Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, November 7, 2010

A Public Service Announcement

November is Prematurity Awareness Month.

I think the main thing we need to be aware of about prematurity is that it sucks.

It really sucks.

Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like "smiled for the first time" you make note of milestones like "weaned off ventilator." You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn't even know existed when you filling out your baby registry. People tell you well intentioned, yet terribly stupid things, like "things happen for a reason," "God doesn't give you more than you can bear," "at least you never got stretch marks since the baby was born so early" or "you're lucky you get to sleep at night since the baby is in the hospital."

You wake up day after day wondering if this is the last day you will see your child.

Prematurity financially devastates families. Contrary to popular belief, there is no insurance fairy who pays the tens of thousands of dollars of co-pays or the endless "uncovered" things like speech therapy or adaptive equipment. Even "good" insurance isn't "good enough" to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.

Prematurity is isolating, physically and emotionally. Because of the baby's fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.

Prematurity devastates families emotionally (see all of the above).

So what can we all do to help make this suck less?

Well, you can donate money to various charities in the hope that some of the research they fund might end prematurity. Or you can do something a bit closer to home and more personal. Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt's tiny "wee caps" and many who have been warmed by one of my mom's blankets and even though my blankets are far from "perfect" they are made with love. Some people make isolette covers, some people donate disposable cameras for parents to leave at the baby's bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the parents and nurses (they get hungry too). Not all parents in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU.

Even if you can't prevent premature births, you can make prematurity suck less for the parents and the babies who are in the NICU right in your hometown.

So this November, let's see if we can all make prematurity suck less.

21 comments:

Noelle said...

This was a perfect post. Thank you. And it is so isolating. I am feeling very isolated right now.

Laraf123 said...

Thank you for sharing these ideas. Certainly I can do some of them. (Never thought of gas gift cards or disp. cameras...)

Robin Elizabeth said...

Yup,it sucks. And the ride on the SS Prematurity never ends.

Sarah said...

Amen...

and linking.

Sarah M. said...

fabulous post. I'm linking to it.

Anonymous said...

Hi Anne,

You described it so nicely!!!Your posts make me either smile or cry. My baby was not preemie baby but she was born with lots medical issues and was very small so last four years and four months we have been isolated and feel very sad and depressed. Like I said even Eliza had to go through a lot of physical stress in her early life but I am so glad that she is so intelligent! You are an amazing mom!

Kathy.

Anonymous said...

I could not have said this any better! I think this is the best thing I have read since this whole journey started 10 months ago!

Alison said...

Can I copy and paste and send out? I can leave your name as author in or out- whatever you prefer or just call you Anne, mom of Eliza Grace. You just hit it out of the park- it deserves to be passed on b/c not everyone know that prematurity just sucks!
let me know
Alison

Anne, Eliza Grace's mom said...

Alison, of course you can share my post.

Alison said...

Thanks Anne!!

Preemie Mami said...

Congrats! You have won the Stylish Blog Award!! Check it out here: http://preemiesandme.blogspot.com/2010/11/i-won-stylish-blogger-award.html

Preemie Mami

BusyLizzyMom said...

Very well said. 6 years later and it still sucks and continues to haunt our family. If it is okay with you I would like to borrow your post and link it on our blog?
Thank you for your bravery and honesty.

Anne, Eliza Grace's mom said...

Of course you can post this to your blog! Did you ever think you'd still be thinking about prematurity 6 years later? So much for the catching up by 2 mantra (which I am so thankful no one in our NICU ever spouted).

D said...

We endured the 'catching up by 2' mantra, partly because Joshua was a twin (and therefore a 'normal' yardstick existed by default) and partly because they didn't know what else to tell us. He's always been a mystery that way. That deadline seemed so far away in his tiny, early days, but the added fear and sense of failure it caused as their 2nd birthday crept closer and closer was another bold-type, all-caps passenger to add to the the "SUCKS" manifest of the 'SS Prematurity'. Seven years later and still playing catch-up. . . Your post is wonderful.

D said...
This comment has been removed by the author.
liz.mccarthy said...

SOOO well said! Wish I wrote it myself!

TherExtras said...

An excellent and righteously emotional post, Anne. Too often (perhaps the majority) the parents of babies born too early suffer needlessly from poor advice and support from 'professionals'. More funding can also better train physicians, nurses and therapists to interact more effectively on an emotional basis.

More points I wish to make: for some babies, the choice is between between being born early and life. For some babies, the choice is between being born early and the life of the mother.

Preventing premature birth is part of the funding need, along with giving better care to the babies and parents after a necessarily early birth.

Thank you for this post. Barbara

Leslie said...

Hi, I think we have communicated on Inspire. I am thinking of starting a blog and stopped here for inspiration. Your post about prematurity sucking, really bad- had me laughing out loud! thank you! My name on inspire is peace_nhope. Thanks again for making me feel less isolated :)

Leslie said...
This comment has been removed by the author.
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Jen said...

I just found your blog and have been reading every post. Thank you for bringing this to light. I am wondering, do I just contact the NICU to do our parts? I think Eliza Grace is a beautiful girl.