As the test results started to come back, things began to look up. His EEG showed normal brain waves - so no seizures after all. He passed his second hearing screening - he could hear after all! His bilirubin levels were back to normal after time under the bili lights.
We were actually very fortunate that he was in the NICU for so long because it wasn't until he had been in there for several days and a new doctor was on call that they found the cause of his odd head the shape (long and narrow). Almost immediately after looking at him and touching his head the doctor said, "His skull is fused!" She sounded almost excited about it and proceeded to tell me how she had only seen a few other kids with this condition (Craniosynostosis) in her 30 years of work. She told me it is totally fixable by surgery and that Primary Children's Medical Center had some of the best surgeons in the world for it.
Honestly after all we had been through in that first week of life, this new diagnosis came as almost a relief. It gave me hope that his chromosomal tests would come back normal, since the major reason they were ordered were because of his funny looking noggin. And it didn't have to be permanent. Although the thought of making my baby undergo a surgery on such a sensitive part of his body was (and still is) scary it was a much better future than some of the others we had been presented with. He wasn't deaf. We wouldn't have to worry about treating him for seizures. And now maybe, just maybe, the tests would show he was chromosomally normal!
Since things were looking up and I hadn't really been home since my unexpected induction a week earlier I decided to go home for the night. It felt heavenly to sleep in my own bed but wrong that I was home and my baby wasn't. Early the next morning we got a phone call saying we needed to "get to the hospital soon. Ethan was going to be transferred to Primary Children's Medical Center." What? But, everything was going well when we had left the night before. We were told that the medical team was worried that his skull was starting to bulge because of the pressure his brain was putting on it so they needed to transfer him to more qualified hands. Then I REALLY felt guilty for leaving him for the night!
Getting ready for his ambulance ride
When we got up to Primary Children's Ethan went in for a CT scan of his skull from which they were able to make a 3-D image on the computer. What a cool technology! Also we got a call saying Ethan's chromosomal testing all came back as normal!!!!!!!!!!!!!!!!!!!!!!! Our baby boy really was going to be ok!
Tiny little guy getting the CT scan
3-Dimensional reconstruction of Ethan's Skull - showing the fused suture causing a ridge on top of his head
We then met with Dr. Kestle - a neurosurgeon, and Dr. Siddiqi - a plastic surgeon. They gave us Ethan's official diagnosis of Saggital Craniosynostosis and explained the surgery they would perform to correct it. They explained that the suture along the top of his head was prematurely fused and he had no soft spot which meant his brain did not have room to grow the way it needed to. If we did not fix the problem by removing a big strip of his skull, it could result in permanent brain damage. They said we were lucky to have caught the problem early in life because they are able to do the surgery endoscopically since his bones hadn't hardened and thickened yet. If the problem hadn't been caught until even a few months later he would have had to go through a much more invasive procedure. We scheduled the surgery for when he was two months old and they said he would have to be in a helmet for a year afterwards to make sure the bones grew back correctly. A year seems like a long time to have a constant physical reminder of all that he's been through, but I suppose we'll get used to it quickly enough.
I'm so grateful that we live so close to Primary Children's and all the world renowned experts they have working there. People bring their children from different states all around to be treated here. I have heard nothing but good things about Dr. Siddiqi and Dr. Kestle and all the miracles they have been able to work. I can feel confident going into this that Ethan is in the best of hands.
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