I'm published!

She had a hard time growing

When Jennifer DeCesari learned that she was about to deliver her baby at 28 weeks, her first reaction was to say, “I’m a preemie, too. Everything will be OK.”

But now, DeCesari sees in her daughter’s struggles reminders of her own painful childhood. And she has found that everything is not OK.

DeCesari was born in Boston in 1978 at 30 weeks’ gestation, weighing just over 3 pounds. She was socially immature, physically weak and uncoordinated until high school — a scared, awkward little girl who got so lonely at lunchtime that she’d talk with her mother on a pay phone.

“I see similar things in my daughter,” DeCesari says now. Arianna was born in March 2006 weighing just under 3 pounds. Despite a comparatively easy time in the neonatal intensive care unit — the baby needed a ventilator for only 18 hours –– Arianna has had a hard time growing since she came home. She got sick immediately, required two hospitalizations and fell prey to every bug that wafted by.

DeCesari could not leave her job as a computer programmer because she held the health benefits for the family. To keep Arianna away from the germs in day care, she spent her salary on a nanny. Eventually her husband, Shawn, got a job with benefits and DeCesari left hers.

Meanwhile the little girl developed severe reflux and to this day has difficulty eating. At age 3, Arianna is physically fragile and very tiny: at her June checkup she measured 33 inches tall, and weighed 26½ pounds. She didn’t walk until she was 1½ and today still has to crawl to get up the stairs. She has asthma and catches colds easily. She has a stutter.

“She gets sick a lot,” DeCesari says. “Every single time she gets a cold she doesn’t eat for a week. They’ll weigh her, they’ll look at me, ‘She’s lost more weight.’ … Frequently she’s off the [growth] chart, not even on the chart. No matter what I pump into her she doesn’t gain any weight.”

Now DeCesari, who lives in Cumberland, is wrangling with the school system to get services for Arianna, facing long waiting lists for programs such as speech therapy. But Arianna is bright, already able to read.

Looking ahead to Arianna’s school days, DeCesari says, “She’ll be emotionally behind all the children her age, making her a target for teasing, and will have some attention and focusing problems. … I don’t see her childhood being an easy one.”

But DeCesari remembers that once she got to high school, her own social problems improved. She did well academically and attended college. She thinks prematurity hasn’t affected her adult life, except for some vision problems. And she hopes Arianna will be as fortunate.

My girls

Today was another preemie dig at my heart & soul.

Arianna had her 3 year pediatrician appointment.

She's 36" tall, finally. But lost weight, again. She's 26 lbs. 1 oz. She has a cold, no surprise, but I think we've come to the conclusion she has asthma and will need to be on medicine now. Although this is totally no surprise to me I'm bummed. Being a preemie has hit her hard for being a nearly 29 weeker. Heck, I was only 2 oz. bigger than her when I was born at 30 weeks and I haven't dealt with what she's dealt with. It makes me sad and feel guilty at the same time.

On the bright side though we're working hard on our phonics and math and she's doing great. She can read a few words and what she can't read she can at least sound out phonetically and sometimes figures them out. She's really amazing me with the attention level she has for this.

Gross motor wise, well... she's really far behind. I see it more and more. She goes to gymnastics and can't do anything the 2 year olds can do. Her gait is really immature for a 3 year old, she can't/won't jump, can't/won't 'do' stairs and is very clumsy - to the point that I think she's a danger to herself. But, as her pediatrician pointed out, it's not delaying her advancement so we'll just let it 'get better'. Well how can it get better without help? I'm really concerned about it and don't feel I'm getting much help.

She still stutters, especially when asking a question, but apparently they don't do anything about it until age 5 and even then its done through the school system which is backlogged, under staffed and unorganized.

Daria is 7 months now and weighing in at a very hefty 19 lbs. She's in the 90th percentile for weight and 75th percentile for height - she's just a moose! She sits up on her own fully now, gets up on her hands and knees for crawling (but thank god doesn't do it yet), is experimenting with solid food and today she said 'mama'. She has the most infectious laugh and is totally a dream baby - sleeps well and hardly ever fusses. She nurses avidly and makes me so very happy - she's my sanity saver when Arianna is 'in a mood'.

What post would be complete without pictures of my babies? I took these last week at the Roger Williams Park Botanical Gardens.

They like me, they really really like me

I was interviewed for an article on pregnancy after having a preemie. The article is here.

Unlike Glad, Jennifer D of Cumberland, R.I., knew when she was pregnant with her first child that she was at increased risk of giving birth prematurely. Due to a bout with cervical cancer at age 18, she had already been diagnosed with an incompetent cervix. In addition, she'd been a preemie herself – born in 1978 at 30 weeks. In spite of all those warning signs, she says her doctor didn't take any special precautions, and her daughter, Arianna, now 3, still has issues related to her birth at 28 weeks.

When Jennifer got pregnant with her second child she went back to the same doctor armed with more than a year's worth of research. She wanted to discuss having a procedure called a cerclage, often used in cases of incompetent cervix, where the cervix is stitched closed. She also wanted to discuss other options for preventing prematurity, such as progesterone shots and more frequent ultrasounds. Her doctor, however, still did not take her increased risk seriously.

"I felt like I'd hit a brick wall when I went back to my original practice," Jennifer says. "When I told them what I wanted to do to try to prevent another premature birth, they didn't want to commit to anything. They said they couldn't say what they'd be able to do differently than the first time. I told them I was sorry, but I'd have to find a new doctor."

The new practice worked closely with Jennifer. She had a cerclage at 13 weeks, supplemented that with progesterone, and was scheduled for weekly appointments and ultrasounds. Her second daughter, Daria, was born healthy and full-term.

