 g and gestational ages of 25 weeks, >90% of neonatologists considered resuscitation obligatory. For infants with birth weights of 500 to 600 g and gestational ages of 23 to 24 weeks, only one third of neonatologists responded that parental preference would determine whether they resuscitated the infant in the delivery room. The majority wanted "to see what the infant looked like." For 102 infants with birth weights of 750 g, Apgar scores at 1 and 5 minutes and heart rates at 1 and 5 minutes were neither sensitive nor predictive for death before discharge, survival with a neurologic abnormality, or intact neurologic survival.


CONCLUSIONS. The "gray zone" for delivery room resuscitation seems to be between 500 and 600 g and 23 and 24 weeks. For infants born in that zone, neonatologists' reliance on accurate prediction of death or morbidity in the delivery room may be misplaced.

Tiny Babies, Fragile Families

About a month ago I wrote about a writer, Andrea Ball, who was asking for input from preemie parents.

Andrea, a preemie parent herself, writes about a Texas family who have 3 preemies. This is not a piece glorifying prematurity but rather an honest account of life after the birth of a preemie (or 3).

Sending a HUGE thank you to the Nash family for being so open with their struggles. It is your honesty that will help others to know they are not alone.

Gratitude also goes to the families who sent their stories to Andrea. You can read about them on the right side bar in each story.

And, thank you to Andrea for being brave within her profession. If more people in the media could step out side of the box, like Andrea chose to do, the misconceptions of life with a preemie would start to change.

Part one
http://www.statesman.com/news/content/news/stories/local/archive/0908preemies.html

Part two
http://www.statesman.com/news/content/news/stories/local/archive/0909preemies.html

Free On-line CME Course-Spasticity

The Roles of Nursing, Physical Therapy, and Occupational Therapy in the Management of Spasticity and Movement Disorders Encountered in Persons with Cerebral Palsy

http://www.epliveonline.org/eplive-spasticity0911.html

It will take place on September 11th.

If you've never "attended" one of these, sponsored by Exceptional Parent Magazine, give it a try. It's always well done and very informative.

Medical Bills and Insurance

(taking a deep breath)

First let me say that I used to be an insurance agent (main focus on auto, home and life). I love the idea of insurance, paying ahead of time so you are covered "just in case". I used to be an insurance junkie. Maximum coverage on auto and home, disability, liability umbrellas and let's not forget life insurance. We had it all. Having taken many claims, for all types of issues, I have seen what good coverage can do for a family during the worst times in their lives.

Then there is health insurance. Ugh!!!

When I was pregnant with Paige, we were paying for our own health insurance. An HMO. They paid for every bit of my prenatal care, every bit of *my* hospital stay when my water broke and every bit of my c-section.

Then comes Paige's NICU bills. Ouch. Her total bill was over $500,000. Insurance would not pay for any meds used "off label". Ummm... that accounts for almost all meds used in the NICU!

After all was said and done, we owed a boat load of money to the hospital. They refused to work with us. I called the insurance company. They refused to work with us. We spent the next year trying to pay off this enormous debt, along with all of the on-going medical bills that preemie families encounter in the beginning. Even though we had insurance, the co-pays and non covered items buried us. Then there are the bills that were piling up from the credit cards. We charged gas, food, etc while we were going back and forth to the NICU (90 miles away) for 78 days. We finally filed bankruptcy.

Every year our health insurance premiums went up. Since Paige was uninsurable, we were forced to pay out almost $1,000 per month in order to keep the policy! This was on top of paying the bills that they did not cover. Oh, the prescription coverage... max. the insurance company paid was $500 per year. Paige has Epilepsy. Two months of Trileptal and one fill of her rescue meds and we were over our limit!

After a few years hubby got a job with a very large company and one of the perks was health insurance! Whew, finally some relief.

Or so I thought.

Between our required out of pocket costs and paying for therapies that were not covered, we were still struggling. Then there are the co-pays. $30 for each specialist. Doesn't sound like much, right? But, when you see 10 specialists in one month, have an out-patient test done and have a few therapies, total medical bills for the month could easily top $1,000. I am thankful for the months when we only have to see a few specialists.

What about all of the on-going needs that insurance companies do not cover? What about doctors that are out of network when you don't have any doctors in your area who are in network?

Don't talk to me about state waivers... most all states have their criteria set so hardly anyone can qualify. Don't talk to me about financial assistance... hubby earns too much money and hardly any group will look beyond the paycheck and take the time to see how much we spend out of our own pocket.

