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 6, 2011

It's That Time of Year Again

Yes folks, it is Prematurity Awareness Month.

Annually I am compelled to post on this topic, to let folks know that prematurity sucks.

So tonight I started to write my blog post on this topic, rambling on about how babies need 40 weeks of baking (34, 35, 36, 37 weeks are not enough folks) and that wishing your baby comes "early" (even by only a few weeks) to fit your personal or social schedule is not only selfish, but just plain old stupid.

I started to write about the emotional, psychological and financial toll having a premature child takes on parents and their extended circle of friends and family.

I started to write about how annoying it is to hear people say it was "God's will" or I was "chosen" by some higher being for this special role in life.

And then I realized, that this all sounded oddly familiar.  Really familiar.

So I looked back to last year and guess what?  I already wrote almost the exact same post I had drafted for this year.  You can read last November's "A Public Service Announcement"  by going to the link or reading below:  

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.

And if you are still confused about why prematurity sucks, you can compare these photos.  While Eliza is beautiful to me in both photos, you tell me which way you would like your baby, and all babies, to begin their lives:

Eliza at 1 month after her due date (a/k/a a "newborn"):

Eliza as a 4 day old newborn:

Are you getting the idea?  I sure hope so.


Laraf123 said...

Liam was in the NICU a tiny fraction of the time Eliza spent there. But it still sucked. Even though I had been a mom for 2 years already, it took this experience to turn me into a mother lioness. Yes, it makes us strong, but we would trade the character building experience for healthy newborns, wouldn't we?

Thanks for posting the tips. I'm going to reach out to our NICU with some donations.

Barb said...

I love your passion and knowledge about these issues, and I love the way you are such a source of knowledge for the world at large and a source of support for families dealing with the challenges of prematurity. Thanks again for the wake up call.

BusyLizzyMom said...

I loved this post last year and still love it now. Now that I am pregnant and trying to keep this baby safe and free from all the ramifications of being premature I am now reminded I still can't let my guard down. I know all too well what can happen if this baby comes to early and every new pregnancy feeling has me in a panic that this too will be a premature baby ( happily I am winning the battle this time at 34 weeks). Instead of a happy stress free pregnancy I am having an isolated stressful one at home on bedrest.
My sister in law ex maternity Nurse told me when I got pregnant that 'maybe this time I won't get off so easy'. I don't think we got off too easy with a 25 weeker whose hurdles in life include CP, hearing impairment, ADD and a blossoming anxiety disorder, our daughter will always have struggles in life due to my inability to keep her safe in my womb.