NICU Follow-Up and a Little Drummer Boy

Yesterday, Jax had his second NICU follow-up appointment. Any baby who spends time in the Neonatal Intensive Care Unit is followed closely for any signs of delays or concerns. The follow-up appointments are done in a clinic at the hospital, not in the actual NICU. Usually, there is a 6 month, 12 month, and 2 year follow-up, depending on the hospital and the kid.

nicu follow up clinic

Jax’s first NICU-follow-up appointment was when he was 10 months old (6 adjusted). He was right on track at that appointment. So, since I haven’t done a “nuts and bolts” type of update lately, here are some highlights:

  • Actual Age: 16 months, 20 days; Adjusted age: 12 months, 21 days
  • Weight: 27 pounds, 5 ounces (75% on the standard growth chart!)
  • Height: 32 3/4 inches (75% on the standards growth chart!)
  • Head circumference: 18 5/8 inches (35% on the standard growth chart)

They did the Bayley Scales of Infant Development assessment based on Jax’s adjusted age of 12 months and he nailed it! Basically, Jax is smart. 🙂 I’m so proud of him!

  • Cognitive Score = 15 months
  • Gross Motor Skills = 11 months
  • Fine Motor Skills = 15 months
  • Expressive Language = 12 months
  • Receptive Language = 11 months

While he is a little bit behind in some areas, there is not a big cause of concern because he’s so plugged in with therapy and services. We will continue with physical therapy to help with his gross motor skills. We’ve also added a speech therapist to his Early Intervention team to help with his language development.

Overall, the doctors were amazed at Jax’s progress for a 23 weeker! I’m pretty amazed, too.

I read a quote yesterday that said “Never remove joy from a joyous occasion.” That was fitting for me. Sometimes I catch myself waiting for the other shoe to drop.

By writing that I’ll probably get a lot of people commenting about how I should be thankful and glad that Jax is doing great (and I am), or how we should feel lucky that he’s even alive (and we are), or that so many other people have it so much worse (and we know that and support everyone, no matter where they are in their journey).

But why were we the lucky ones? I mean, how can Jax be doing so well for such a small guy at birth? When will we use up all of our luck? What is in store for his future?

These are all things that I think many parents feel at one point or another as their kids grow and learn. I think for me, it’s just my way of never taking a healthy child for granted. Sometimes, though, I need to take a deep breath and remind my self to stop worrying about the future and celebrate the here and now. 

Like Jax does.

Check out this video. My favorite part is when Jax points to me almost as to say “Hey, mama – it’s fine. Yeah, I know!”

Yeah, baby. I know. We’re more than just fine…

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

15 thoughts on “NICU Follow-Up and a Little Drummer Boy”

  1. Wow!! Go Jax! He is so incredible! And way to go mama for giving him every opportunity to do as well as he’s doing! I totally get what you mean about wondering when we will use up all of our luck. This is a huge source of anxiety for me lately. It’s definitely tough to relearn how to live in the present and enjoy what IS but these little fighters are great role models for that! And to anyone who says be grateful because others have it worse, I thought this image captures it best:


    1. Thanks! And thanks for that image – it is perfect. Now, I just have to work on staying in the present. Jax is such a good teacher for that! Sometimes, I feel guilty that Jax is doing so well – isn’t that strange?!


  2. Isabella loved the video. Her and jax speak the same language. (they sound very similar) And she answered him also to whatever he was saying. (in the same language of course)


  3. I totally feel the “waiting for the other shoe to drop” … it makes it so difficult to just be happy with the wonderful development that is happening. I feel like I am forever anxious “something” else is going to happen since they drilled it into your brain at the hospital that they “could” have x, y and z problems. And all we want is for them to survive and THRIVE! Thank goodness they are thriving and lets keep on keeping the joy in all of the joyous occasions!


    1. I know – the “what ifs” are ingrained in us during the NICU stay, it’s so hard to let go. All I have to do is see Jax’s smile and I know it’s all good! 🙂


  4. God works in mysterious ways. He knows what fabulous parents you two are so take that deep breath. Enjoy your son….all is good. Love you all so much. Merry Christmas. See you next year.


  5. Congrats on such outstanding assessment scores! Jax sounds like he is right on track due to hardwork, diligence, and a bright little mind. I can definitely relate to your fears and concerns. Loving and raising a micropreemie is the greatest lesson in acceptance, patience, and surrender that I have ever had!


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