The Secret Society of Prematurity

And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.
– Haruki Murakami

Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge.

Prematurity brings a new normal. Our NICU experiences can be overwhelmingly isolating. Terrifyingly lonely. Our world condenses into the 26×19 plastic Giraffe Omnibed that engulfs our tiny persons in sensors, wires and tubing.

For the lucky ones, the days that drag in to weeks that turn to months will slowly fade into a distant memory as our once tiny children grow up.

As I’ve continued to write, it’s become apparent that so many are touched by prematurity. It’s a secret society – a magical bond that exists among parents of preemies as we share our stories. To celebrate our little miracles.

I’ve long wanted to write this post, asking for your stories. Putting together a resource with the faces and names of our secret sorority sisters. But fellow preemie parent Melissa McMurchy did so first.

Stronger than we’ll ever be, we can learn a lot from our preemies. Breathe. One day at a time. One minute at a time.

McMurchy is behind the Two Miracles Benefit fundraiser, in support of the March of Dimes. (You think I’m going to ask for money here aren’t you? Come on, haven’t you been paying attention?)

She’s looking for your story. How have the tiniest children touched your life? She would like anyone that is a preemie, had a preemie, or knows a preemie to share their story. (And I won’t lie – I want to hear them too.)

If you would like to submit your story or know someone who has a tale to tell, please pass this on – like a preemie chain letter. You can send your story directly to McMurchy at or share with me at


Here is mine, in a nutshell:

It’s funny, I write this blog about this entire experience and I’m midway through my book. But as I sat down to write the brief version of my story, I had no idea where to begin.

November 2009:
Started a new job.

December 2009:
Found out I was pregnant (talk about being green on the job…)

January 2010:
Oh. My. God. We’re having triplets.

February 2010:
“There is no heartbeat.” Baby C has become the twins’ guardian angel.

March 2010:
“Congrats! You’re having a normal twin pregnancy.” Two boys!

April 2010:
Pre-term labor begins. 22 weeks is not considered viable. (I may or may not have had a complete tantrum-y meltdown, yelling at the doctors to figure out whatever voodoo they do to save my guys.) I move into the hospital. Thankfully, no nurses off the crazy lady in her sleep. (This may also have been because I got no sleep.)

May 28, 2010:
Search and Destroy are born (aka “the muppets”).
27 weeks gestation. (26 weeks if you believe the infertility treatment conception date. I can tell you the hour folks. Sex on schedule. Hot, huh?)

August 6, 2010:
Welcome home, boys. These were the longest 76 days of my life.

January 3, 2012:
Official diagnosis: No lasting effects of prematurity.

My husband and I struggled with infertility for years. I had two miscarriages before a pregnancy stuck (kind of). It seemed like I was the ONLY one who couldn’t get pregnant. I felt so alone.

I spent the first three months of my pregnancy arfing my brains out.

I spent the second three in the hospital.

What would have been my third trimester was spent in the NICU with its purple elephant-stenciled walls. It seemed like my guys were the only ones in closed isolettes, then the only ones who couldn’t hold oxygen saturation.

I wished I could talk to someone about the experience. And man – did I search the Internet. (Until finally, the doctors revoked my privileges to the Google …) Prematurity is a secret sorority none of us wanted to be a part of, but it truly changes your life forever. Our stories show we are not alone.

Breathe. We are forever changed within our new normal.


Filed under Angels, Health, Prematurity, Stories

2 Responses to The Secret Society of Prematurity

  1. Judi

    I sooo understand! My oldest was a 29-weeker. I had HELLP Syndrome, for which the only treatment is delivery. He was nearly lost in the first couple of weeks due to a staph infection that invaded his blood stream and spinal fluid. He had a couple of other birth defects that required surgery. The goal weight for coming home was always 5-pounds. He was over because every time he ate his O2 levels would drop. Without a doubt, the longest 7 weeks of my life. He’s now a mostely healthy 10-year old. He wears a contact because he was born with a cataract. He has some residual asthma, but it’s pretty well managed by medication. It does change you. I’ve found afterward that I’m much more laidback. Life seems so manageable after getting past my fears and his struggles.

  2. I know all to well what you went through, my former 23 weeker did 101 days in the NICU.

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