We have it easy. I know of many families who struggle more than we do.

The only tip I can offer is to appeal every decision your insurance company makes. If you are not satisfied with the outcome, file a complaint with your state's Department of Insurance. It's easy to do. Use the search words "[insert your state here] department of insurance". You can even file the complaint on line. We have gotten a few big bills covered this way.

Financial strain... definitely needs to be included when discussing the list of long term issues related to prematurity!

(ok, before I end here, I know someone will email me or leave a comment that they feel that I am bitter about my daughter surviving. Move on people. I love my daughter. But that does not mean I cannot discuss our daily struggles.)

Executive Decisions

It's time for another installment of... Hubby Teasing Time.

(in case you need to catch up, read here and here)

For all you dad's out there, executive decisions are ALWAYS best left to the mom.

My husband made 2 of them lately, without consulting me first.

The first one came the day we were at the mall, pushing her around in the wheelchair. We were strolling along, me pushing our little guy and him pushing Paige when he blurts out, "Hey Paige, do you want to get your ears pierced?"

Did I hear him right? Did he just ask our fashion princess, wanna be teenager, master accessorizer, 8 year old with severe sensory issues, if she wanted her ears pierced? Without asking me first? I must have heard wrong. That's a pretty big executive decision for a dad to make!

Nope, I had heard correctly and as I am picking my jaw off of the floor, Paige answers, "Really? All right!"

Daddy turns to me with this, "Oh shit. I didn't think she would say yes" look on his face.





The second executive decision came a few weeks after that first one. His mother and her husband were over eating dinner with us. Paige had been especially off the wall that day and we both We were just about finished eating when Daddy says, "So Paige, do you want to sleep over at Grandma's tonight?"


Did he actually make yet another executive decision without asking me first?

Once again that "oh shit" look came over him when she said "yes"?

Sleeping over at Grandma's. No big deal right? But what you don't know is that Paige has never slept away from home and has never even been put to bed without both of us there. And, let us not forget her sound sensitivity... IT WAS THE NIGHT OF THE 4TH OF JULY. And, on top of all of that, we were expecting a severe thunderstorm.

All in all it worked out. Paige stayed up, out of fear from all of the noise, until past 2am. She liked staying at Grandma's and Daddy and I did ok too. (ok, so I cried a little).

Let's just hope that Daddy learned his lesson on making those executive decisions! I wonder what will come out of his mouth next.

Are you wondering about her ears? ....

Sound Sensitivity and Indoor Water Parks

This is what Paige looks like at indoor water parks... her hands never come off of her ears.

Out of all of the sensory issues that Paige's battles on a daily basis, sound is the worst, by far.

She was 3 when we visited a hotel/indoor water park for the first time. It was a very small one, which only had a few slides. We figured she would have a blast since she loves water so much, but we never took into account the noise level. Needless to say, day one of the first indoor water park visit ended in a major meltdown. We continued our stay and tried the water park in short bursts the next day. Even though she hated the sound, her love of playing in water overrode her sensory issues.

We've been going to hotel/indoor water parks almost every year since that first visit. She really loves it but we still can't stay in there the whole day. This past visit we tried to get her to lower her hands in hopes that she would get used to the noise. No such luck.

I take that back... only once did I get her to lower her hands.... just long enough to snap the picture.

Hands on ears aside... we love seeing her so happy!

At least she no longer melts down at the end of a day at the water park. Here she is with her brother, right after swimming all day.

How Much Do You Tell?

This was part of my last post but I felt it needed one of its own...

One aspect of having a preemie that I have given a lot of thought to over the years, is not knowing how much history to give to certain people.

Giving a complete history to a new doc/specialist is a no brainer.

But, what about school forms?

The classroom teacher?

The piano teacher?

Parent of her friend?

Neighbors?

Strangers who inquire about her size/behavior/distinct look?

I know my feelings on this subject are colored by the past. But I am still left wondering... "Who needs to know what?" Will she be judged differently if they know she is a former preemie? Will she be judged unfairly (behavior wise) if I don't tell them she is a former preemie. If they know she is a preemie, when she acts differently, will they be more understanding? Will that "understanding" take the form of allowing her to get away with negative behavior? If they know her history, will they not challenge her as much as the next child?

Thoughts anyone?

Don't Tell Her That!

Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.

Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."

Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.

Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.

I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.

Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.

During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?

We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."

Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.

She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.

As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.

I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!

I'm Taking a Break

Prayer/Religion/Spirituality

I've started this post and set it aside many times.

