Super Hunter

A TinySuperhero’s story from a Super Mom’s perspective:

“My pregnancy wasn’t a typical pregnancy. At first they found something growing on my ovary, then around 20 weeks they told us our baby was measuring small and was in a low percentile. So, I started having doctor visits quite often. At one of the visits (around 30 weeks) during a stress test, he wasn’t really responding to anything, and when they checked my blood pressure, it was ridiculously high. My urine had protein in it, so they admitted me into the hospital. A few days later, at just the beginning of 31 weeks, our baby decided to make his entrance into the world! He was the tiniest little human I had ever seen. We named him Hunter! It took us about two weeks to finally be able to hold him. He was such a precious soul. And what a fighter! He was already trying to crawl away from the nurses in his isolette and holding his tiny head up at 2 weeks old. We knew at that point this kid would be strong!

I remember seeing him for the second time when all the good drugs wore off from my emergency c-section. I thought his head looked kind of funny on the left side but I just brushed it off as he was just so small he’d grow into whatever that was.

Towards the end of his stay in the NICU, I remember asking the nurses why his face was crooked and why it looked like he had a dent in his head. They told me it was probably just positional, but my new mom instincts just didn’t accept that answer. So, I googled “dent in babies head,” and this giant word I had never before seen in my life popped up! Craniosynostosis.

Not even a few hours later, the NICU nurse was calling us telling us that they thought it was that, and they wanted us back to talk about it. So basically I diagnosed him before even the doctors did. 

For those of you who don’t know, craniosynostosis is the premature fusion of his cranio sutures. Hunter had left coronal. So his left coronal suture was fused prematurely causing his skull to basically squish his brain.

On the day he was released from the NICU, we got bombarded with information about Craniosynostosis. We met with his new doctors that we would now spend a lot of time with over the next three years, and we were told about the two different surgeries he could have and that we had to make a decision with which route we wanted to go.

Being first time parents and having been through so much already, the thought of our tiny human having a surgery already was so overwhelming. We had many many follow up appointments. We made the decision to have CVR surgery (cranio vault reconstruction) because they told us that would fix the problem the best and would likely mean he’d only have one surgery. I spent the next few months with utter anxiety waiting for the surgery day to finally get here.

The day of the surgery was pretty hard. They took our smiling happy go lucky peanut back to pre-op and I lost it, but he was stronger than I was and rocked the surgery like a champ! We even ended up going home one day early because he did so well!

Since the surgery Hunter has made leaps and bounds. He’s still a little behind but we are working our hardest with him! He’s three now and still doesn’t speak. He has started to say words. I’m pretty sure we are up to over 20! And he’s finally starting to put two words together, but we still have quite a ways to go! He recently had testing done and we haven’t received those results yet, but I’m pretty optimistic. He’s a strong willed little boy on his own timeline and with lots of love and encouragement, he will reach all of his goals!” -Super Mom Cheryl

 

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