Micah’s Journey with Craniosynostosis: We’re on the other side!
It’s been several months since I updated my blog with Micah’s progress. (Check out my previous 4 posts to start from the beginning.) I have been diligent with keeping our friends and prayer warriors in the loop on Facebook, but there is a whole group of concerned parents who are facing a cranio diagnosis who will stumble across my blog and could possibly be encouraged by Micah’s amazing progress, so here it goes!
On February 26th, we brought our sweet almost 4 month old in to have a major reconstructive surgery called CVR (cranial vault reconstruction) that would allow his brain room to grow properly as he ages. It was one of the hardest days of my life, though we felt the prayers of hundreds of people that morning. We handed him over to the surgeons with a peace that he would be okay, and that this was just something that Micah was going to have to go through. Soon, we would all be on the other side.
Halfway through the surgery, we were called back with a progress report: Micah’s neurosurgeon, Dr. Wellons, had discovered that the dura (protective lining) of Micah’s brain near the fused area had started to erode a bit and some blood vessels were damaged. The inside of his skull had also begun wearing away near his sagittal suture. Though Micah required a transfusion of Nate’s blood at this point because he lost quite a bit, neither of these issues have lasting consequences. For us, Dr. Wellons’ findings only solidified for us that we had made the right decision to have his operation when we did rather than waiting. The rest of the 2 1/2 hour surgery went without incident, and before we knew it, Micah was in recovery!
We were able to go back and see him almost immediately. The sight of his sweet angelic face peeking out among a host of bandages and wires and sensors is one that will be burned into my memory for all of time. It was an incredible moment to see our son, safe and sound, ready to begin recovering to be a normal kid.
The next few days were very hard, as any cranio parent will agree: Your child becomes so swollen he no longer looks like himself. He isn’t eating much, and sometimes when he does eat, he vomits it back up. Thankfully, Micah didn’t do much of that. Despite an incredibly involved surgery (his whole skull was taken out, reshaped, and put back in with dissolving stitches, 2 screws and some wire), Micah never seemed to be in pain other than when they had to take blood frequently. I had to leave the room when they did this, because it was heartbreaking. It’s tough to get blood out of a baby whose veins area shot from the previous sticks. After he left the hospital, I counted close to 20 puncture marks. He still has a wound on his wrist and we are almost 4 months post op now.
Dr. Kelly, Micah’s plastic surgeon, is very thorough and takes a lot of extra precautions throughout the process to make sure that his patients do well and have the fewest amount of complications possible. One of those is that Nate and I couldn’t hold him until the drain in his head came out. It took a few days, but when I was able to hold him, it’s all I did for several hours. It was the most wonderful feeling in the world. By this point, Micah had only just been able to open his eyes a little bit, but he gave us a few smiles!
We were transferred to a regular room on Day 4 and were released from Vandy altogether on Day 5. Micah went right back to a pretty normal sleeping and eating pattern right away and other than some residual swelling that went down over the next couple of weeks and a visible (but incredible looking) incision, it was almost like nothing ever happened! His head is one of the most perfectly round, beautiful baby heads I’ve ever seen (and believe me, I notice heads these days). Ha!
Everyone told us before his surgery that we would be amazed at how well he would do and that it would be harder on us than him. Honestly, it almost got old hearing that, but it’s so true. I find myself saying the exact same thing to the other moms I’ve had the chance to encourage in the wake of all of this. Here are some photos of him taken just a few of weeks ago:
Feel free to skip this if you’re not dealing with craniosynostosis in your own family:
- Find a reputable surgeon, even if he’s not in your area. Ask to see photos and hear track records of post-op cranio kids. Ask to talk to other parents of cranio kids who’ve had that surgeon. I’ve seen some Frankenstein-looking incisions on other babies, and it breaks my heart because I know that there are internal stitches, surgeons who care about your child’s scar appearance, etc.
- Don’t assume that less invasive is better by default. After doing our research, we opted for the full CVR surgery rather than the less invasive endoscopic surgery. The latter type sounds better on the surface, but we didn’t like knowing that it carries a larger risk of needing future surgeries and also involves up to a year in a helmet. Our reasoning is that Micah’s going to be sedated anyway, he’s going to have a hospital stay anyway; why not get it DONE and let Micah get on with his life? It’s a very personal decision, though, so as long as you research and make an informed choice, it won’t be the wrong one!
- Know that the months or weeks leading up to your child’s surgery really are the hardest. Once it’s out of your control, it will be easier. Handing Micah over was hard, but freeing. The decisions were over. We could focus on recovery.
- It’s okay to cry. A lot. I went through the whole gamut of emotions from diagnosis (when Micah was only 2 days old) until the week of his surgery. I can say now that I even had some short periods of depression. It’s temporary, though, and when it seems like everything is dark and hopeless, there really IS an end to it and your child will do great!
We Were Not Alone
God laid this verse on my heart during my pregnancy with Micah. I didn’t know at the time just how much I would cling to it, but it became apparent after Micah’s cranio diagnosis:
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
God did and is going through this with us. Though we are on the other side now, there may be more to come. But, we weren’t alone yet, and we won’t be alone ever. Man, that’s awesome. I hope it encourages you, too!