Craniectomy Preparation

We immediately started researching craniosynostosis and preparing for his surgery. The hospital called us to set up a second appointment with Dr. Smartt and a consultation with the neurosurgeon we would be using, Dr. Weprin. At my request, we had also been referred to an orthopedist and Scottish Rite to discuss Eli’s length. Wanting to cover all my bases, I sent emails with photos of Eli’s head to a few pediatric craniofacial plastic surgeons who specialize in craniosynostosis and do email recommendations, but in the end decided I was happy with Dr. Smartt and Dr. Weprin and their experience and approach. Our consultation appointments with those two doctors were very short and sweet. Photos and 3D scans of Eli’s head were taken, they answered all our questions, and their back office team started working to find a date they were both free before Eli’s four month “deadline.”

Eli was NOT sure about the 3D scan

We had our orthopedic appointment at 7:30 AM on my birthday. Not a great start to the day. Because Eli was still so young (five weeks old), there wasn’t much they could tell us yet. They said if we so chose, we could do full body X-rays, but his bones were still so tiny they probably wouldn’t be much help. Our best bet was to just watch his growth curve and wait. They told us to come back in a year and sent us on our way. The orthopedic doctor also recommended Dr. Scheuerle (a geneticist) to us, as so many others already had. I decided I was going to get an official referral to her if it was the last thing I did. We were also sent to an early childhood intervention appointment around this time. On his EEG, neurology had noted he was just a tiny bit behind where he should be, and laying in an incubator for a week, only able to be held every now and then with gloves, gowns, and masks on didn’t help on the stimulation front. They set us up with an occupational therapist, who would come to our home twice a month and work with Eli on motor skills and the like. During this time, Eli was still going to the hospital at least once a week for blood tests, to ensure his calcium and phosphorous levels remained steady. I dreaded these appointments. We quickly learned which phlebotomist could find a vein with one stick and who would have to stick him four times before being able to take blood. Eventually, Eli stopped crying during these appointments. It eased my mind when he slept through the pokes, but it also made me feel so terrible that he was two months old and already so used to getting stabbed with a needle it didn’t even bother him anymore.

We finally got a surgery date scheduled. I had mentioned to the nurses I would be out of town the weekend of May 20^th, that it was a trip I could cancel if I HAD to, but I really really didn’t want to. So they scheduled the surgery for May 22^nd, the morning after I was set to return. I didn’t tell them I was going to be in Las Vegas for two Cher concerts…I was scared they would judge me. In fact, I still wonder if people judged me for the decision to leave my not yet three-month-old, who was about to have skull surgery, to spend a weekend in Vegas. But, we all have things that matter to us, and Cher has been a major part of my life since I was a preteen. I figured it would probably be good for me to think about something else for a few days.

Packing for this hospital trip was a little different than last time. We had plenty of time to get ready and knew what we would need. Just in case anyone is here looking for recommendations, the things we had to have were our phone chargers, comfortable, easy to layer clothes so we wouldn’t get too hot or too cold, toiletries, my glasses, and snacks. For Eli we brought burp cloths (our hospital just had washcloths and they are super scratchy and not very big), bottles and a bottle brush, and button up clothing. He wore only a diaper most of the time, but when we did dress him short sleeved rompers with snaps were the easiest to get on and off over all the tubes and IVs he had stuck to him everywhere. Most hospitals will provide formula, just make sure they have your brand. And as far as I know ALL hospitals provide diapers and wipes. I also brought Will’s iPad because I was in the process of interviewing for a new job and they had several projects for me to complete (by some miracle, I got the job).

I was very worried before the surgery because I assumed we would have to withhold food for a long time like you do in adults. Luckily, since babies metabolize food so fast, it wasn’t as terrible as I was expecting. We gave him his last bottle at around 8 PM the night before. Then, at 2 AM, we gave him some water sweetened with apple juice. It’s common to use Pedialyte as this “last supper” but Eli wasn’t able to have Pedialyte due to his endocrine issues. We arrived at the hospital around 6 AM and checked in on the main floor. Soon an employee came by and directed us down a few hallways an up and elevator to the surgical floor. We checked in here and received one of those buzzers they use at restaurants. When our buzzer went off a few minutes later we were escorted back to a hospital room. We undressed Eli and were given the tiniest little hospital gown I’ve ever seen. Beforehand I was told we would be able to stay with him until he was put to sleep, but that wasn’t the case. A nurse took him from me and walked us into the hallway, pointing us back to the waiting room. We kissed him one more time and told him everything would be okay, then left.

(Sorry for the abrupt ending. When Will recommended I write out my feelings I wrote and wrote and before I knew it I had ten pages. I've slowly been breaking that into smaller chunks here. I've almost reached the end of what I wrote on that first day and there's really no good stopping point for a while.)

Photo courtesy of my Snapchat...