I feel so spe-shell

Introversion and prematurity: A link?

Wednesday was Arianna's day at daycare.

When we made the decision for me to stay home with the girls we agreed that Arianna should continue to have interaction with the boys at daycare because we saw it to be so good for her. She got along fabulously with all of them and when she was around them she did things she would never do at home - she would eat better, she would do more boy-ish things like climb and jump. She even potty trained better there. So it was a no-brainer that she should continue to go one day a week.

This Wednesday was not so great for her - she had two big temper tantrums and was very anti-social.

When I pick her up I typically stick around for a few minutes to chit chat. Her daycare teacher is expecting #2 in April after having her son at 35 weeks due to pPROM so our conversations have been centered around pregnancy as of late.

This week was different though. She asked me if we were doing any "Mommy and Me" classes. Truth be told all she does during the week that's scheduled is her day at daycare and 'story time' for 2 year olds at the library on Thursdays. Otherwise our days really focus on keeping Daria happy. But it seems I've done that to the detriment of Arianna.

Her teacher told me she's been noticing it over the last few weeks but didn't want to say anything until she knew for sure. She's concerned Arianna is socially regressing and becoming much more introverted. She knows the boys at daycare well and there haven't been any big changes there. Yes, her life at home did a complete 180 but daycare has been stagnant. She doesn't play with the boys anymore and is suddenly much more vocal about her demands to be by herself. She'd much rather go read books and be by herself. Her teacher even went as far as to say that she tries to not schedule outings for Wednesday because Arianna can be a big handful if they go tot he zoo or ecotarium and she throws a big fit cause she doesn't want to do something.

We've known this to be an issue and have been working on it without any success. Part of me wonders if this is her personality and how she'll be for the rest of her life? The worst part of her introversion is that she's really rude about wanting to be by herself - she'll go as far as blowing raspberries and slapping the air (in the general direction of whomever she's talking to) and saying "No!" really nastily. She does this all the time she doesn't get her way. If you continue to say no to her she will throw herself on the ground, face first and cry - and it doesn't matter who she is with or where she is at. Karah, her teacher, said the grocery store was a favorite place for her to do her 'drama queen pose' as she calls it. She laughs about it but I don't. None of us believe this type of introversion is healthy in a 2 year old.

I don't know how to help her work through this. I know she is shy, not so sure its full on introversion, although she may be - but she is scared in alot of situations. She constantly wants someone with her - she'll even ask me "follow me please mom" when she wants to walk back to her room. She'll play with mom and dad until the sun goes down but not other kids.

Dad is a full on introvert - there's no other way to explain him, but... he has friends and enjoys conversation with others but he prefers to be by himself. Luckily his job as a computer programmer suits this personality trait well.

I'm more of an ambivert - showing traits of both an extrovert and introvert but as a child I was extremely shy and was horribly made fun of for it. I don't want this for my child. Arianna is incredibly sweet and kind when she's in a comfortable situation.

One of my main motivators for homeschooling is to shield Arianna from alot of the hurt that I experienced as a child. Some have told me that its 'part of growing up' - but I don't believe hate mail, black mail, bullying and physical harm have to be part of a normal child's life. How does putting up with those things make you a better adult? I don't believe it has much to do with it actually. I believe you can learn all you need to about corporate politics from real life experience with it - not by having a bully tear you down. But... being away from a public school setting does limit, somewhat, her ability to interact with other children and build her social skills with other children on a daily basis.

Unfortunately I think Arianna may be headed in the same direction and I don't know what to do. I don't know what my parents could have done to help me, so how do I help my daughter? I do know that finding something I could excel in helped to bolster my self confidence but that didn't happen until I was 14 or 15 when I became very interested in and good at my clarinet and saxophone.

I found this link that explains a bit about causes of introversion and am intrigued by it, especially the nurture vs. nature aspect and brain development aspect.

Does being a preemie make you more vulnerable to this type of situation? Does weeks on end in an incubator separated from mom make you more susceptible to introversion?

I don't know. All I can compare is myself to her and I spent alot more time in an incubator than she did and the hospital I was at was more of the "we'll call you when she's ready to go home" type. How sad...

Does premature birth run in your family?

Premature birth runs in my family - My grandmother had many problems
carrying to term resulting in several deaths, I was born at 30 weeks,
my brother at 34 weeks and my daughter at 28 weeks.

There is a study at Washington University School of Medicine that is
recruiting people that have a familial history of preterm birth.

If you have a familial history PLEASE sign up for the study. It
involves 2 parts - a questionnaire and a DNA sample (via saliva).

http://fetalstudy.wustl.edu/fetal/fetalp.nsf/

I hope you can all agree that it would give all preemie moms great joy
to know they helped further the study of why preterm birth occurs and
possibly find an answer!

Saying my piece

I've been very busy adding a new pantry to my kitchen and painting my bedroom but this has not been far from my mind.

A recent discussion was started at The Preemie Experiment that has me, and other preemie blog moms, outraged.

No, the discussion is not about resuscitation of extremely preterm infants. No, the discussion is not about comfort care for said infants.

The discussion was about the value of a preemie.

