Things have been a little crazy since Caiden’s surgery and I haven’t had the time to update everyone on his progress. I also needed time to digest everything that happened that day and the weeks that followed. If you know me, you know that I often go silent during stressful times. It keeps me from crying every time someone asks a question. But enough time has passed and my head has cleared (some) so here we go.
Last shot of his head shape. You can see how the back of his head bumps out.
Surgical markings – yup, we’re here for skull surgery.
We arrived at Children’s at 5:45 in the morning, since he was one of the first surgeries of the day. We met with a parade of doctors who came in to explain what they were responsible for during the procedure. All of it was a bit of a blur, since we were anxious to begin so it could end. When it was time, they carried him back. Amazingly he was cheerful that morning, even though he hadn’t eaten since one a.m.
We were told surgery could take two and a half hours, so we filled the time by grabbing something to eat in the cafeteria. My mom came with us that morning for support and my dad arrived after dropping Cam off at school. After settling in our reserved spot in the waiting room, the surgeons came out after less than two hours to say the surgery was over and it was a success. Upon removing the sagittal suture line of his skull (a piece about an inch wide, five inches long) they saw that his plates were already 90% fused!
After talking to the doctors, we were allowed to go see him in recovery. It was heartbreaking to see him hooked up to so many wires. His soft baby scent was replaced with a gross, antiseptic smell. He was groggy and he whimpered every once in awhile. We kissed him and held his hand so he knew we were there with him, and that settled him a bit. A nurse helped get him in my arms so I could nurse–a very difficult task due to the wires.
One incision point, the other located on the back of his head.
Thankfully, our stay in recovery was short-lived, and we soon moved up to his room. I noticed his feet and hands were covered with little pricks, a sign that his veins were difficult to find. Luckily he was already asleep when they tried to start a line so he didn’t notice. That first day we had several visitors, but Caiden slept through it all. He was hard to rouse for feedings, and the IVs and monitors made it difficult to pick him up. When he did wake he often cried out in pain, so letting him sleep was ideal.
The next day is when we noticed the swelling. I started to rotate his head from side to side while he slept, hoping to even out the swelling. The parade of doctors came through again and were all pleased with how he looked. Our pediatrician also called (on his day off!) to see how he (and I) were doing. Chris and I received countless texts and emails inquiring about Caid and sending their best. We were both touched by the outpouring of support from everyone.
Caid shared his hospital room with another infant. I did not ask a lot of questions since I was trying to be respectful of HIPA laws, but I do know he spent time in NICU at birth. He was about two months old, extremely cute, and not ONCE did I see any family members visit him. The nurses came in to feed and change him, but since they have very little downtime he didn’t get a lot of snuggle time that every baby deserves. He spent most of his time alone in his crib. I desperately wanted to give him love and Mom joked about taking him home with us. One nurse told me I should be thankful his mother did not show up since she was not a nice lady and would certainly cause trouble for us if she did show up. His solitude saddens me even more now as I think back.
Around noon we were discharged. We hurried home and I gave Caid a bath, trying to wash the hospital smell off of him. Once he was settled, I enjoyed a shower. He had a week for the swelling to dissipate before getting his helmet. At that point he could resume his normal life, and I could return to work. Caiden and I needed that time off, since he reverted to a newborn sleep cycle upon recovery. He woke every two hours during that week on top of refusing his crib. I cannot recall many details of that week due to sleep deprivation, and I cried more then than before the surgery.
Swelling - the day after
Swelling – two days after
By Friday of that week, his swelling had dissipated and he was fitted for a helmet. The surgery itself is not what reshapes his head–the helmet does all the work. Without it, his head would fuse back into the same position. It took some getting used to, and it disrupted his sleep even more. It was adjusted after a week of wear, and that seemed to help Caid’s comfort. Now he doesn’t seem to notice it at all.
Knowing what we know now, I am glad he did not give me the option of a natural childbirth by staying breech. The surgeons believe his plates started fusing in utero after seeing how fused they were at four months. There is a good chance that his head would not have collapsed correctly in order to come out. Proving, once again, that things happen for a reason.
Staying in a children’s hospital brings up a lot of conflicting emotions. On one hand you are terrified for your own child and want him to be healthy again. On the other hand, you are so thankful that you’re not there with something worse. You are surrounded by kids who are sicker than your child and your heart goes out to them. But our family is so lucky to live close to an amazing, award-winning children’s hospital. I cannot praise the doctors, nurses and staff at St. Louis Children’s Hospital enough.
We are so thankful that Caiden had a successful surgery and is well on the way to recovery. The shape of his head has drastically changed with the help of his helmet, and his incisions have healed nicely. After his hair grows in, no one will ever know they are there. Thank you to everyone for the hugs, notes, good thoughts, comfort, food and friendship. We are very lucky to be surrounded by such caring friends and family.
