Taylor was born late on Thursday night, January 17, 2013 via C-section. We noticed right away the slight mis-shaping of her head, which the doctors told us was probably due to being in the birth canal for a long period of time. At her 2-week checkup, we saw a partner of our Pediatrician who had some knowledge of the condition Craniosynostosis and referred us to a Craniofacial specialist.
Things moved quickly from there and we later met with an extensive Craniofacial Team at Ochsner in New Orleans, including a Neurosurgeon, a Plastic Surgeon and a Geneticist, among many others. Taylor had a CT scan on Feb 20 with anesthesia, which confirmed the diagnosis of Non-syndromic, right Coronal Craniosynostosis. We chose to move forward with Endoscopic surgery on Thursday, February 28 on her 6-week birthday.
I can honestly say that handing our tiny baby over that morning to the nurse was one of the hardest things I’ve ever had to do. After a long 2 hours, we were told that the surgery was a success and we could head up to PICU to see her soon. While handing her over was hard, seeing her in that hospital bed hooked up to all those machines, moaning and drowsy, was difficult, but a welcome sight…We were on the other side!
She spent one night in the PICU and we were discharged late the following night, after a bought with vomiting from the anesthesia. I was so nervous to bring her home. Is she in pain? Can we kiss her head? Following an allergic reaction to the over the counter meds we were giving her for pain, and a sleepless night, Taylor was back to her normal, happy self by Sunday.
2 weeks later she received her newest accessory, her helmet, which she will wear until the 1 year anniversary of her surgery. She adjusted to it just fine and we find that she even seems to miss it when we take it off for bath time!
We consider ourselves very lucky that she was diagnosed so early and that endoscopic surgery was an option for us. We are currently working with Physical and Occupational Therapists for slight torticollis, and she is meeting and beating all the milestones thus far! We recently met with the Craniofacial Team for her 6-month post-op checkup and they were all very happy with the results and her progress with the helmet! Only 6 months to go!!