The conversation started like this:

"And those of us who are thankful for our children and blog about them don't pretend everything is fine. Some people, including me, believe the fact that our children are alive is a miracle. I personally think all children are miracles but that's another story. We don't sugar coat our lives Terri. We blog about our every day struggles, joys, and affects that these children have on our lives. Just because we're not unhappy they are alive does not mean that our blogs claim all in the prematurity world is miraculous. Why do you see everything as black or white? We write about projectile vomit (some even post pictures), we write about numerous doctors appointments, physical therapy, CP diagnosis, PVL, oxygen needs, g-tubes, oral aversion, SPD dx, the list goes on and on. Sometimes we are frustrated, depressed, and extremely sleep deprived, and we need to vent and get support from those who know what we're going through. Sometimes we are posts are filled with joy when our children reach another milestone. We bounce ideas off one another so that we can have more information when books and outsider's advice don't pertain to our kids. I don't what blogs you've been reading but the ones linked to this blog do not hide the realities of our lives. Some kids are in wheelchairs, pony walkers, and leg braces. Some kids have shunts and are currently in the hospital.

The difference is we celebrate their lives and for some reason that is insulting to some here."

"The preemie path isn't all doom and gloom. Its not as 'easy' as most full term paths (if any of it is really easy) but its not horrible either.
We preemie parents rejoice at sitting up more than full term moms. We rejoice at coming off the vent where full term moms don't even know what that is. We rejoice (as TPE has) when our child rides a bike, probably more than most full term ones. We rejoice when our child does good in school, probably even more so than most unaffected full term ones.

If anything I see the preemie path being MORE rejoiceful (dare I say, miraculous) than most paths of full term children.

Are we mad that they came early? eys! Are we mad that they suffer from being a preemie? yes! But that doesn't mean we can't rejoice in what they do manage to do and find joy in the little things - things full term parents can't understand.

Having that outlook is good - much better for our children too.

It's not all doom and gloom! Its only that way if you make it."

"Your comments are YOUR response NOT we preemie parents. I am a mom to a moderately impacted 25 weeker and I communicate daily withother moms of micros born in the same 2-3 span as my son. I can tell you that you DONT speak for any of them. Please refrain from acting as though your superior "mothering" of a preemie speaks for all as it really doesnt and just perpetuates the martyr image which makes me ill.

Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth. Pain, suffering yes but miraculous? No."

"Yes, the fact that our children are alive is a miracle. Rejoicing in what they can accomplish is so much better for your children. Yes, its tragic that they came early and suffer life long for it (my son (a 26 weeker surviving twin) will never be like his friends - he's deaf and has SPD), but we celebrate the things he accomplishes because they really are so big for him!

Do we use such phrases as:"Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth." around him or to describe any aspect of him? Heck no!

His birth was tragic and there is no rejoicing in that, but his life is miraculous - everything he does is a miracle, moreso because of his tragic birth! Being a preemie doesn't change the fact that, to us, he's a miracle. The day the tube comes out and he eats on his own will be a miracle we will definitely rejoice in, just like so much he does.

That's the difference myself and 23wktwins'mommy are talking about - while there birth is horrible and not something to be really celebrated, their life is - no matter how affected.

Harboring such negativity about situations one can't control is not good for anyone or the child.

Am I saying be unrealistically happy and forget about all the research and statistics and all that? No! But at the same time it shouldn't cloud your overall view... I get the feeling, especially from 'terri w/2' that that is the case.

Prematurity is a tragedy but it doesn't have to the negative focus many here make it. There are many who agree with 23wk and me - but they don't post here anymore because of the negativity. You don't see too many of the active preemie mom bloggers posting here anymore do you? No, because they are trying to be as optimistic about their children as they can while keeping the 'research' in the back of their head. As a matter of fact I almost learn more about prematurity from reading Holland and Eden's blog than this one...

Someone has cancer and will die - does living out their last days in anger make it any better? My aunt died of stomach cancer 2 years ago (which for anyone knowing about it, once its found you usually have a few weeks)but spent her remaining months very optimistic and as happy as she could muster - her doctors believed it helped her live much longer... and I believe there is research to back that up.

I truly believe that doing this rejoicing is better for our son. My son will never be like his peers and may never live on his own but I accept that and find joy where I can.

We are pregnant and already have a DNR for prior to 26 weeks (if the hospital acknowledges it is another issue), yet our son was born at 26 weeks - this doesn't mean we love our son less because of his gestation but we are aware of the risks and accept them now."

"Your reality is not everyones. What I mean is how you feel/cope etc works for YOU. To imply that others should do what you do is what bothers me. I dont love my son any less than you love yours. The difference is that I have a different belief than you. This doesnt make you right and me wrong, nor vice versa. Im glad you have found what works for YOU.

I find it VERY insulting that those that disagree with you are some how wrong.

To you it is a miracle your son is alive. To me it is modern medicine which is NOT miraculous. I can agree to disagree without insulting you. Can you do the same?

On the note of many bloggers not posting here any longer I have a different take. Most of the crop of bloggers kids are <3>

Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.

I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better. (This was not her exact phrase but what i got from it. If I misinterpreted I am sorry Chris)"

"Are you for real? Do you really think that a preemie mom who blogs about how much they love their child or how fantastic they are are living in some dream world?

So a preemie mom writing about how much she loves her child with CP, deaf, feeding disorder, and enjoys every moment she has with her child is doing so out of denial?

So I guess a life of disability is not worth living?

Wow... it's not possible to find joy in a disabled child huh?

If I were you I'd think before you post and insult so many of the preemie moms here."

Anyone who has spent any amount of time reading some of my preemie related posts here knows that I can not judge a parent who has chosen to resuscitate their child (I did), and can not judge a parent who has chosen comfort care (I will if a child we have is born prior to 26 weeks) - I wouldn't even know where to try as its such a unique/personal decision.

My daughter was born at 28 weeks - she was intubated for 18 hours. If she had not been she may have died. I did not have a choice in the matter and that was fine by me as I was convinced,and still am, that everything would be fine and it was the correct decision.

