Premature Babies: What You Don’t See

In honor of upcoming World Prematurity Day on Monday, I sent out the following tweet:

This is Charlie. She was born 10 hours into her 26th week of gestation at 1 lbs 11 oz (790g). #WorldPrematurityDay pic.twitter.com/2r0GE5tiQR

— Rebecca Wood (@woodra) November 14, 2014

It was favorited and retweeted among those who celebrate World Prematurity Day. A prematurity poster toddler of sorts.

You see the before and after pictures. Maybe you think that prematurity is no big deal. These babies seem to turn out fine.

But, these pictures are oversimplifications… only part of a story. What is missing from these posts is everything in between.

What you don’t see is the three months she spent in the NICU perilously clinging to life while enduring countless painful tests and procedures.

What you don’t see is the long demoralizing walk from the ER to pediatrics upon her readmission to the hospital for complications due to her early arrival.

What you don’t see are endless therapy sessions and appointments with specialists in which we hope for and ask from her things that are arduous.

What you don’t see is how hard she worked for every little bit of progress.

What you don’t see is how, over two years later, prematurity continues to affect her life every single day.

What you don’t see are the babies who didn’t survive.

With all of the before and after pictures that are and will circulate in honor of World Prematurity Day, please keep in mind the things that you don’t see. Surviving premature birth is no small feat.

Sometimes It’s Ugly… But Not Always

Tomorrow is World Prematurity Day. Two years ago, I was not aware that it existed.

There is nothing that will erase the memories of the NICU and Charlie’s first year.

I will not forget the terror, powerlessness, heartbreak, fear, sadness, loneliness, anger, frustration, worry, and desperation that I felt (and sometimes still do).

I will not forget holding my baby down as I learned to thread an NG tube,  stroking her head during countless epo injections, and her helpless expression as she anticipated each monthly palivizumab injection.

I will not forget the long demoralizing walk from the ER to Pediatrics when Charlie was readmitted.

However, I will also remember the triumphs, victories, and great strides.

I will remember the time I spiked the bottle like a football when Charlie finished her entire 20 mL oral feed for the first time.

I will remember the look on the neonatalogist’s face when I burst into tears as he first mentioned Charlie’s NICU discharge plans.

I will remember the high five the pediatrician gave me when Charlie resumed gaining weight after a long and perplexing feeding strike.

I will remember the sound of the cheers Charlie’s dad and I let out when she learned to roll over on her own.

I will remember the proud grin on Charlie’s face the first time she stood independently.

I will remember the love, support, kindness, and selflessness of all the people who have worked to support us from the weeks prior to Charlie’s birth through the present.

Sometimes, preemie parenting life can be brutal and feel merciless.

But, it also possesses beauty and awesomeness beyond words.

Ultimately, I’m grateful for every second of it.

Mostly, because I know how close we came to never having any of it.

This morning, Charlie and I participated in a local 5K run/walk organized to raise money for the March of Dimes. Charlie was very enthusiastic.