At Cole’s 2 month check-up the pediatrician had a difficult time locating his soft spot. She asked another doctor to come for a second opinion. His first question was “Does his forehead resemble anyone in the family?” We did not have an answer. He felt his head and said if the soft spot was open, it was very small. We were referred to Children’s Hospital of New Orleans for a CT Scan. The scan confirmed the metopic ridge was fused and we were most likely facing surgery. It was a month before our clinic appointment to meet with the neurosurgeon and craniofacial specialist. In the meantime, we began to research this big scary word; we weren’t even sure how to pronounce – Craniosynostosis.
I came across the Cranio Care Bears site and sat and read all of the success stories and looked at all the pictures. I found lots of answers to our questions. I eventually connected with some local cranio moms who prepared me for our clinic appointment.
Once we went to our clinic appointment it was clear we were having a surgery, our doctors recommended endoscopic with one year helmet therapy.
We were thankful for the option of endoscopic, and kind of a had a sense of relief knowing what we were facing, now we just had to wait on a surgery date, which would end up being one month later (age 4 months).
The day of the surgery was finally upon us and the fear of handing our baby over was equal to the anticipation to get to the other side.
The surgery itself lasted about an hour. But, he was away from us for about 3 hours, between anesthesia and recovery. The doctors said he did wonderful and it went better than ever expected. He had little blood loss, however they did give a half of unit of blood in recovery, since it was mom’s blood and his numbers were border line.
Once we were in a room (a regular room), it was about 4 hours before Cole finally took a bottle. It was a long night but he did great, his pain was easily managed and he slept off and on through the night.
By the next morning, he was back to his smiling self; he had very minimal swelling and was ready for a whole bottle. We were home by lunch time…..one night hospital stay.
We were amazed at how quickly he was back to his normal self and his normal schedule.
At his two week post op check, the doctors said he looked great….as a reward, he got his helmet that day!
As for the helmet, so far so good, he has adjusted wonderfully.
Thank you so much to the Cranio Care Bears for our care package and for all of the support and prayers.