I love my daughter, more than ANYTHING in this world - she is my world. I do not regret, for a moment any of the decisions made in the NICU during her 6 week stay there (despite the lack of privacy and breastfeeding support). The hospital she was at was fantastic and they did right by my family.

My decision to resuscitate a micro preemie has not changed either. I never had an opinion on it because I never imagined it would be a decision I would have to make but I am sure that prior to 26 weeks I will need very convincing evidence that my child is behaving as a more mature premature infant (oxymoron huh?) to agree to artificial prolongation of its life. This is mainly due to neurological issues that can arise. Can those arise at any gestation? Yes... but the probability of those issue occurring increase at lesser gestation and its not something we are comfortable with.

This does not mean that I think that families who chose a route we would not are wrong! Let me repeat that. This does not mean that I think that families who chose a route we would not are wrong!

The comments I am posting about above are slightly different, even though they originated from the discussion about resuscitation. What infuriates me is this comment in particular:
"I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."

I feel horrible that I was not able to carry my daughter to term - this is a guilt that is very hard to get rid of. What if I had gone to the hospital sooner? What if I had done this? What if I had insisted on that? A million different scenario's run through your head but in the end it doesn't change anything - it is what it is and you have to move on.

The process of moving on, for many preemie moms, is starting a blog, like I have and talking about our children and sharing all the joy and sorrow that goes with it. I don't lie - life with Arianna has been hard. She's failure to thrive and has gross motor delay and her premature birth has had very real emotional/financial impact. I read alot of other preemie mom blogs whose children have a variety of issues and NEVER once did I read a blog and think - this mom is in denial that her child has some serious issues. Never once.

There is no lack of evidence/studies/statistics out there to tell preemie parents that their child will not be 'normal'. They didn't have these studies when I was an infant - my parents did have a clue what they were up against when I was born at barely 30 weeks (I was only 1 oz. larger than my daughter at birth). Retinopathy of Prematurity? What's that? My husband has a friend who is exactly one year older than me (we share a birthday) who is blind from ROP/extended vent time. My parents didn't have a clue what that even was when I talked to them about it today (as we were painting my bedroom, none the less) - my mom didn't even hold me until I was a month old and I spent 8 weeks on a ventilator. I was 13 lbs. at a year old and didn't walk until I was 19 months.

I'm not blind and although I was cross eyed as a child (which my friend Kate's full term daughter is having surgery on next week) I wore glasses. I graduated in the top half of my high school class and have a math centered degree in computer programming. I'm articulate and pretty darn bright. I'm married to a great man, we own our home and have a beautiful daughter.

Many of the troubles I had growing up were equally shared by my full term peers.

I'm a preemie statisticians worst nightmare. I'm Helen Harrison's worst nightmare - I'm a preemie that turned out great! Look at me everyone!! I'm a functioning, excelling member of society!

“A child’s outcome is directly linked to their parents and their environment.”

But I'm also not ignorant to the fact that many premature infants don't share my fate - many are suffering and many families are torn. Some of those families even tried to stop the suffering but ran into road blocks or didn't fully know the extent of the problems until they didn't have a chance to put an end to it.

My daughter is only 19 months old - do I know what the future holds for her? No. But I do know she's doing better than me! She has no eye turn yet (I had a severe one at a year old), she was 17 lbs. at a year old and walked at 17 months. Thats pretty darn good. I can only hope that she does as well as I did growing up - and that we do as good, if not better, a job than my parents do (which on many days is very questionable). If at some point she becomes disabled or afflicted in some way will my love for her change? Will her VALUE to me change? No - and to the commenter's on Stacy's blog who insinuated that was the case for them, I'm so very sorry for your children because they deserve someone who values them despite their disabilities.

So when I blog about how great my daughter is doing at any one given task or on any one given day, or when I talk about how much I love her I am not ignoring the fact that she may have many problems as she gets older. I'm not living in a dream world and fully understand the risks she faces.

I think this is an issue many parents of preemies from my generation have issue with because the medicines/practice used on their infant had very dire consequences that were unknown at the time - such is the game you play in medicine, with anything: cancer, prematurity, epilepsy - you name it! Does that make it right? No! But that is a risk you take as a HUMAN BEING. Just being a part of this world requires risk... medicine is one of them. Not comfortable with the risk? Don't partake. Not comfortable with the possibility of having a child with a disorder/disability? Don't have kids!

I feel sorry for the parents of older preemies who feel it is their duty to shove their outcome down the throat of a 'new' preemie parents - share, yes; shove, no!

I really enjoyed reading Stacy's blog but her "community of people dedicated to the open discussion of the long term effects of prematurity" is toxic (to borrow 23wktwinsmommy's analogy - great one by the way!). There are no advantages to being born prematurely but there are many outcomes, equally ignored, that are good. I never even hear about them in the media - you only hear about them in the hospital. How about a follow up? So if there isn't a follow up it has to be ignored?

Being born at 26 weeks is not a horrible existance as several of the commenters on Stacy's blog say it is. The inscidence of prematurity related disabilities are still dwarfed by genetic disabilities that can also affect children. Do you ever hear about spina bifida parents screaming at you to NOT save a SB child? How about Down Syndrome? If anything I hear DS parents talk about how wonderful having a DS child can be - is it easy? NO! Is it heartbreaking? YES! Is it worth it? YES!

