Before you were conceived
I wanted you.
Before you were born
I loved you.
Before you were here an hour
I would give my life for you.
This is the miracle of life.
I wanted you.
Before you were born
I loved you.
Before you were here an hour
I would give my life for you.
This is the miracle of life.
Grayson Joshua was born on December 13 on a very cold snowy day. He was two weeks early, delivered by Cesarian Section. Our little man was so very tiny! 5 pounds, 13 ounces. Grayson was born with lots of dark black hair and light blue eyes. He looked just like his Dad, and we fell head over heels in love with him. To us, he was absolutely perfect.
Although Grayson was our first baby, we immediately noticed that his head shape was different than we expected. When I was pregnant, everyone told me that since my baby was being born via C-Section, he would immediately have a round perfect head. But when Grayson was born, he had a prominent ridge down the middle of his forehead, running from the soft spot on the top of his head to the bridge of his nose. No one at the hospital mentioned anything about it, and so I didn't worry too much at first. I thought maybe it was because of his positioning in my belly. All of my ultrasounds from about 5 months on showed that Grayson's head was very cozy and snug behind my hip bone. We would laugh when we came out of the doctor's office with nothing but a picture of his foot because he was hiding from us. We asked some friends and family, who assured us that babies have strange heads when they're born and it should round out on its own.
Two weeks later, the ridge was still there. Josh and I did the worst thing you can do in situations like this - we Googled. Up came a virtual tidal wave of frightening diagnoses and confusing medical terms. Was there really something seriously wrong with Grayson? We scheduled an appointment with our pediatrician's office the next day. The doctor examined his head, and assured us that since his soft spot was still open, he was probably fine. He said we should just keep an eye on it, but it should work itself out. We should have been relieved, but we weren't. Something wasn't right, and we weren't ready to let it go. Again, we consulted the internet. This time, we were determined to be brave enough to get to the bottom of this. And finally there was the answer we had been searching for - CRANIOSYNOSTOSIS. We read and read and read.
An infant's skull is made up of several bony plates, connected by fibrous sutures. These plates allow the infant's skull to mold itself through the birth canal and also to expand with their growing brain during their first years of life. Craniosynostosis is the premature fusion of one or more of these sutures, often resulting in an oddly shaped head. Failure to treat craniosynostosis can result in pressure on the growing brain, and can lead to brain damage or developmental problems. Treatment for craniosynostosis requires surgery.
Strengthened by the realization that we might have answers, we returned to the pediatrician's office when Grayson was 8 weeks old. We saw a different doctor, and again raised our concerns. The pediatrician scheduled an x-ray immediately, which came back as inconclusive. A CT scan was performed the following week, and we had our diagnosis. Grayson was born with Metopic Craniosynostosis, which is a premature fusion of the metopic suture - the one at the front of the skull that runs from his soft spot to his nose. Although cranio affects roughly 1 in every 2000 infants, Metopic Cranio is relatively rare and the surgery requires both a pediatric neurosurgeon and a pediatric craniofacial (plastic) surgeon. An incison will be made across the head from ear-to-ear, and the surgeons will reshape the skull, and widen the orbital bones. Spokane does not have a pediatric craniofacial plastic surgeon, so we were referred 300 miles away to Seattle Children's Hospital.
Seattle Children's Hospital was amazing. We met our team of surgeons when Grayson was 4 months old, and he was such a trooper with all the bloodwork and the exams. the surgeons explained that they wanted to wait until Grayson was at least 9 months old to perform the surgery. He would need plates and screws to hold his new head together, and the surgeons said they've had the best results when they wait for the baby's skull to harden and thicken. The craniofacial surgeon said, "that way, things stay where we put them". I can't argue with that logic. We made the best of the trip by turning it into a weekend family vacation. Grayson loved the Seattle Aquarium, and we took him to see the fish fly at Pikes Place Market. After that, there was little to do but wait, and try not to think about it everyday. In any case, we were looking forward to spending the summer with our little man.
In the months that followed, Grayson has grown up to be such a happy, loving, and adventurous baby. He started daycare and learned to be so much more social and independent. From the time Grayson could move his arms and legs, he appeared to be incredibly frustrated by his inability to move where he wanted to go. Finally, he began to roll, then crawl, then stand, and now he 'cruises'. His teacher at daycare called him a "brave little man" and I thought, yep that's our Grayson. He smiles often, and once he started to laugh I just wanted to freeze time and listen to it all day. At his six month check-up, his doctor called him "mechanically fast" for his age. We were so thankful that his cranio was not affecting his development whatsoever. 
Grayson has had a busy summer! He went to meet his great-grandparents in Washington, D.C. He traveled to Vancouver, Canada and came with us on all our hiking adventures. He went to his first baseball game, and to the county fair. We also spent a lot of time goofing off at the park. He was in the famous 12K Bloomsday Race, and he even earned a coveted Flying Irish shirt by coming with us each week for our 350+ member running group! It's been an amazing summer, and we could not have asked for anything more. 
Josh and I have taken many moments to stop and just watch. We just stare at him, and then look at each other beaming with pride as if to say, "Good job. He's awesome." There's a time every night when Grayson falls asleep in my arms, and although I know I need to put him in his crib, I hold him just a bit longer to watch him sleep and feel him breathing in and out. Just because I can. We make him laugh as often as we can, and we almost physically hurt when he cries. I know that babies need to cry sometimes. But I also know he'll have tough times ahead and it's almost like I believe that I need to prepare for the tears ahead with more happiness now. Sounds silly, but that's what goes through my head every time he's upset.
I can't say enough about the online support groups I've encountered with other "cranio moms". When Grayson was diagnosed, I felt scared, angry, confused, and incredibly isolated. Social networking groups, and advocacy groups like Cranio Care Bears, CAPPS, and CranioKids.org have made all the difference. I will love these women until I die, and I haven't even met most them.
