Caleb was born in June of 2012 and had to go to several doctors in his first couple of months because our pediatrician thought he made loud, “weird” noises when he ate. After seeing specialist, everything came back great, no problems. When Caleb was two months old his pediatrician noticed that his head was shaped differently than it should have been. He sent us to a Neurologist who ordered an MRI, full brain scan and genetics test. It was hard for us to see our precious 2 month old be sedated for the MRI and brain scan, but we got through that. The Genetics test came back with an abnormality but they could not tell us what the results would be from that. They even mentioned that Caleb may have trouble fathering a child when he grows up, but that’s a mere guess. The MRI
and brain scan showed that Caleb had Sagittal Craniosynostosis. We were referred to UAB Children’s Hospital to meet with the Plastic Surgery Team and discuss our options.
That appointment was scary. I had read so many stories on the Cranio Care Bears website and done as much research as I could so I felt a little prepared. We met with two separate doctors that morning and had to choose between two different versions of the surgery. We made our choice and the pre op appointment and surgery were scheduled. Caleb’s surgery was scheduled for January 29th, 2013, the day he turned 7 months old. The waiting for 3 months was awful. But, we made it to the date of surgery and were surprisingly calm. The surgery lasted a little over 4 hours. The surgeons said there was more bleeding than they expected, so he had to have more of a transfusion. The first night in ICU he had to have more blood. Because of the amount of blood loss during the first night in ICU he had to stay a second night before we were moved to a regular room.
The day after surgery he did drink some Pedialyte and seemed to be okay. When we moved into a new room is when he stopped drinking completely. It scared us because he was showing us that he was hungry but when we gave him a bottle, it seemed he had forgotten how to suck. That lasted for 36 very long hours, but on day four he started to eat again. He was very calm while his eyes were swollen shut, but when he was able to open them again is when he started to cry out and become very irritable. Overall we were in the hospital for 6 days. When we got home he started to laugh and smile again. We have been home for a while now and things are starting to get back to normal, other than he doesn’t sleep through the night anymore, but hopefully that will change. =)
Cranio Care Bears is a true blessing. The care package was very helpful and the prayer chain is very dear to us. It is humbling that complete strangers are willing to take the time to do something nice for someone. For any parent reading this that is about to go through this experience, just take it one day at a time. It can be scary but know that there are so many families that have gone through
this and are praying for you.