Sawyer – Sagittal

We were at our routine 4 month check up when our pediatrician suggested we see a specialist for Sawyer’s head shape. It was measuring in the 99th percentile. But it had been since before he was born, so I had always thought nothing of it. She said it was probably nothing to worry about since Daddy had a big head, but wanted to be sure. I was sent for having such a big head but realistically that meant nothing, but they caught his fused sutures instead. Lucky little blessings. We went into the neurologist’s appointment with the mentality that it was nothing. I was left speechless and stunned as we walked out of the office with a diagnoses of craniosynostosis, a word I had no idea how to spell or pronounce properly, more questions than answer’s and surgery looming over us. We had moved away from all our friends and family, now a whole country away. So it was hard calling each and everyone one of them to explain what had just devastated our lives. It took me a week of feeling helpless and alone before I decided to publicly put ourselves and our story out there. I needed an outlet and I began blogging about Sawyer’s diagnoses and processing it. I immediately had lots of long distance hugs and was flooded with messages from friends of friends who had experienced this. I began to draw strength from sharing his big cranio moments, from the first appointments with the pediatric neurosurgeon & pediatric plastic surgeon, to the CT scan and beyond. I think the one thing I didn’t share was how painful it was to hold your child down as they take blood prior to surgery. I never want to hear my baby cry like that again. It’s something I think everyone should be prepared for. There is nothing you can do, its necessary, but so hard on your heart.

One of the hardest things was the waiting game. I felt like the months dragged on as we waited for a surgery date. 4 months later on June 6th, Sawyer was booked for the big surgery. I was a mess the night before. I literally could not sleep. I ended up baking cupcakes for the PICU nurses, (doesn’t hurt to butter up the ones looking after you kid for the next week). We pulled Sawyer out of bed bright and early and he was happy as could be. He was fantastic through not eating on schedule at the hospital waiting room. Even the smallest hospital gown was drowning on him, so they just let him go in a diaper. It seemed impossible that we made it this far. It was like I was watching myself from above as I had to stop at a red line on the floor and hand my sweet little baby over to a complete stranger. He didn’t even look back he was too interested at the hustle and bustle around him. I don’t know if it made it easier or harder that he went so easily from my arms. The next 6 hours were excruciating. Again I was blessed to be connected through my blog and facebook. We had an enormous support group even though few family and friends could be there in person. It helped pass the time in a cold sterile waiting room. I, like most mom’s are probably guilty of, let my thoughts wander to horrible places. Your imagination can be your worst enemy. But sooner than expected, our Neurosurgeon came to tell us herself that the surgery went perfectly, and we could see him after he was transferred to the PICU.

I walked in to see my beautiful boy with a mess of tubes and cords coming from in and around him, wrapped in gauze and {unfortunate timing,} bleeding profusely from his head. He looked like himself for the first afternoon. Even taking a pacifier, after refusing it for months. He was so sedated the first 24 hours that we just sat in his room, occasionally rotating a visitor in. By the next morning he was beginning to swell, and it just continued to get worse. He was one of very few who I’ve seen in the success stories that had a not great recovery. His whole body swelled, and he was given multiple transfusions as he continued to bleed. We couldn’t figure out why so we ended up staying extra days. Which to be honest, I was thankful for. I was so afraid of taking him home and being without nurses and doctors. I didn’t get to hold him until the 5th day. {I’ve also read this is not the norm.} And I only got to hold him all hooked up still, right beside the bed. When they removed the gauze, it was startling to see such a massive scar, but even more so, seeing my little redhead who was born with hair, bald! So funny how such a minor thing took over in my mind over the big scar. We continued to stay in the PICU for just over a week, because Sawyer was still swollen and not doing well coming off pain management. He was projectile vomiting anything beside morphine. But 2 days later Sawyer finally began to come down and our our last morning even managed to peek one eye open, and gave us the biggest smile. We were discharged and leaving the little room we had made our home away from home. I was excited to leave but nervous at the same time.
His first days home were rough. But the minute we got home and I laid him on the couch, one of our dogs, “his best friend” jumped up so excited to see him after he’d been gone for so long, and he laughed and laughed and laughed. Most heartwarming feeling ever. He still wasn’t keeping anything down and was agitated a lot. He wouldn’t allow me to lay him down on his back without a huge cushion under his head. I slept on the floor beside his crib for the first 3 nights. Slowly but surely though, he began to show less and less swelling and bruising. And he was smiling within 10 day’s of the surgery. Which for me meant I still had my precious little boy. His hair grew back fully after 3 months, and today 6 months later, you cannot tell at all that he had such an intense surgery. I can’t even show people where his scar is, it’s so well healed.
Looking back it’s hard to believe we even experienced this. I can have day’s were it feels like yesterday, but most of the time it’s like it never happened. I have a lot of people to thank for making it easier. Most of all Cranio Care Bears who was the first site I came across. Reading success stories brought me to tears most often, but made me stronger knowing there was an incredible outcome. I found a support group on FB and through sharing on my blog { } I found other parent’s who understood what I was going through. And made some lasting connections. I still get new notes of new parent’s finding Sawyer’s story and it makes it all seem worth it when I can help someone else through this heartbreak. In the end I look at this as a blessing. I found out I am much stronger than I ever believed possible. I was humbled immensely during our stay in the PICU and talking to parents who had spent their child’s entire life on that floor. And I think my family is better having gone through this. To all the parent’s still pre-surgery, it will be over before you know it. And all the parent’s post-op thanks for making an awesome supportive cranio community!
In honor of Sawyer’s first birthday we decided to forgo any gifts as all this kid needs is a ball and a book to make him happy. Instead we asked for donations to Cranio Care Bears, I was shocked to see the huge support and we ended up raising just over $500 dollars!! I can’t tell you how awesome it was to make such an impact for his birthday. I saw lots of other’s on the Cranio Care Bears Facebook page also wanting to follow suit, and I think it’s one of my favorite cranio stories we got to share.