Now that I accept that Stacy's blog is nothing but a huge void of negatvity it holds no VALUE for me and I won't contribute to that type of community. Its a shame as I feel I was a good addition to her blog as an adult preemie and since so many had already abandoned it due to its 'tone'. If she was looking to build a community there she should make sure that people a) feel welcomed b) feel its balanced with more truth from a variety of sources (not just the 3 or 4 'dark clouds of doom'). More often than not I read Stacy's blog and get depressed for the commenters there because I have to read about the older preemie moms talking about how much they hate their lives. They say they love their children but talk about how much life with them sucks.

That's so sad for them. My parents loved parenting me and my brother, we have alot of fun together. My uncle in Texas loves parenting my 26 weeker triplet cousins (all of which he just sent off to college) and there are many preemie parents who would say the same - I just wish more was done on her blog to seek out what they have to say. Their long term affects of prematurity are just as valued and a voice needs to be given to them too.

I'm sure parents of children with specific genetic disabilities talk about how hard their lives are, but I'm quite sure they don't breed a 'community' that makes newcomers feel like their decision to give birth to a child with a disability was the wrong one.

I realize thats not the intent of Stacy's blog and I hope that people who realize this know what they are getting into if they get involved in that 'community'.

And no, I don't feel guilty for bringing that blog post to the attention of the preemie blog community - more of them need to be aware of the intolerance being spread, and especially the lack of trying to stop it.

There will be no comments allowed on this post. If you would like to talk to me about it please email me: mai_lin@hotmail.com

Playing Russian Roulette with God

This is a sore subject for me and I've put off writing about it for many months - actually before I ever started this blog this was a sore subject for me.

Recently there have been comments at The Preemie Experiment that hint at resuscitation limits on micro-preemies. The comments don't come right out and say it, but its implied and the subject is danced around... a lot.

This is a hard subject, as a parent, to even think about, but parents of preemies or those affected by prematurity understand it well.

Do you set a limit on when you would allow your child to be 'saved' by the medical establishment?

I do. My husband and I have spent many nights talking about this.

I first brought it up a year ago when I came across the story of a 30-weeker who was suffering greatly from an IVH resulting from his premature birth. An MRI at age 3 was so bad the doctors said they were shocked he was alive. At 5 years old he was in a vegetative state and did not know anyone, suffered daily seizures that were getting worse and was breathing and eating artificially. His parents made the decision (with doctor support) to withhold his food in an effort to end his suffering - a la Terry Schiavo. It took him 4 weeks to pass away.

His parents divorced a year after his birth when he was first transferred to a rehabilitation nursery/hospital. His mother couldn't work as taking care of him required all her time/effort so they lived in subsidized housing. She got all her clothes from Goodwill and relied on her church for handouts. She had no real friends because her time was so focused on her son (despite 24/7 nursing care). She was attempting to go back to school but the night classes were taking a long time. She had essentially lost her identity.

The story I read about this family was heart breaking. His parents attempted to withdraw life support systems from their boy when he was 2 weeks old but due to his gestational age the hospital took temporary custody of him and barred the family from making any decisions about his care. The courts stepped in and 'saved' the boy. The doctors stepped in and 'saved' him to live a life dependent on machines with no brain left to use.

His parents regained control when he was 10 months old but by that time he was stable enough to be transferred to another hospital and life as they knew it would be turned upside down, again.

His mother said, time and time again that the aggravation they felt for themselves was nothing compared to the aggravation they felt for their son. By the time he was 2 he had undergone 17 surgeries, by the time his death came about he had undergone more than 30. His mother said she hated holding her son while watching him go through a 30 minute seizure or filling his feeding pump only for him to rip out the tubing and have it go EVERYWHERE but into him, where it belonged.

Where is the fairness in condemning a boy and family to a life consisting of this? At what point does someone get to say 'Enough!'?

In 1950 my grandmother gave birth to her first child, a boy, prematurely. I'm not sure how much because she never talked about it and no one asked. His name was Richard but he was called Dicky. Dicky was 4 years old when my mother was born, followed 2 years later by my twin uncles. When Dicky was 6 he was institutionalized.

Dicky was a 60 lb newborn at that point. He couldn't walk or talk and had, what my grandmother called, 'fits' on a daily basis. My grandfather suffered from mental illness and spent the majority of my mothers childhood as a guinea pig for many of the medications now in use (and not in use) to treat mental illness and as such was absent from their lives. Although they never divorced, my grandparents were never 'married' and my grandfathers death in 1988 was a relief to my grandmother. My grandmother had no help and had to institutionalize Dicky.

They visited him twice my mother said. At age 21 he choked on food (chicken bone?) and died. My grandmother, to the day she died, never talked about Dicky.

I saw pictures of him - he looked just like my brother when my brother was a baby, cute little brown curls and round cheeks.

A few years ago I went to my grandmother's family reunion. I knew nothing of these people - I had only met one of them once in my life. My mother had little to do with them also but my grandmother had recently gone into a nursing home and we wanted to get in touch with everyone.

I met a bunch of really nice people. My grandmother, as it turns out, was the oldest of 10 children. Her mother died of breast cancer when she was young and her father died at the kitchen table of a severe asthma attack when she was a teenager. The 'state' took the four youngest and a cousin moved in with my grandmother to help her raise the rest. She had, essentially, raised children since she was one herself.

At the cookout I heard her sisters/brothers talk about how rough my grandmother had it when trying to get help for Dicky when he was very young. I'm glad I'm born in the time I am now because there is much more help now for struggling mothers. It helped put her life/trials into perspective for me.

When Arianna was born, rather when I was in labor with her I remember a resident in the ER telling me, 'It'll be ok...' and I looked at her point blank and said 'Of course it will be ok, I'm a preemie myself - she'll be fine!'

