We did notice his head was a bit long but thought it was just from a natural childbirth. When we went for his 1 month appointment our pediatrician wanted to keep an eye on his head and felt like one of his “sutures” was a closed. She said not to worry that it was just something for her to keep an eye on. Of course I went home and Googled everything. I looked at photos and read articles and stressed myself out. At this point I knew there was nothing I could do just wait until his 2 month appointment and thankfully time flew. When we went in for his 2 month the doctor said she wanted us to see a neurosurgeon. My husband joked “Oh what will they have to saw his head open?” The doctor looked at us with big doe eyes and said well yes something like that but let’s just wait and see what he says and then go from there. I was in shocked although my previously googling I was in denial that we would have to go through this. I got in the car and called my mother and cried hysterically – how was this happening to us? He was just a little peanut.
We met with the neurosurgeon just a week later it was so great to get in nice and early and he confirmed it was craniosynostosis and referred us to a craniofacial plastic surgeon who took us the same day. These doctors put our minds and ease and told us that they are the doctors to go to in our area for this type of thing and have performed this surgery numerous times. They answered all of our questions and both my husband and myself felt more at ease (if that was possible). We had a CT scan 2 weeks later and our surgery then got scheduled for a month later August 20th (James would be 16 weeks at that point). I never wanted to wish the summer away more than I did this summer. August 20th approached and my anxiety was through the roof. We couldn’t talk or think about it without melting down so we tried not to and just put myself at ease knowing that we were in such good hands with the doctors and the staff at our hospital that all would be ok.
We brought James to surgery around 7am that morning. He was in such good spirits even without eating which was a shock to me considering the boy could eat! When we left him it was the hardest thing I’ve ever done. We waiting out the waiting room with our family and friends who brought us candy and my favorite distracting gossip magazines. First the neurosurgeon came out and told us that everything went really well and that the plastic surgeon was just closing up and should be in out in a few hours to let us know and then we would probably be able to see James.
The LONGEST 2 hours of our lives as we waited finally getting the call that everything was done and that we could go back to see him. He struggled getting off of the ventilator and when we came back to see I was still in shocked though I prepared by talking with other cranio moms and reading cranio stories seeing your 4 month old baby like that nothing could prepare me for that. James had to remain on a ventilator for 24 hours since he was having a bit of trouble breathing on his own. We stayed at his bedside for the entire time. It was so hard seeing him like that but once the ventilator came out he turned the corner. He had a bit of swelling but both eyes never closed! Surgery was on a Thursday and on Sunday we were ready to go home and James’ swelling had already started to go down. He was smiling at us and coming back to normal. Although the scar looked intimidating it was so much better than I thought it would be. This baby was healing amazingly and was so much stronger than I ever thought.
His head now over a month later has pretty much come back to normal and he’s back to himself. Although sleeping through the night is our biggest struggle I wouldn’t have it any other way.
The care we received at Strong Memorial Hospital in Rochester, NY was phenomenal from the neurosurgeon Dr. Silberstein to our plastic surgeon Dr. Morrison to the amazing nurses at the NICU I’ve never felt in a better place for soemth9ign like this.
This little fighter and all these cranio babies are truly amazing. Good luck to all families facing this surgery! Always ask questions to your doctors and nurses and seek support!