I know I’ve shared this before, but until the start of 2017, I never really felt the need to advocate for Koan in any significant way. In fact, I think that some of my coping process was to avoid these types of situations. We didn’t do a lot to connect with other families and people who shared similar circumstances. I wanted to feel “normal” and our support structures were working so well, I just never felt the need. That’s a really powerful endorsement of the current Medicaid system by the way. But, when the November 2016 elections were finished, I knew we would be in for a fight. Over the course of early 2017, I started looking for opportunities to grow my network of caregivers and disabled people by attending conferences and other gatherings. Almost all of these inspiring, courageous people share a common thread or story. It seems like just about every one of them had a neonatal intensive care (NICU) experience. Here’s ours…
While I’m very thankful for the St. Luke’s NICU, I never want to see it again. And, I hope anyone reading this has never and will never need to go into one. I’ve visited standard intensive care units several times over the years when my Dad was ill. I’ve only ever been to the St. Luke’s NICU, but the cultural differences were dramatic. The NICU ward was segregated from the rest of the building by a set of thick, windowless double doors. Before entering, everyone was required to check in at the desk anytime you passed the doors. All visitors were also required to wash their hands up to their elbows. So, it was a bit of an ordeal to go in and out. The staff took these procedures very seriously and I’m grateful for that. But, this made mundane things like trips to the restroom or a jaunt to the vending machine a chore.
The rooms or bays were tiny — about seven to eight feet wide and about fifteen feet deep. There was no door at the end of the room, just a curtain that could be pulled to provide some privacy. There was so much equipment in the rooms, that each space could barely accommodate three adults. There was on reclining chair fit into the back corner and two folding chairs that could be opened when needed. Most of the time, we had them put away because there was no room to move if they were out. The room we started out in had no windows. The floor was waxed tile.
The most jarring and unsettling detail was the crib. It was about three and a half feet off the ground. There were rails at the head and foot but none on the sides. Logically, this makes perfect sense. Newborns are not going to roll or move by themselves and fall out. And, it would be pointless for staff to remove a rail or need to bend down to examine a child. But, it still really bothered me to see Koan sleeping on a mattress with no safety guard between him and the hard tile floor.
Koan was in the St. Luke’s NICU about three weeks. This time is right up there with my Dad’s passing as the most psychologically and physically challenging experiences of my life. I’m just happy to have survived it. I have no good memories of the experience. It colored everything. I had been waiting to read all of the Harry Potter books until they were all released — which happened earlier that summer. I had purchased all of them before Koan was born with the idea I would read them during my time off and at late night feedings, etc… I ended up rolling through all seven books in the first few days of our NICU stay. They were a great way to occupy my mind at all hours of the night. But, to this day, I have a lingering bad feeling when I see the movies or think about those stories. It’s kind of like a smell that brings back vivid memories.
The first few days in the NICU were the most difficult. Both Jeri and I stayed with Koan for the first two or three days. Our families and friends took over care for Sydney and Tiber. I don’t know who we would have gotten through this without that support. We got results back pretty quickly, around six or eight hours after the first seizure, that Koan did not have a serious infection. This was great news. The concern was that the types of infections that cause seizures like Koan was having would, to use the words of the pediatrician, “melt his brain”. So, that was a relief. But, we were still all very worried that there was a birth defect and that he was missing a large portion of his brain. The team at the NICU let us know that it would take weeks to get into the pediatric neurology department at the University of Iowa Children’s Hospital. Worse, there was no other certified pediatric neurologist in the area.
The thought that we would need to wait weeks to know if there was this type of defect was almost unbearable for me. Koan had been admitted to the NICU on a Monday evening. By, Wednesday, both Jeri and I were becoming really uncomfortable with the lack of diagnosis. I had spent the better part of two days stewing (with very little sleep) on all of the possible bad scenarios. These were the only two reasons the care team had presented us with that might cause Koan’s symptoms. It seems really likely to me that if the infection had not caused the seizures, it must be some type of congenital problem. The staff in the NICU must have sensed that we were close to a breakdown. They reached out to Dr. Andrew Peterson, a local neurologist, for help. While Dr. Peterson was not licensed as a pediatric neurologist, he had a lot of experience working with kids. But, he was on vacation all of that week. Luckily for us, it must have been a “staycation” for Dr. Peterson, because someone in the NICU persuaded him to come and see us on that Wednesday. This was one of the most profound acts of kindness anyone has ever done for me.
