Wednesday, November 18, 2009

November is Prematurity Awareness Month

40 weeks. It sounds like a lot of time. What could you do in 40 weeks? Most people probably take a vacation every 40 weeks or so, or at least hop a weekend getaway. You could get through 2 semester of college. Oh, yeah, you could gestate a baby.

Or not.

At one time, those 40 weeks werent just a recommendation, they were the standard. Babies born before 36 weeks were almost always lost. And then, with medical advancement, babies born at 34 weeks were savable. And then 32 weeks. 30 weeks. 28 weeks. 24 weeks. Now, we can save some babies- although very few- at as early as 21 weeks. Given, we have no idea how their lives will turn out, but literally "half baked" babies can be given some sort of chance with invasive and round the clock care. And if you two thirds of the way done, most people expect that your baby has a fighting chance.

Do you know what the average gestational time is now? 36 weeks and change, almost 37 weeks. 3 weeks shy of what we used to consider "full term" is now the norm, with scheduled c-sections and early inductions. While there are valid reasons for both these procedures, a parent's schedule isnt, in my opinion, in there... But I digress...

Babies born prior to 36 weeks are preemies. And we all know at least one. I was one, born around the 30 week mark. And, no joke, I went home from the hospital soon after I was born, with a nice case of jaundice and instructions to "put the baby in the window that gets the best sun". As to the rest of it, it was a crap shoot. I looked healthy so I went home. No feeding tubes. No breathing machine. Thank God. The same is true for J, who was a preemie born a few decades ago and is one of the twins' godmothers. She was a preemie who was sent home with the luck of the draw attitude that doctors had when preemies looked good. We hope your baby lives. Good luck.

But we also know the other babies. The ones who lived in NICUs for months. Bobby and Maya were lucky. Their NICU roller coaster went up and up and up with only minor downs. They had minimal treatments and were basically waiting to learn to eat on their own completely and grow. But I see babies every day who arent so lucky. Babies like Maya's boyfriend, an adorable 35 weeker who cant eat without vomiting. Or the 27 week twins of a new NICU friend, who cant stomach fortifier and arent gaining any weight and are the size of Maya at birth, even though they are 6+ weeks old now. (They were 1lb 5oz when they were born, so thankfully, they've put on a pound in those 6 weeks). Then there are the babies that were born recently and rushed to our NICU. 24 week twins whose parents stand vigil by their bedside as monitors go off and off and off, and doctors tell them, grimly, that the prognosis isnt great. That yes, we CAN save SOME 24 weekers but it all depends on what is going on... That, at some point, you have to make the choice of what is life saving and what is simply putting off death. That the first big decision you have to make as a parent is where to let your child have a life that is living or a life that holds no hope of ever really waking up.

And we cannot forget the babies who try so hard to make it in a world that just isnt ready for them. Babies like Georgina and Benjamin, born at the cusp of that horrible V word, viability... Babies that were so loved and tried for and hoped for... Babies for whom their mothers poured over the stories of other micropreemies who survived and thrived... Babies who died while their twin lived, a constant reminder of a life cut terribly short and forever put on hold.

The babies like Nicholas and Sophia and Alexander and George and Gregory and the countless others, born too early for medical assistance. Babies who took a breath or two, if a breath at all, their lives marked, at best, in nanoseconds- but who spent a blessed lifetime in the womb.

Who can we blame... Certainly when a mother engages is risky behavior like smoking or drinking or drugs, it is easy to point the finger and say "YOU did this to your baby". When a mother who is advised to take it easy does everything but, we may find it hard to find sympathy for her as we pray that her child doesnt suffer for her lack of parenting. But what about the other side of the coin? The mother who did everything to get those precious 40 weeks and failed? The mother who holds guilt like some people hold a live child? There is no one to blame, but that doesnt stop us from blaming ourselves.

We didnt ask to be those mothers. The ones who gave it their best only to feel that their best wasnt good enough. The ones who spent hours, days, weeks, or months on bedrest, praying that each day would be a day that passed them by and brought them one step closer to a full term delivery. The mothers that begged their doctors for an fFN test to predict whether or not their labors would occur in 2 weeks so that they could have some peace of mind or at least try to prepare themselves for the inevitable. The mothers who closed their eyes and took those 2 shots of steroids, in the hopes that they would be the miracle drug that would inflate their child's lungs and give them the hope of a breath outside the womb. We didnt ask to be the mothers that no other mother dreams to be, the object of sympathy. The woman in need of more support than she could have ever imagined and more prayers that she ever would have thought possible. The woman who holds a child in one hand and prays that their tiny, red-tinged baby will have not just a shot at life, but a shot at living.

