I had always known it was a boy - a mother's intuition, I guess. I had always wanted a little girl but when I suddenly found myself pregnant I would daydream about how life was going to change with a child around and for some reason every daydream I had was always about a little baby boy. I even had dreams at night about the baby and it never failed that it was never a little girl. Now, I can't imagine myself with anyone but my perfect little baby boy!
I delivered late at night on the 1st and the next day was filled with love, exhaustion, snuggling, exhaustion...you get my point.
We have since spent the last 9 weeks researching as much as we can to understand the cause, the treatment, and the usual outcomes. There are a few different surgical procedures that can be done to correct this. There is Cranial Vault Reconstruction (CVR) where an incision is made from ear to ear and the skull bones removed, remodeled, and replaced. This surgery is usually done around 9-12 months old due to the blood loss caused by this procedure. The other option is less invasive. It's the endoscopic method where two small incisions are made on the top of the head and a large strip of the skull is removed to allow the brain room to grow. This surgery is usually performed around 3-4 months old and the time spent in the hospital is usually cut down from one week with the CVR to just one night. The downside to this endoscopic method is that the surgery itself does not correct the head shape therefore an orthopedic helmet must then be worn to force the skull to grow rounder.
Oh, how I struggled with the decision on what type of surgery to proceed with. On one hand, the endoscopic sounds like a no-brainer. It's less invasive, the likelihood of Knox needing a blood transfusion is quite less and the hospital stay is just one quick night. But the idea of my child in a helmet for all of his big milestone development moments just didn't sit right with me. I started to think that maybe the more invasive CVR was the better choice because at least once that surgery is done, you are essentially done. No helmet wearing at all.
After some soul searching and many late night debates with my husband Ken and other family members I realized that the only one bothered by my precious baby in a helmet...is me. Knox won't notice it after a few days and it will be off of him before he really develops any memories of his childhood so I have to do what the future adult Knox would have chosen for himself.
I'm confident that instead of an ear to ear scar on his head that he will constantly have to explain and will most likely cause some confidence issues at some point in his life he would rather have two small scars on the top of his head that no one can see and have worn the helmet that he can't even remember having to wear.
The endoscopic method is the best choice for us and it just so happens that I live in the city where this surgical procedure was invented. Dr. David Jimenez developed this procedure and is well known in the Craniosynostosis world. We are so lucky to have him as Knox's doctor and our first meeting with him was spent with him explaining the disorder to us and then taking Knox's "before" pictures. It was at that moment that I started crying and Dr. Jimenez put his hand on my shoulder and said, "I know this is scary but please know that I will take care of him as if he's one of my own".
And so our journey begins! Knox has since had a CT scan so that Dr. Jimenez can see exactly what he is working with. We are meeting with him again this afternoon to review those images and set a date for surgery. I'm hoping that this blog can serve as a way for family and friends to stay informed about Knox as well as using this blog as a therapeutic outlet for myself.
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