Celebrating Every Preemie Milestone

January 30, 2013

When my first child rolled over for the first time, her daddy and I cheered.  We applauded her when she sat and later when she crawled.  We laughed when she said her first word, “duck”, and laughed more when she began calling everything “duck”.  Like all new parents, we thought everything she did was exceptional.  She was born at a healthy 7 lbs. 3 oz at 41 weeks.  The worry of not reaching milestones never crossed our minds.  She simply did because that’s what babies do.

Camdyn and Cade at 8 months old with big sister, Brenna

When she was two years old, we planned to have another baby.  We soon found out we were having twins!  For 23 weeks, my twin pregnancy progressed beautifully.  Until suddenly, it didn’t.  At 23 weeks, I checked into labor and delivery with unexplained pre-term labor.  They were able to keep me pregnant a few days longer; however, my twins were born at just 23 weeks 5 days weighing 1 lb. 2 oz and 1 lb. 8 oz.

In the NICU, our twins faced brain bleeds, collapsed lungs, a pneumothorax (air pocket in lungs), PDA ligations, infections, retinopathy of prematurity, and more.  We were told of all the possible outcomes for twins born this early.  According to the National Institute of Health, our daughter had a 32% chance of survival without profound neurodevelopmental impairment, and our son had a 54% chance of survival without profound neurodevelopmental impairment.  Those numbers still shock me.  For hours, I sat next to their isolettes praying to somehow be in that 32% and that 54%.  We were told they may have lasting effects of their extreme prematurity ranging from blindness, deafness, inability to breathe without a tracheostomy, inability to eat without a g-tube, mental impairments, etc.  The doctors were not trying to scare us; they were simply “preparing” us that these outcomes were possible.

Although sometimes it feels like yesterday, almost three years have passed since our days in the NICU. We watched in amazement as our twins rolled over, sat up, and crawled for the first time.  We cried when they took their first steps.  We had experienced all of these “firsts” with our older daughter, and while it was a delight to watch her do these things, it felt like witnessing tiny miracles each time our twins accomplished a new milestone.  Months of therapy were required to reach these goals.

Our hardest battle was learning to eat.  Both of our twins came home with ng-tubes.  My daughter took a painstakingly long time with each bottle but learned to eat enough after a few months to remove the tube.  My son had a g-tube placed at 9 months old.  It was a hard decision for us, but it was definitely the right one for him.

One afternoon I took my older daughter to the mall for a trip out of the house.  We were in isolation with the babies that first year, so we both needed an outing.  While grandma watched the babies, we took a trip to the mall.  I wrote this in my personal blog about our lunch in the food court that day:

“We got our Chick-fil-a nuggets and had a seat.  Just a few tables down, I couldn’t help but notice, a lady with a double stroller parked next to her table.  Her twins looked to be about 9 months old (actual – not the 9-month-olds who were really like 5-month-olds like ours).  She was feeding them from a little jar of baby food.  I watched in amazement at how their little mouths just flew open like the beaks of baby birds at the first sight of food, their mouths popping open at every spoonful so obligingly.  Their perfectly synchronized tango of eating continued, this one takes a bite, that one takes a bite, this one takes a bite, that one takes a bite, and so on and so on, until the food in the little jar vanished as if by magic.  Oh, so that is how it is supposed to work!”

My frustration level had hit a high, and I felt defeated seeing how easy it was for this mother to feed her children.  I understood how lucky we were that feeding challenges were our biggest concern considering all that could have happened, but still, I wanted my kids to eat.  Now, two years later, when I take all three of my kids to the mall and we have lunch in the food court, I am compelled to pause for a moment to count my blessings.  I cut up their chicken nuggets, pass them out, and they eat!

I never knew I should be thankful that my oldest daughter ate until I had kids who didn’t eat.  As parents who have watched their kids struggle to meet every milestone, we understand gratitude more than most.  It may seem like a little thing to a lot of parents, but eating a chicken nugget was a huge marker of success for us.  Preemie parents know to celebrate everything.  We are thankful for the big things and the little things and everything in between!

I would love to hear all about your children’s “little things” and “big things” and every success in between.


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