Hand to Hold's Official Blog: Written by Parents for Parents

Celebrating Every Preemie Milestone

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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Michelle Hensel About Michelle Hensel

Michelle Hensel (TX) is the mother to three children. Her oldest daughter was born full-term and she unexpectedly delivered her twins at just 23 weeks 5 days, with each weighing 1 lb. 2 oz. and 1 lb. 8 oz. They spent 133 days in the NICU. Although they still face challenges due to their prematurity, they are now active, healthy toddlers. Michelle chronicles her family's journey with former micro-preemie twins and their big sister on her personal blog.

Comments

  1. Our little guy was born at 28 weeks and came home with an NG tube too! I didn’t think he’d ever eat normally. The first time he ate a chicken nugget (around 2 years old), I took pictures and posted them on Facebook 🙂

  2. Our twin girls were born at 24w4d. They were numbers 4&5 for us. Our other babies being huge term or even post-term babies ranging 9lb5oz to 10lb14oz. We were so scared for our little ones who weighed in at 1lb4oz and 1lb5oz, but they amazed everyone with their tenacity and how amazing they have done. They are 13 months now, almost 10 months adjusted. This post about milestones really touched me because I feel like the other kids just reached milestones so effortlessly without thinking about it. This time around, it all seems so calculated. It’s hard not to analyze every little thing. And it’s so different seeing babies that were born term and are out and about and trying not to do the mental comparisons. The isolation is hard too. I refer to them as my “secret” babies because so few people have actually seen them outside of pictures. Can’t wait for this spring when they will make their “debut” around their 1 year adjusted birthday.
    I had a peek over at your blog, and it’s wonderful to see how well your two are doing now. I was so scared while we were in the hospital about what kind of future our girls would face, but it’s lovely to see someone just a little ahead of us. Thank God for little miracles!
    Thanks for sharing your story.
    ~Jenny~

    • Wow, you did have some big babies! I can’t imagine how hard it was to have 3 kids at home with twins in the NICU. I just had one at home and two in the NICU, and that was really hard. Isolation is so hard. It feels so “isolating”, imagine that! And, yes, it is so hard to see what comes so easily for other kids while your kids are struggling to do those same things months behind kids their age. It has become easier over time. Hopefully, it will become easier for you too. I love your term “secret babies.” I told our friends, “See, they really do exist” when we were finally out of isolation. It’s like the M&M commercial with Santa with both being surprised that the other really does exist. I think that is one more hard part about being a preemie parent – you have these amazing babies who you want to show off to the world but you can’t even invite friends over. That’s why it is so wonderful to have this blog and support network online.

  3. Melissa Ayala says:

    I am so happy to hear stories about other 23 week twins that are thriving. I had my twins at 23 weeks and 4 days. My twins weighed 1 lb 4 oz each, my son survived, unfortunately my daughter did not. I was told babies so young with a collapsed lung don’t make it out of the NICU, reading your story makes me wonder why I was told this, although I have questioned this since the day we had to let her go, which was about 15 months ago. I am truly happy for you and your babies, and happy to see more micro-preemie’s beat the odds. We also never take our son’s accomplishments for granted, every mile-stone is a miracle. Thank you for sharing your story.

    • Melissa, I am so sorry for your loss. I think each baby is different. While Camdyn (my daughter) did deal with collapsed lungs multiple times, she was doing well overall (for a micro-preemie). I think the neo-natologists have a really hard job of making decisions that are best for each patient considering the quality of life and long-term effects for these precious babies. As preemie parents, I think we do celebrate each little thing they do even more.

  4. My twins were 28 weeks. They had a very rough start before that. I was diagnosed with TTTS at 19 weeks. It’s hard for me to see others with kids born after my boys doing things that mine haven’t even started doing. Sometimes I forget that they are gifts from God and he makes all babies special! With each milestone they surpass, I thank the great God for giving me my miracle babies!!

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