Cranio-versary

I’ve shared a little bit about my little guy’s surgery before. But not much. It was hard to talk about for a long time. Because it was so scary, and the unknown was too much. But, now that we’re on the other side of it all, it’s so much easier to share.

My son was born with metopic craniosynostosis.

A mouthful, right?

There was a time I couldn’t even spell that word…until it became a huge part of our lives. So here, on the 3 year anniversary of my tiny baby boy’s surgery, I’d like to share a little about cranio with you.

According to the Mayo Clinic website, “Craniosynostosis (kray-nee-o-sin-os-TOE-sis) is a birth defect in which one or more of the joints between the bones of your baby’s skull close prematurely, before your baby’s brain is fully formed.” My little guy had metopic, which means that his skull was fused at his forehead.

According to Wikipedia, cranio occurs in 1 in 2000 births. So, it’s like we hit the most terrible sort of lottery.

We found out about his cranio when he was a few weeks old. We met with neurosurgeons and plastic surgeons, neurologists and geneticists. We spent countless hours at appointments, watching our tiny baby get poked and prodded.

We learned a little more about the surgery than we wanted to know…they were going to remove our sons skull, break it apart, and put it back together with dissolving plates and screws.

When they showed us a model of a skull, and started taking pieces off of it to explain the surgery, I felt sick. I couldn’t listen to the doctor anymore. I couldn’t look at my husband. I wanted to take my itty bitty boy and run as far away as I could. I wanted to shelter him from this horror that I couldn’t even begin to fathom him going through.

But, I didn’t. I knew it was best for him. I knew he was a fighter.

So, at 4 months old, we handed our barely 10lb baby over to a nurse, and waited for 4 hours while the doctors worked their magic. I was scared, there aren’t words to describe how I was feeling. I prayed and prayed and prayed some more. The hours dragged on as we waited.

But, then they called us back. The doctors were shaking hands and patting each other on the back. And smiling. And I knew it was okay. He did great. Perfect surgery. No complications.

So, we went to meet our new and improved little guy, with the perfectly shaped head. He looked so different, but I could tell it was going to get a lot better.

The 4 day recovery in the hospital was rough, but the nurses were amazing (We LOVE Peyton Manning Children’s Hospital) and our little guy was stronger than his parents. The swelling was scary, but our little man was still smiling at us. The days passed quickly, and we were ready to go home, our baby with the new noggin and his terrified parents.

So, on his 3 year Cranio-versary, I’d like to say to any parents getting ready to begin this roller coaster of a journey…you can do it. Your kiddo is so much stronger than you can imagine. Way stronger than you. And I never could have imagined how resilient kids are, and how quickly they recover and bounce right back. Hindsight is 20-20. So, I can tell you from experience. They can do this. You can do this. You’ll get through this.

Here are some photos from our experience. Some are slightly graphic and scary, but I just wanted to share this journey with you.

 

cranio1
Right before surgery.
cranio2
Right after surgery.
cranio3
Swelling that first day.
cranio4
Swelling the next night.
cranio5
3rd day.
cranio6
His first smile post-op.
cranio7
Giggling at Mommy.
cranio8
So happy to see again!
cranio9
Right after we got home.

 

cranio10
Healing up nicely.

If you or anyone you know is about to start this journey, please share this story with them. I always felt so much better reading success stories. It soothes a Momma’s soul to see that everything it going to be alright. Also, have them check out Cranio Care Bears, an amazing organization started by 2 cranio Momma’s that sends care packages to kiddos about to undergo cranio surgery. It’s such a sweet and thoughtful gift to receive, and a wonderful resource for parents.

2 Comments

  1. 4th Cranioversary

    June 20, 2016 at 8:16 am

    […] years ago today I handed my baby over to a team of surgeons. I shared the full story last year, but I don’t let this day go by without celebrating it. Without shouting to the world what an […]

  2. RARE

    February 28, 2017 at 8:48 am

    […] Day matter to me? Because I am the Momma to a baby with a rare disease! I’ve shared our Journey with Craniosynostosis many many times. But, I’ll keep sharing it to bring awareness for it, and other rare […]

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