Week in the NICU (and a note on Will)

A note on Will: I haven't really mentioned Will much, except in passing. That's mainly because all this is just me speaking about all the thoughts and feelings I remember having over the past several months. I can say without a doubt he has been the rock for our family throughout this entire experience. He is so steady, he truly is the calm to my storm. But that doesn't mean he hasn't been just as deeply affected by all this as I have. Recently he read through all the posts I've made so far and afterward said it was hard to read, and that when he looks back on all our time before the birth and in the ER wondering what was going on, he just remembers being so, so tired. If he ever wants to speak more openly about what this has been like from his perspective, he is welcome to do so, but until then this is all just going to be from my point of view. Out of respect for him I can't try to tell his story for him.

The next day was a revolving door of doctors. We saw neurology (I did NOT like the neuro doctor who rounded on us, in case anyone is wondering. I believe he was a fellow.), genetics, a slew of different therapists, a psychiatrist (for us, not Eli), endocrinology, and infectious diseases, just to name a few. I loved our head NICU doctor, Dr. Dariya. He was so helpful, so good at explaining things, and reminded me so much of my friend Angelo it almost gave me a sense of normalcy in the face of chaos. Eli had an EEG done, as well as blood tests every few hours. His feet had scabs and scars for months after this week of heel pricks. We were told they thought his soft spot might be closed already. We didn’t quite know what that meant…and they weren’t sure if it really was or not. They said a plastic surgery doctor would come talk to us soon. We were only allowed to hold Eli while wearing gloves and gowns, which I hated, and there were so many wires and tubes coming out of him it was nerve-wracking trying to get him out of the incubator and into our arms.

The first monumental visit came from genetics in the form of Dr. Angela Scheuerle. From the moment we first heard about his short long bones (it sounds like an oxymoron, but it's not!), we had been given her name many times. By my OB, by our perinatal doctor, and by Eli’s pediatrician. At that point, our biggest skeletal concern was still achondroplasia. She came in, got a detailed family history from us, and asked what our concerns were. Achondroplasia was the first thing out of my mouth. She looked at him and said, “No, he definitely doesn’t have that.” I had never been so relieved in my entire life. The second important visit we had that day was from endocrinology. They told us Eli’s parathyroid was not making any parathyroid hormone. This had caused his calcium to drop very low, and a symptom of that is something called a tetany. It looks like a mild seizure, but isn’t actually a seizure. Those were the twitching episodes Eli had been having. In addition to the low calcium, another side effect was having very high phosphorous levels. It was extremely important to make sure Eli was receiving adequate nutrition to help those levels even out, and he wasn’t cooperating and eating well, so they put a feeding tube down his nose and began giving him calcium carbonate intravenously.

The following few days entailed more of the same. Doctors came and went, nurses came and went more often. We took turns running home to shower and catch a few hours of sleep at home in a real bed. We spent every night at the hospital, though, usually with me in the waiting room and Will in our NICU room. Finally his calcium and phosphorous levels were stable enough for us to go home, but we still hadn’t seen anyone from plastic surgery. I don’t know if they would have sent us home without seeing anyone from that department, but it didn’t happen because I brought it up, over and over, to everyone who came in, and finally, just before we were released, our (future) plastic surgeon came to see us. The lesson I learned here is you must ALWAYS advocate for your child. Children’s Heath Dallas is an amazing facility with fabulous doctors who are leaders in their fields, but I promise you none of them care about your child as much as you do. This is not a criticism of Children’s in any way. We have had 95% wonderful experiences there, but things slip through the cracks, and sometimes you can’t just sit and be polite anymore. It would be doing you, and your child, a disservice.

Moving on: we were visited by Dr. James Smartt and his team, and he explained that there are several sutures in the skull. When a suture fuses before a child’s brain is fully developed (usually as a baby), it’s called craniosynostosis. The suture on the top of the skull, called the sagittal suture, is what was already fused in Eli’s case. He explained that craniosynostosis was a relatively common issue, and sagittal craniosynostosis was the most common iteration. He preferred to fix it with an endoscopic strip craniectomy. He and a neurosurgeon would perform the surgery together, cutting a small slit in the top of Eli’s head and another towards the back. They would remove a rectangular piece of skull from the top of his head (about the size of a credit card), and also place cuts (without removing anything) in front of and behind his ears, giving the skull more room to open up, like a flower blooming, as his brain grew. All in all, Eli would only be under anesthesia for about 45 minutes. This less invasive method is preferred by most over the old method, called cranial vault reconstruction (abbreviated CVR in most craniosynostosis discussions), which opens the entire skull and takes several hours. The downside to the endoscopic surgery is the helmet. To help the skull form into the optimum shape, babies have to wear a helmet for months. In our case, our surgeon likes them to be in the helmet for at least a year. This was all a lot to digest. A few days before, I thought we had nothing to worry about. Then we ended up spending five days in the NICU and left the hospital realizing our baby would have to have surgery before he was four months old (another thing about the endoscopic surgery, it has to be done before the baby is too old for it to work properly). And this all had me wondering…calcium is bone related, right? And his craniosynostosis obviously affected his skull, which is a bone. Was it possible we could have the bad luck to have THREE random things happen to us, or were these issues and the short limbs related somehow?

Eli before his EEG. There were TONS of leads attached to his head underneath all that gauze.

G-Daddy skipped a lot of mornings at work to come visit