We didnt ask for our babies to struggle every day of their early lives with needles and OG tubes or NG tubes and CPAPs or ventilators. Babies whose lives were watched round the clock. Whose medical care costs upwards of hundreds of thousands- and even a million- dollars.

What is worse is that we cant stop prematurity. We cant cure it as though it is a flu. Those of us who have done everything possible to prevent it and lost the battle know that for a fact. It is a plague. All we can do is watch for it and watch for it in others and hope beyond hope that our vigilance and our prayers can make the difference between losing a child and watching one grow to fruition, 40 weeks or not. We can educate ourselves and others. We can talk to our doctors about predictors, like the fFN, and why they may or may not work for us. We can insist on betamethasone injections, if a preterm birth seems inevitable. We can talk to our doctors about cesarean deliveries when our babies are tiny so that they can avoid the trauma of a vaginal birth and possibly a dangerous brain bleed. We can become advocate for ourselves and, more importantly, for our unborn and prematurely born babies. We can ask the hard questions that we dont want to know the answers to, and we can make the hard decisions that we pray no parent ever has to make.

We can and we must. Because if we dont, then no one else will.

This month, call your local NICU. Ask what YOU can do to make the life of a preemie parent easier. Maybe it is knit a hat (I cant tell you how deficient our NICU is on micropreemie hats). Maybe it is make a meal and bring out for a family sitting vigil at the bedside of their struggling baby. Maybe it is simply pray. But most NICUs have groups that support parents and they NEED support- not just from NICU parents but from all of us. It takes a village- be a part of that and know that you made a difference.

And talk. Talk about prematurity. Talk about it with your pregnant family and friends. Dont be afraid to be the "nut" that brings up the scenarios people dont want to think about. They need to know. They need to be empowered for advocacy, and to know that there is someone they can talk to if the shit hits the fan and they become that preemie parent. Talk. Talk. Talk.

It's the one thing we can do. The one thing we can all do.


Jenni said...

Oh Michelle, see you made me call the NICU and ask them about a family and cooking. (I can't knit) and there are several families. The nurses suggested a big pan of spagetti or something like that for them all to share. I will be doing that. Thank you for the advice. I didn't have a premie but just a suggestion for bobby, take a blanket, twin size or so and roll it up from corner to corner diagonally, then bend it into a U shape. lay him in that so he is in a papposse (sp) sort of. That made a world of difference for Jessica. She was not sleeping well and the first time she was in the hospital with a fever spike, the nurse came in and did that for us. It was a miracle to me. lol. I am still praying daily for you.

K said...

thanks for bringing this month to my attention. I hope Maya is coming home very very soon!

Anonymous said...

I love this. I stumbled upon your blog a few weeks ago and have been 'keeping up' with you family's progress.I have been praying for your little Bobby and Maya, and for you and your husband as well. My only child was a 29 weeker and was in NICU for 6 weeks 4 days. He just turned 3 a couple of weeks ago. I only blinked once, I swear:-) The moments just fly right by.
You probably get this alot, but you really should consider writing a book.
Blessings to you and your beautiful family.

Bluebird said...

Absolutely perfect post. Brought tears to my eyes.

Stace said...

Beautifully written, Michelle. Your words touched me deeply and you of all people know why. Thank you.

Jen said...

What a poignant brought tears to my eyes!

Your words are exactly what my heart feels right now...

KristieMcNealy said...

You said all of that so beautifully. Thank you for helping to spread the word.

I'm waiting on pins and needles to see how the carseat test goes for Maya!

Catherine W said...

What a fantastic post Michele.

My heart goes out to the parents with their 24 week twins newly arrived in the NICU. It is not an easy road.

Those mothers 'who hold guilt like some people whole a live child', that phrase sent a shiver down my spine. I'll always, always wonder if I could have prevented my twins being born so early.

I do feel that, if prematurity was a topic more out in the open and discussed (by the world at large and by health professionals), I could have been a better advocate for my daughters. Or at least been more prepared for the sights that lay before me in those months in hospital.

Thank you for writing this. xo

Glenda said...

This post is very moving! It is all so true and you would know. You have lived the role! Thank you for educating others!

Baby Smiling In Back Seat said...

What a fabulous post, Michele.

Anonymous said...

Michele, this is a perfect post and so true. Thank you for sharing this post. *hugs*