Koan was born on September 13th, 2007: a Wednesday evening. Just like Tiber, it was a quick labor. When Jeri got home from work that day (around 5:00 PM) she let me know she was having some contractions. She wasn’t overly concerned with these symptoms. After all, Koan’s due date was not until early October and we had gone through false labors before. But, just to be safe we packed up Sydney and Tiber (aged 8 and 6 respectively) and drove to the St. Luke’s maternity center to have her examined.
We got to the hospital around 6:00 PM. Koan was born before 7:00 PM. The labor went so quickly that he was delivered by a nurse. The on-call physician was at the other hospital, Mercy, and could not make the drive over in time. A side from how quickly it happened, there was nothing really remarkable about Koan’s birth. Everything seemed fine — ten fingers, ten toes, etc… He looked perfect. And, while he didn’t cry a lot right away, he did eventually cry. He ate. He slept. We thought everything was great. We called family and celebrated.
Koan came home that Friday. On Saturday, we hosted a number of friends to watch the Iowa vs Iowa State football game. I recall holding and trying to feed Koan as the Hawkeyes lost on a last second field goal in Ames. During the game, a friend commented on how dramatic and frequently Koan would stretch and yawn. He would reach a hand above his head and turn his head to the side and yawn. I had seen that several times since he was born and by Saturday I had grown accustomed to it — it was just normal behavior for Koan.
On Sunday, a nurse came for a home visit. This was the standard follow up visit to see how everything was going. As far as we could tell, all was well. Koan didn’t love to eat like our other kids, but he was waking and sleeping, pooping and peeing as we would expect. So, again, we thought everything was fine. As part of the routine visit, the nurse weighed Koan. He wasn’t adding weight. And, while it’s not unusual for a child to backslide a little in weight after coming home, the nurse thought it would be good for us to bring him back to the hospital for a routine examination. Jeri and I thought this sounded prudent, so we let the nurse setup an appointment back at St. Luke’s for the following day, Monday.
The appointment was scheduled for mid-morning. When we got there, the team of nurses and a pediatrician looked Koan over and watched us feed him. We all agreed, just to be safe, to admit him for a day or two to stabilize his weight. It was pretty clear at this point that he was really inconsistent with feeding. Sometimes he would take the bottle and other times he would just not latch on. The feeding consultant assured us that sometimes with kids who arrive a few days early — remember Koan was born three weeks before his due date — that the suckle reflex takes some time to “kick in.”
The staff at St. Lukes were (and I’m sure still are) awesome. It took several hours to meet with everyone — the feeding specialist, the pediatrician, etc… So, it was well into the afternoon before everything was wrapped up. We all agreed it was best to wait and see. Send him home again, but follow up in a couple of days with another in-home visit. But, just as we were finishing up the details a really scary thing happened.
I was holding Koan. As just a precautionary measure, they had fitted Koan with a heart rate and respiration monitor. This device gave a reassuring visual for each breath and would signal an audible alert if respiration had stopped or slowed. Everything had been fine. But, just as our meeting was finishing up and while I was still holding Koan, the monitor began to go off. He was not breathing. At first, no one did much. I think we were all shocked, hoping, expecting his breathing to resume. But after ten or twelve seconds — which seemed like an eternity to me — the pediatrician called in a “code pink”. A “code pink” is the pediatric version of a “code blue” — the “all hands on deck” emergency call that goes out when someone is dying. This was absolutely horrifying. I was still holding Koan. He was not moving and he was now starting to turn blue. After about twenty more agonizingly slow seconds, Koan began to breathe again. No one had done anything, I was still holding him. This is right around the same time the crash cart wheeled into the room.