I'm a preemie and dealt with delivering a preemie myself yet I was not aware, at the time, of all the dangers of being born prematurely. Just after she came home from the hospital (and then back to the PICU) I started doing some research and came across the 'prematurity secret' (at least thats what it seemed like to me) - its not all 'teeny tiny babies who grow up to be fine'. There are a lot of preemies severely affected by their births and with the prematurity rate rising as much as it is, yet the severity of its impact not declining, thats really scary!

Last fall we made a conscious decision. If we decide to have another child we do not want to use medical intervention to keep me pregnant if delivery is imminent prior to 26 weeks. How will we do this? I don't know how (or if!) just yet, but I'm terrified. I sat in my OBs office just a few weeks ago and cried so hard she couldn't understand me when I talked about trying again. The worst part was when she told me I may not have say in what happens in the delivery room.

Parents are not allowed that say:

The Baby Doe Law or Baby Doe Amendment is the name of an amendment to the Child Abuse Law passed in 1984 that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns.

The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is "virtually futile" in terms of the newborn's survival. Concerns about a child's quality of life, which are often the primary factors in deciding to withhold medical treatment from premature infants, are no longer seen as valid reasons for withholding medical care.

The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns that resulted from withheld medical treatment. The primary case was a 1982 incident involving "Baby Doe" a Bloomington, Indiana baby with Down syndrome whose parents declined surgery to correct a blocked intestine, leading to the baby's death. The Surgeon General of the U.S. at the time of this incident, C.Everett Koop, argued the child was denied treatment not because the treatment was risky but rather because the child was mentally retarded. Koop commented publicly that he disagreed with such withholding of treatment.

Is that right? I don't think so. Many parents want everything to be tried to save their children, whatever the outcome, and I wish I could share that. But knowing all that can happen and the suffering they could go through... I can't. Does this mean we should close up the baby shop? Yes, I think it does. No, I don't think so. It's like Russian Roulette. Who wants to play?

Does this mean we are unfit parents? Does this mean we don't have unconditional love? What is unconditional love in regards to the parent of a preemie?

Knowing my support unit, the history of my family and stories of other preemies we don't feel we are able to survive as a family if we had a micro preemie with severe problems... It makes me so very sad to post this and I know even in the preemie community I have no support - after all many preemies 'turn out just fine', but many also do not. I think you hear more about those that 'made it' than those who don't and that's too bad.

Why do some parents test for birth defects when pregnant? How often are those families chastised when they make the decision to end the pregnancy as a result? More often than not, people 'understand', right?

Why does the decision to have a child have to include such decision as: "Shall we get divorced?", "Shall we lose half our income?", "Shall we lose all our friends?", "Shall we give up going out together on a date night or on a vacation?", "Shall we give up any thought of retirement?". These are all realities for a lot of families with severely affected preemies - and thats just the parents side.

How about "Shall we try surgery again?", "Shall we try to get the lift in the house for junior? He's too heavy for me to carry", "Shall we try putting him in a group home now?"... Why do ANY parents have to think of ANY of these things?!

There are far to many families who suffer life long from prematurity and we, as a married, devoted couple feel we can not... Knowing my reaction to stress, we know I can't.

Why not see how they do and then make the decision? Because many times that decision is taken away from parents! (I'll have to dig up the exact lawsuits in the literature so I don't have them to post here)

The decision to have a child should be a happy one and instead we are terrified and ashamed.

Veins

We've been very fortunate to find a great financial planner. His name is Gary Coleman (no, not the 'whatyoutalkinboutWillis' Gary Coleman) and he found me a life insurance company that will 'look into' offering me a policy. Because of my implanted defibrillator I am pretty much excempt from life insurance - but I consider it a very important part of our financial planning. Plus, I won't skydive if I don't have life insurance.

Anyway, today was my paramedical exam. I had the examiner meet me at my office as I didn't want to have to go somewhere to do it having already taken so much time out of the office this week. We had to crowd into the ladies room as I didn't really want to do it in my office conference room. Yes, it was a male examiner, of course - so it was odd.

He did all the normal stuff - taking my blood pressure, which is always rediculously low, getting my weight (I really like his scale), urine test, and then the ever fun blood test.

I have bad veins... actually thats an understatement. I have no idea how my appendages are healthy as my veins are so small and hard to find I don't actually know how they get blood.

When I was a child I never really needed blood tests so I never knew how bad getting blood would be. The only glimpse into this I got as a child was when I was 7 (and then again at 10 and 14) when I had to have special 'dye' imaging done to assess my kidney and bladder function. The technicians would always comment about how difficult it was to find a vein to use to insert the dye.

Fast forward to age 20 when I had my first pacemaker/defibrillator combo implanted. I woke up half way through the surgery because the vein they managed to get an IV into blew and my hand was swelling up like a balloon. I had to stay in the hospital for 2 days after the surgery and went through 9 (yes, 9 IVs). When I left the nurses simply told me to be sure I got a PICC line next time I had surgery.

Fast forward to age 27 when I was pregnant and in labor. Magnesium Sulfate is not nice to tiny veins, it hurts. Only 6 IVs those 2 days.

Getting blood has always been horrible. I don't donate anymore because the technicians can NEVER get a vein that works. I remember being in the emergency room after a fainting spell before my defibrillator implant and the technician actually had to resort to getting blood out of my foot (a la neonate style)... that was fun!

Today was no exception.

At first he tried with a normal, adult gauge needle. I told him, as he pulled it out of his bag, "Do you have a butterfly in there?" as I know I need the butterfly needles (typically used on small veins and children) "Yes, but its my last one I'm trying to save it; this is the same gauge", Um, no it wasn't and no it didn't work.

