I have tried to start this post three times. I just haven’t been able to find the words to express what the past three weeks have held. So I’m going to just write out a chronological order of events instead of trying to unpack all of the emotions and hurricane of thoughts I’ve been in the middle of.
As we learned more about myelomeningocele (spina bifida) and Little Bear’s case while I was still pregnant, the more I wondered about the possibility of him having a shunt after he was born. “What are his ventricles measuring at?” was always my first question during ultrasounds at Children’s. When he was in the NICU, every morning when I got there, I asked three questions; how did he do overnight, anything new, and how’s his head? I expected him to have a shunt within his first week of life. But as the days and weeks started passing I wondered if maybe, just maybe he would surprise us and stay in the 15% of kids with SB who don’t need help with their hydrocephalus.
Three weeks ago, this narrative started shifting. He had his second post NICU head ultrasound and after talking with his neurosurgeon, it sounded like we were heading towards needing some sort of intervention. Little Bear’s ventricles were no longer holding steady and were slowly starting to get bigger. His head measurements weren’t leveling out and the surgeon wanted him to have a MRI. Two weeks after his head ultrasound, Little Bear and I were headed in to Children’s for a MRI. Because I was going to be with him, I had to strip too and put on a hospital gown. I tried to not let the whole experience dredge up too many memories of the last time I had been in that room. Little Bear was on the outside now and he was safely tucked in my arms, falling asleep sucking his pacifier. After the MRI, we had an almost hour long appointment with the neurosurgeon. We talked about the MRI findings and decided it was time to move forward and schedule surgery. The biggest question was which surgery.
After realizing how high the numbers were for kids needing shunts, I started doing research. Carefully mind you, the internet is a mine field for any parent with a kid who has any condition outside of an average child. I stumbled across a procedure called ETV or Endoscopic Third Ventriculostomy. I noticed it was commonly referenced with a secondary procedure called CPC or Choroid Plexus Cauterization. I didn’t fully understand what those two things meant, but the more I read about other moms experiences with shunts versus an ETV/CPC, I wondered if the ETV would be a possible option for Little Bear.
As an ETV is still a relatively newer procedure, when I asked back in November about the possibility of Little Bear getting that instead of a shunt, I was told it probably wouldn’t happen. The biggest concern that specific neurosurgeon had was that the risks for excess bleeding were too high for a newborn. So when Little Bear’s NS (neurosurgeon) said it’s time to consider the next steps, I took a deep breathe preparing for the news that a shunt was his only option. But! The NS surprised me and offered an ETV as an additional option. We talked through what doing an ETV would mean and the NS told me that it would most likely depend on the results of the MRI and what Little Bear’s anatomy actually looked like. After we saw the MRI results the NS actually gave us the option of driving/flying to Utah so that Little Bear could get both an ETV and CPC. The kicker was that our Children’s wouldn’t be starting to add in the CPC procedure until July. Yes, this coming July.
Long story short, we decided to go with the ETV even though the odds were a little stacked against us.
Little Bear had surgery this past Thursday (five days ago) and this mama was a bit of a wreck leading up to the moment we entered the hospital. I watched them wheel him away in the crib bed and knew my job was done for now. He had finally fallen asleep, and was still sleeping as they wheeled him away. It was all up to the surgeon and Little Bear. I knew the next time I would see him, Little Bear wouldn’t be feeling very well. His neurosurgeon came out barely an hour and a half later to tell me how the surgery went. He showed me pictures of a very interesting discovery he had made in Little Bear’s brain. Somehow Little Bear’s brain has created an opening in a membrane that isn’t usually there. The NS explained this was actually a really good thing. That opening meant that doing a CPC would be really easy and actually work well with Little Bear’s anatomy. So basically we went from a 25-35% chance of the ETV working and if that fails then we go to a shunt, to having the option of IF this ETV fails, the NS is willing to go back in, repeat the ETV and then add the CPC because Little Bear is perfectly set up for that. This is such good news for Little Bear. That’s one more option between us and that shunt.
They took me back to see him an hour later. My little bubby was paler than I’ve ever seen him and making awful little rasping cries. He was hoarse from having a breathing tube down his throat and he had lost the ability to suck. He couldn’t actually suck on anything for about 3 hours after that.
I am learning with my Little Bear that the best way to be his mama is to take my hands off and let him drive. So far, five days out from surgery, he’s doing well. His head has gone down a half centimeter, his soft spot is still soft, and he is acting a lot more calm and comfortable post surgery. He’s also doubled his sleeping times at night too. I don’t think I really had understood how much his head had bothered him prior to surgery.
I know this won’t be his last surgery, but I am glad this one is done. There was a certain amount of scary stress about the unknown leading up to finally hearing those words “it’s time to think about next steps” with his hydro. Now he’s had the ETV done, we’re managing his hydro, and now it’s monitoring and hoping for the best from here until the next thing comes up.
I don’t deny it’s hard to just not know what I don’t know when it comes to Little Bear. Some days are harder than others, some days are actually good days. But, don’t get me wrong, this is hard. It is hard watching your child cry because his tummy hurts and his head hurts and you can’t do anything but hold him or touch his face and hope that that’s enough for now. It is hard to see the horseshoe shaped incision on his head. I am glad I was able to hand him off to the capable nurses and I didn’t go with him back to the OR. I don’t think I would have been able to handle that.
I don’t know what’s next. I don’t know what the next month is going to hold, or what things will look like at the end of summer. But for now? I’m holding on to my squishy little bear; holding him close and reveling in his newfound skill of smiling at mama and making his sing-songy sounds.