I was shaken up. One of my gifts is that I am usually the calmest person in the room in a crisis. But, this was not the case in that situation. I lost it. I was shuddering with adrenal tremors and sobbing. I guess this is an understandable and perhaps even reasonable reaction given I believed Koan had died while I was holding him. The care team decided to readmit him for the night for observation. I wish I could recall the pediatrician’s name. I was a really great, compassionate guy. He spent a lot of time with us after this happened — primarily to reassure me that everything was going to be ok. It was obvious that I was very upset. While I did, and I still do, appreciate his efforts — it made what happened next even more difficult…
As soon as the decision was made to put Koan back in the hospital, Jeri and I had to devise a plan for our older two kids. Our good friends, the Derrs, had yet again pulled our bacon out of the fire. They had picked up Sydney and Tiber from school and taken them to their home in Marion. Our plan for that day was that we would both go and get the kids from the Derrs house. I would stay at home with Syd and Tiber for the night and Jeri would then pack at home and return to the hospital to stay with Koan. Before we left St. Luke’s, we called the Derrs to let them know our plans. We jumped in our van and started heading north on I380 toward Marion to get the older two kids. We had been out of Koan’s room for less than ten minutes when Jeri’s mobile phone rang. All I could hear over the road noise from the interstate was monosyllabic responses, but her face had turned ashen. She was really scared. The hospital had called and was requesting that we return immediately. Koan had experienced a seizure.
We immediately returned to the St. Luke’s and found the room we had left Koan in was empty. We had to ask about his location at the nurses’ station. A very serious nurse lead us through a series of hallways to the neonatal intensive care unit: the NICU. I had never seen or visited a NICU before. Before we were admitted through the sealed double doors into the unit see Koan, they made us scrub hands up to the elbows and briefed us on conduct — no loud talking, limited electronics… etc… It’s hard to describe how disorienting all of this was. I totally understand the necessity of these tasks, but we had no idea what was happening. Once we were allowed into the unit, we were ushered into a small conference room to wait to see the doctor.
My dad had a heart attack when I was in seventh grade. So, I’m been in hospitals quite a bit over the years. I’ve been there on several occasions when doctors have needed to give my family dire news. I know the language doctors use in these situations. But, what happened next was the most uncomfortable and tense conversations I have ever had with a doctor. It was more intense than the end of life discussions we had regarding my dad. I’m not faulting the doctor. I totally understand how difficult this type of work can be. But, I was surprised by how the tone of the staff had changed. Just thirty minutes before, we had been hugged, consoled, and reassured. Now no one was really telling us anything. We knew Koan had a seizure, but we didn’t know what that meant. No one was talking to us unless we asked a question. They weren’t even looking at us. Jarring is the best adjective I can come up with to describe the experience, but that doesn’t capture the intensity of the change.
The new pediatrician — there must have been a shift change in the short time we were away — would only stick to the facts. Gone was the tall, affable, compassionate doctor and in his place was a short, grim, taciturn man. It was like we had stepped into an alternate reality. He told us that a nurse had observed Koan having a grand mal seizure while we were driving to the Derr’s. This was extremely serious for a newborn child. This seizure was likely the result of a very significant infection — they were currently running blood work on him to see if this was the case. Or, it could be the symptom of a very significant congenital/developmental problem — he thought it possible that Koan might be missing a significant portion of his brain. We might have to wait for weeks in order to see a specialist at the University of Iowa’s pediatric neurology clinic to know if this were the case.
Neither of these theories was true thankfully. What we didn’t know until much later, is that children who have these types of seizures as newborns have over a 90% mortality rate. To be honest, I haven’t researched that assertion, but a pediatrician did share that with me later. But, that helps me understand why we were treated the way we were by the hospital staff. It’s a human endeavor and delivering that kind of news to new parents is soul wrenching.
Koan’s seizures turned out to be idiopathic in nature — meaning there’s no diagnosable cause. Or, as one of my all time favorite physicians, Dr. Andrew Peterson, so vividly explained — “idiopathic means that the idiots (the doctors) don’t know why.” But, Koan was having these seizures frequently. In retrospect, the “yawn” my friend had noted while we watched the football game was undoubtedly a seizure. Over the next few weeks and months, we would struggle to control the seizures. We also had to come to grips with what they were a harbinger to: developmental delays.