I know my description of the NICU is pretty harsh. But, the people who worked there are second to none. And, I would include Dr. Peterson in this as well. To this day, I’m still so thankful for his time over the next few hours. Dr. Peterson was calm, frank, friendly and compassionate. He examined Koan and got him into a CAT scan as well as wired him up for EEGs. I cannot describe the intensity of the relief when we found out that all of the images and data were essentially normal.
We learned a ton about seizures and epilepsy over the course of the next few days. One of the first things they did when Koan was brought into the NICU with seizures was give him a big dose of Phenobarbital, an anticonvulsive drug. This is a very common medication to give to an epileptic. I was told that it slows down electrical activity in the brain. I was also told that people on this medication lose about 10 IQ points while they are taking it. But, when the drug is stopped, these IQ points return. Dr. Peterson assured us that the seizures Koan was having were not causing brain injury. Koan was initially admitted to the hospital because he was having trouble feeding. The anticonvulsants were not helping.
Koan was sleeping a lot and had no interest in eating. This was really tough. It felt like our new born child was regressing. The first few days at home, he had been alert and awake. He had eaten occasionally. But, now, he was just laying in his open faced crib, not moving, rarely opening his eyes, and he showed no interest in the bottle. I knew it was totally irrational, but I felt like if we could get him out of the NICU and at home, he would make a comeback — everything would be ok. But, they would not let us go until the seizures were controlled (gone) and he was eating independently. So, feeding him became an obsession for me.
If Koan did not accept the bottle within a few minutes of feeding, they would feed him by pushing the formula through a tube in his nose. The first goal was to get him to eat four ounces on his own. Sometimes he would eat two ounces, sometimes one, sometimes none. We would try every two or three hours for all twenty-four hours in the day. The nurses would ofter to feed him, but Jeri and I would almost always do it. So, staying in that tiny room, trying to feed him every couple of hours was pretty tough duty — not a lot of rest. It started to work on my mental state. I began to simultaneously anticipate and dread each feeding opportunity. The name of the game with Koan has always been inconsistency. From a behavioral standpoint, I was falling prey to classic operant conditioning. It was intermittent positive reinforcement. Behaviorists will say that’s most powerful type of reinforcement. Occasionally Koan would eat three ounces, but the next four feedings he would only eat one or two. It was exhausting and I was losing it.
Going into the first weekend, Jeri and I realized we could not lean so heavily on our family and friends to look after Sydney and Tiber. So, we started trading shifts with Koan. We would split into 12-hour shifts. We staggered them so the same person would not pull night duty all the time. But, this also meant that occasionally we would each get a full 24-hour shift, too. This was really the only way to make this work. We lived this way for the next two weeks. It was grueling. The odd thing was that my time away was almost worse than being there. I began to dread going back and that dread would start almost the minute I left. When I was at the NICU there was activity. I need to get up every two hours to try and feed him. I spent time watching him for seizures. It was exhausting in a way that only this type of waiting can be, but at least I was doing something and not thinking or worrying about what might happen. When I was at home, all I did was worry.
One of the other great gifts Koan has helped me understand is that small kindnesses are really important. Sometime during the last week we were there, the NICU staff saw how worn down both Jeri and I were. So, they moved Koan to another room — one with a window and a little natural light. I know that doesn’t sound like much. But, it was huge! We had been basically living in the cave that was his room for two weeks. Getting to see the sun was immensely helpful.
By the start of the third week, Koan was starting to adjust and eat more and more. There was still a lot of disagreement about the number and frequency of his seizures. As a newborn, it was pretty difficult to spot them. They were not dramatic. Up until we left the NICU, I never thought I saw one. In retrospect, seeing what they looked like later, I now realize I probably did see several. Nevertheless, the staff were seeing fewer and fewer. So, in early October, they agreed to release him to go home.
There was no closure for us. We had no idea why this had happened, if it would continue or what to expect. We were told the seizures were not causing brain injury and the only way we would know if there were problems is if Koan began to miss developmental milestones. So, we began to watch and wait. The seizures proved to be really difficult to control, but that’s another story.