My wish is that we all can have an honest discussion about how having a child born premature (or the loss of a preemie) has changed our views on prayer/religion and spirituality.

My fear is that the discussion is going to turn nasty and unproductive.

I'm willing to give it a try.

My thoughts...

I was raised Catholic, even going to Catholic school for bit. I began to question organized religion very early on. I can recall a conversation that I initiated when I was 10 and was told that I was too intelligent and, "you just have to have faith." If someone had actually sat me down and had an educated discussion, I may not have strayed.

As I got older (teens) I started to feel guilty for the feelings I was having. Oh that Catholic guilt! Again I approached people who should have been able to help and again was told to have faith.

In my early 20's I did some honest soul searching. Now on my own, I no longer was forced to attend church. I started reading about other religions but nothing seemed to fit. I really felt lost. It's hard to explain but others who have been there will understand.

Then my water broke at 23 weeks. I was 30. I immediately reverted back to prayer and a whole lotta begging to God. People were calling me in the hospital and telling me that they were praying too. Prayers chains were linking all over the country, all for my child.

Some told me, "if you pray hard enough, everything will be ok."

When Paige was born I immediately felt that I must not have prayed enough. And, I surely must not be worthy. What a horrible feeling to have as I was laying on the operating table!

The next day, while my precious baby (whom I still had not seen) was fighting for her life in the NICU, one of our dogs died. He was my first baby. I had been separated from him for almost 3 weeks due to being on hospital bed rest after my water broke. My MIL called the nurses station and the nurse pulled hubby out of my room to tell him. He was crying when he came back in. I thought for sure we had lost our child. When he told me that it was our dog, I swore, out loud-at the top of my lungs, at God. That guilt was too much to bear. What a cruel chain of events.

During her NICU stay, people prayed over her. When she would pass a hurdle, they would claim that God was at hand and had spared her. What was the excuse when she would have a setback? Where was God then?

Why is it that God gets the credit for good things but is spared the credit for the bad?

Over the years I have struggled with my feelings regarding "God". It has not been easy to feel this way. I've tried searching for something that will bring me back, but just keep on coming back to the same place....

Was the theory of "God" just created by humans? Why would a person who has the ability to stop pain, actually allow our children to suffer?

I do hope we can all have a civil discussion. So many are passionate about their beliefs that sometimes that passion came come across as rude.

Before you type a comment, do so from this perspective... The comment you leave could help someone who needs help/direction. If you are nasty, you will only drive people away. Instead of simply quoting the bible, please talk about YOUR own personal feelings.

Lastly, if this discussion gets out of control, I will shut it down. Many parents are very vulnerable right now, struggling with all facets of prematurity. They surely do not need to feel attacked for how they are feeling or what they may have gone through.

The Preemie Project

I received an email (below) from a reporter, Andrea Ball, asking for help from preemie parents. She is also the parent of a preemie.

If anyone would like to participate, all of the details are below.

Stacy


Dear Preemie Parent:

Hi. My name is Andrea Ball and I am a reporter with the AustinAmerican-Statesman in Austin, Texas.

I am writing a large story about the mental health effects of premature birth on families. This story is funded in large part by the Rosalynn CarterMental Health Journalism Fellowship Program.

The main story follows a family with three premature children. We look attheir childrens' hospital stay, their challenges at home, the effects on theparents' marriage and the financial problems caused by medical costs. Weexplore the issues of depression, anxiety and post traumatic stressdisorder. We are also looking at the long-term effects on prematurity on thechild.

As part of this, the newspaper would like an online presence of parents whohave been through all this.
If you are interested, please answer the following questions and email them to rquigley@statesman.com and aball@statesman.com>
Please make sure you put the words PREEMIE PROJECT in the subject line so we are sure to see it. Here's what we need:

Your name
Your child's name
Your city and state and country
Hospital photos and current photos of your child.
If you have videos of your child on YouTube, please send us a link.

Then, please answer these questions (there is no word limit):

What were the circumstances of your premature birth and at what gestation did the baby arrive?

What was your NICU experience?

What has been your experience since your child came home?

Please discuss any mental health effects you or your child have experienced as a result of prematurity (depression, anxiety, post traumatic stress disorder, marital stress, OCD, bipolar disorder)

Please discuss resources you used to get your family through the stressful/emotional part of this time. (counselors, spiritual leaders, etc)

Thank you so much for your help. Your kindness is greatly appreciated.

Andrea Ball

P.S. If you would like to learn more about my work, you can see me here:
http://www.cartercenter.org/health/mental_health/archive/author/ball.html