We tried both arms without luck, my left hand and lastly my right hand. I have a good vein in my right hand but I don't like to tell them about it because it runs right over a bony part of my wrist and its unbelievably painful. Well that was the only place left... and yes it did work, and yes it was painful. Not only that but it took forever to fill the large test tubes as its a very small vein.

But he got what he needed and now I just need to wait for the rejection letter from the life insurance company (I'm not optimistic they will cover me).

Another side affect of my prematurity... along with my eye turn that gets worse when I'm tired, my kidney problems, my asthma, my compartment syndrome and possibly my Long QT Syndrome.

Would I have wanted my parents to change what they did? Not for a moment.

What the research says...

I've been doing a lot of research on prematurity in the last year. Even having grown up as a preemie I didn't truly know what to expect having one of my own and my personality type hates not being able to plan and the unknown makes me mad.

I doubt I'm the first preemie parent to get upset when you hear things such as "oh I was like that when I was little, she'll be fine" - yet they weren't born at 28 weeks, they were full term. I find it incredibly condescending as I've done research on this. I wish it was common knowledge so preemie parents wouldn't have to explain themselves so often!

My research has shown to me that just being born prematurely is a major factor for disability. The brain is nor formed fully. The environment inside mother's womb helps to facilitate complete brain formation - this does not happen the way it should when baby is born prematurely. It is my hope that over time the premature person's brain can form or build pathways to become similar in function to a full-term person's brain. I have not seen research on this - yet hear it said, so if someone has a study on this, please point me in its direction.

I came across this link, of interest: http://www.prematurity.org/research/helen-walters.html

I thought I'd compare myself, born at 30 weeks in 1978. (I'll only concentrate on the points that I can make a connection)

I'll start with some background. I was born at 30 weeks, in November 1978 after my mother's pre-term labor/pPROM. I weighed 3 lbs. 1 oz., just over 1500 grams which takes me out of the very low birth weight category. My daughter weighed 2 lbs. 15 1/2 oz. at birth, just under 1500 grams. I spent 9 weeks in the NICU at St. Elizabeth's hospital in Boston, 7 of those weeks were spent on a ventilator. I had several 'events' requiring full cardio-pulmonary resuscitation.

b) In girls, the cognitive learning style is often visual-spacial* instead of auditory^.

*If you use the visual style, you prefer using images, pictures, colors, and maps to organize information and communicate with others. You can easily visualize objects, plans and outcomes in your mind’s eye. You also have a good spatial sense, which gives you a good sense of direction. You can easily find your way around using maps, and you rarely get lost. When you walk out of an elevator, you instinctively know which way to turn.

The whiteboard is a best friend (or would be if you had access to one). You love drawing, scribbling and doodling, especially with colors. You typically have a good dress sense and color balance (although not always!).

^If you use the aural style, you like to work with sound and music. You have a good sense of pitch and rhythm. You typically can sing, play a musical instrument, or identify the sounds of different instruments. Certain music invokes strong emotions. You notice the music playing in the background of movies, TV shows and other media. You often find yourself humming or tapping a song or jingle, or a theme or jingle pops into your head without prompting.

This is NOT me. I am very much an auditory learner. I was always singing and dancing when younger. I can actually recall being 4 years old and random family members coming up to me asking me if I would dance and sign for them again. I loved to dance and sing.

I was heavily involved in music in middle school and high school. I played 5 different instruments well and another 3 'passably'. I majored in music education in college for one year, dropped out due to financing (which now fuels my quest for more financial security), and eventually returned part time to get a degree in computer programming.

My friend Megan, who reads this blog, can attest to my always whistling while in school.

c) Many girls are tomboys or have strong tendencies toward male-oriented, strenuous, athletic behaviors.

Um, again, not me. I did try out for the girls softball team when I was a freshman in high school though. Didn't make it, ended up sharing the role of 'team manager'. It was quite funny. My mom had me in dance when I was very young (4/5) and I wasn't 'great'. I goofed off a lot in class and didn't follow direction very well. They do have some really cute pictures of me in my little costumes!

I am a registered skydiver though. It is a very male-oriented sport. I found the feeling of free fall (being in the air after exiting the aircraft) to be very peaceful. I never looked at it as 'a rush'. As a matter of fact the most 'rush' inducing part of a skydive is landing, and I hate landing. I was so bad at landing I didn't stand up a landing until after I had 100 skydives!

And trust me, skydiving does not require strenuous activity. I know of many over weight skydivers who pay someone to pack their 'chute for them - which is the 'strenuous' part of skydiving, in my opinion.


d) Hyperactivity is usually goal-directed. Children are often busy doing constructive things; one girl wove 500 hot pads.

I don't think I'm hyperactive but I am very goal oriented. I do cross stitching and scrapbooking but I have never done marathon sessions. Its very rare for me to become so focused on a task as to get lots of it done in one session.

e) The girls in the sample tended to be unusually strong.

Hahahaha. Can I laugh? Strong? I was fat from 9 years old on, strong wasn't even in my vocabulary.

f) Many have temperament traits that were apparent from the first day of birth: irritable and cranky, stubborn, with a mind of their own; demanding and bossy; little or no self-motivation; self-centered; have frequent temper tantrums.

I am stubborn. But I don't believe I'm irritable & cranky. My parents told me I was the most cranky baby until 8 months old. I imagine it was due to reflux, which wasn't treated in infants then. I definitely have a mind of my own - dare anyone to get in my way when I'm on a 'mission'. Demanding & bossy, I think I can be when I get upset. Little or no self-motivation - definitely not. Self-centered? I think everyone has a tendency toward this. I don't believe I am more self-centered than anyone else. Frequent temper tantrums? I asked my mom. She said I didn't have many that she recalls. But she did mention I frequently got what I wanted. I think she used the words spoiled brat in our conversation at some point. *wink*

g) Difficulty in learning to read write and spell.

