After a somewhat complicated pregnancy and a very complicated labor, my wife and I were given the greatest gift of our lives; Aiden was born on 12 May 2012. The birth was stressful on his tiny body and he had a hematoma on the back of his head, landing him to a weeklong All Inclusive stay in the PICU. He looked so big next to all of the premature babies around, and we just wanted to take him home. After a long week in the hospital we finally did get to go home, where we began bonding and loving our new and amazing little baby boy. The hematoma on his head also healed quickly, and we didn’t pay much attention to how his head was beginning to form. After a few months it was becoming more visibly obvious that his head was getting a “little” long; we assumed as he grew, his head would grow and expand and fix itself.
Then, at a three month check up with our pediatrician my wife was told that we should make an appointment with the Kopflinik (Head Hospital) in Heidelberg because of his apparently fused skull. It didn’t take but a cursory look by the specialists for them to know that Aiden had craniosynostosis and that he would require CVR surgery for sagittal craniosynostosis. We were devastated about the thought; however, over the following three months we educated ourselves, found groups and blogs of families who had tackled this journey and found some piece of mind. One story of another little sagittal boy named Sawyer in particular really helped answer the personal questions we were having, like what to prepare for, how will the surgery affect him and us, and what to expect in the days and months afterwards. Still, even with all of the preparation you can’t be ready to hand your baby over to the doctors knowing what’s going to happen, and be okay! The hours to follow were the worst, EVER! After about 4 hours, one of the surgeons came out……and informed us that everything went as planned, and that Aiden was in post surgery recovery and we would see him soon. Another hour and a half later we finally did. He looked like, well, like Aiden, just with a lovely bandage turban. He was then moved to the PICU, where he now looked enormous next to all the premature babies, and he slept! Perhaps even more importantly, we slept. Against instinct, but in good judgment we left the hospital (knowing Aiden would be in a medicated slumber) and slept, with some piece of mind that our baby had made it through surgery and was now on the other side.
In the days that followed, we watched our baby expand and swell, everywhere. Luckily, his eye swelling only lasted a day and he was able to squint out to see us there to encourage him, and things didn’t seem that bad anymore. The following few days in the hospital saw ups and downs….his first post surgery smile, the first sight of his scar and the staples, the removal of the drains, and him returning to the little boy we’d brought to the hospital just a few days earlier. It was, and still is mindboggling to me how quickly his amazing little body healed.
It’s now been just shy of three weeks since his surgery and it almost feels like it didn’t happen. His round little head looks amazing, his scar is healing and isn’t even a quarter as bad as I’d imagined it would be. He’s continued developing, mastering rolling over just today! I don’t think we could have been happier with how things have gone, and we can only hope that things stay this course. We find ourselves now worrying about the typical things the parents of a 6 month old worry about, like teething; yeah his first teeth are coming in, four of them at the same time!
We’ve been so fortunate with all the support we’ve receive from everyone, and would always be more than willing to share more with any other family preparing to undertake the cranio voyage!