Actually, I excelled at this. I had read the entire Anne of Green Gables series in 3rd grade. I was always top of the reading/spelling SRA sets in middle school. Writing has never been a problem. I think I communicate well through writing, and enjoy it too - as is evident by this blog.

h) Visual-motor-perceptual problems interfere with processing written symbols of language; writing tends to range from sloppy to dysgraphic; problems with gross motor development.

Hmm, I don't think this was a problem for me either. I recall writing my name, in cursive shortly before we moved out of our apartment in Boston (I was 8 when we moved). I did have some major work done on my cursive when I was in 4th grade. My teacher, Mrs. Hutchinson, held a contest for the most improved cursive. It was between me and Karen Orlandi. I won! My handwriting is very nice now.

i) Girls tend to respond to boy-type visual-spacial and redundancy procedures if there are reading, writing, or spelling problems.

Not in my case, but then again I never had trouble with those things.

j) Girls love horses and dogs in particular, and all animals in general; they often work hard taking care of their animals.

I took horse back riding when I was about 8 one summer. I was very scared of the big horses and would only ride the Shetland pony. He was old and didn't move very fast at all - that made me happy.

I love cats, never been a dog person. I volunteer, pretty actively, with Siamese rescue and love every minute of it. I think my love of cats is more from my parents though - they had many siamese and I loved them.

k) Difficulty delaying need satisfaction; all demands must be met now, this moment.

Don't think this has ever been a problem for me. Yes, I like things right now but doesn't everyone?

l) Many have sleep cycle disturbances: light sleepers, hard sleepers; wake up crabby; stay up late at night; hard to get to bed.

Nope, not a problem. My dad is a light sleeper. My mom is a 'dead' sleeper. I sleep very well. Megan can chime in here too. We'd have sleep-overs when I was younger and I was always the first one asleep!

m) Many girls are hypochondriacs; a small scratch becomes a major event.

Nope, not a problem for me. Just ask my husband how long it took me to finally see someone about my heart problems (non-preemie related). I really don't like being the center of attention.

n) Often they do not respond to cultural systems of discipline. Yelling, spanking, take away, and anger in voice, makes them worse.

My dad was very 'conventional' in discipline. It was always physical. Worked for my brother and I, I guess. It certainly didn't make us 'worse'.

o) Difficulties with peers. Often have only one friend; complain no one likes them.

This was me to a 'T'. I had a lot of difficulty making friends. When I lived in Boston and attended a parochial school I did very well with friends. I had many and was happy. When we moved to Foxboro I had no friends, for a long time. The friends I did have didn't treat me very well and I was miserable. I think I was in 8th grade before I stopped asking my parents why we moved. I really missed the feeling of having friends. In 8th grade I started getting heavily into my music and started placing in state competitions, thusly gaining a lot of self confidence. I didn't have too much trouble with friends after that happened.

I was in a lot of psycho-therapy as a middle schooler because of the problems I had with friends. Actually we were in family therapy as my mother has bi-polar disorder and my parents were on the verge of getting a divorce (for the 8th or 10th time...).

p) Many lack social finesse, even in young adulthood. (Shy and tend to be blunt).

Hmm. I think I do ok in that aspect. When I was younger I definitely didn't have social 'finesse'. I actually remember thinking to myself, when something happens that should hurt you (like falling down or getting hit with a ball in gym), you should laugh. So when it happened in middle school, during gym, when I was hit in the head with a basketball, instead of saying 'ouch' or something to that affect, I started laughing, like crazy. Yes, they looked at me weird.

q) They may talk as early as fullterm children, but have more speech defects.

My mom never said I had speech problems. I never recall having any either.

r) They have a higher incidence of sensory abnormalities (poor gait, visual problems, oversensitive to noise, etc.) and other nervous system problems.

Yes. I just saw a picture of me, with my cousins, when I was my daughters age - 13 months. (actually, Arianna is 14 months today!). I already had a severe turn in my right eye then. I got glasses at 4, had them until when my turn resolved. I just got a new pair this week to help with nearsightedness. I can still make my eye turn if I try real hard.

Took a depth perception test with this new doctor too, which I had never had before. I have almost NO depth perception without glasses. Its no wonder I had such a hard time landing my parachute! Sure I'll blame it on that! *wink*

In reality, women parachuter's have a much harder time with landing than their male counterparts. I think it may be due to the upper body strength needed to pull down the toggles causing the speed to slow. Genetically males have more upper body strength at a baseline than women.

s) They are often less self-reliant, depending on adults more than fullterm children

Although this may have been the case when I was younger, as a teenager I was very self-reliant. Due to my relationship with my father as a teenager I was frequently living with friends and used money from the part-time jobs I had to buy myself food etc.

I moved out and into my own apartment at 19 and haven't look back.

t) Many of the children are controlling and oppositional.

Hmm... Nope, I was too shy to take control of a situation and frequently did what everyone else did just to be included. Far from oppositional.



I thought this was very interesting, over all. Although I may not fit the mold, that doesn't mean that this particular 'study' is not valid. Just pointing out that this particular study doesn't seem to apply to me, in almost any way.

Happy Mother's Day to all the moms out there. This mother's day is special for me as Arianna was in the PICU at the children's hopsital, just one week after coming home from the NICU, with para-influenza, this time last year.