Because Andrew was so weak and lethargic, the hospital set me up with an electric pump and had me express milk to feed him from a bottle. Sometime during that first day or night, one of the monitors in the room started beeping loudly, and within seconds, a nurse appeared in the doorway and said that the baby’s blood oxygen level had dropped too low and told me to rouse him.
I obediently picked him up, placed him on my chest, and started bouncing gently and patting his back, not sure if this was the correct procedure or not. It worked, and we watched as his blood oxygen climbed from below 85% to up above 95%. I laid him back down, thinking it was just a one-time occurrence. But then it happened again. And again. And again. It happened almost every time I laid him back down after feeding him. Before long, I learned to watch the monitor after I fed him, ready to spring into action and rouse him if the oxygen saturation number dropped too low. It also started to happen while he was sleeping, long after he had finished eating. The pediatrician consulted with a neonatologist, who explained that it wasn’t uncommon for very young babies to have poor blood oxygen levels after eating, because they were still learning how to coordinate their muscles in order to breathe while eating. He sounded unconcerned, but his explanation didn’t account for Andrew’s blood oxygen levels falling while he was sleeping.
One of my sisters-in-law, who had a son born with a heart defect that had caused low blood oxygen until it was repaired, was convinced that I needed to push to get Andrew’s heart evaluated. I agreed with her and nervously awaited the doctor’s rounds on the morning of our third day in the ICU. I am an extremely soft-spoken person who often communicates indirectly and through understatement, someone who would rather tolerate discomfort than make someone else uncomfortable. But I was determined to effect a drastic change in my son’s treatment, and I knew I was not going to rest until I got my way. The anticipation of needing to act so out of character was a form of mental torture, and I prayed desperately as I nervously waited for the doctor. As it turned out, I didn’t need to do anything to convince him that Andrew needed further evaluation.
I was bottle feeding Andrew when the doctor came into the room. He asked how the baby was doing, and I steeled myself for the confrontation that I thought was coming. I explained how his blood oxygen levels kept dropping even when he hadn’t eaten recently and said that I was really concerned about him. The doctor immediately admitted that he was concerned too. And then it happed. Andrew’s blood oxygen dropped so low that we didn’t need the monitor to tell us he was in danger.
His face turned gray.
The doctor sprang into action, and before I knew it, a team of respiratory specialists rushed into the room, taking the baby from me and connecting him to oxygen. The doctor immediately started the process to get Andrew transferred to the newborn ICU in a large hospital in another city. Up until now, Andrew had been in a normal ICU, since the small hospital where he was born didn’t have a special ICU for newborns. I called my husband, and he found someone to watch our other kids while he joined me at the hospital, where they were readying Andrew for the transfer. It was a complicated process because of all the monitors and the oxygen he needed, but in a relatively short amount of time, I found myself in our loaner car with my husband, following Andrew’s ambulance, which said “Mobile Intensive Care Unit” on the back, to the other hospital.
We weren’t allowed to accompany Andrew from the ambulance into the hospital. Instead, we parked in one of the numerous visitor parking lots and had to find our way through the hospital on our own. There was a reception desk at the entrance to the newborn ICU (NICU for short—I quickly learned that all hospital staff and the families of the babies simply referred to it as the “NIC-you”). There we were introduced to the extensive security and safety measures put in place to protect the very vulnerable patients in this part of the hospital. Every visitor had to sign in by filling out a ledger where they indicated the date, time of day, and their name, which the nurse checked against their photo ID and a list of the people who were authorized to visit the babies. When they left the ward, they had to sign out. After signing in, we had to disinfect our cell phones with an antimicrobial wipe and then disinfect our hands with hand sanitizer. (I know that this would all seem pretty routine now, but you have to remember that this was before COVID.) Only then were we allowed to progress into the ward. The nurse directed us to a comfortable sitting room, complete with children’s toys for the older siblings of the babies, to wait for Andrew’s neonatologist.
I don’t know how long we waited, but it felt like a long time. When the doctor finally appeared, we learned the reason for the long wait. They had been testing Andrew for every problem that could possibly be causing his symptoms. They had already ruled out a heart defect and brain abnormalities, and they were waiting for the results of the tests for possible metabolic problems. In the event that there were no metabolic abnormalities, the doctor explained that Andrew probably had an infection that was affecting his lungs and causing respiratory distress. He said that sometimes a baby will have symptoms of an infection without the lab being able to identify the specific microbe causing the problems. In cases where all other possible causes of illness are ruled out, he had found that treating the baby with antibiotics usually caused the symptoms to resolve. When Andrew’s lab tests eventually came back showing that he had no metabolic abnormalities, this was the exact course of treatment the neonatologist prescribed.
After speaking with the doctor, we were allowed to go to Andrew’s room and see him. The halls of the ward wound around the sitting area, a snack room, and a cozy dining area. Because of this layout, it felt disorienting to find Andrew’s room, which was tucked away into a corner about halfway back into the ward. Andrew looked very similar to how he had looked at the other hospital, lying perfectly still with his eyes closed and all kinds of tubes and wires attached to various points on his body. However, I noticed that he was wearing different clothes and wondered what kind of ordeal he had gone through without me beside him to offer comfort.
Andrew didn’t need any immediate care, so I started to settle in. The room felt larger than Andrew’s room in the other hospital, and it was very cozy and inviting. In addition to Andrew’s bassinet and all the hospital monitors, there was a recliner and a couch that could be separated from the rest of the room with a curtain.
Since I had indicated that I would be breast feeding Andrew, the hospital set me up with an electric pump and gave me a detailed schedule of Andrew’s feeding times and how much he needed to have at each feeding. They also gave me vouchers to use in the hospital food court, their way of contributing to his nourishment. It wouldn’t be enough to cover all my meals, but it would help.
They had inserted a feeding tube down Andrew’s throat, because they had needed to increase the flow rate of his oxygen. A nurse explained that because of the high-flow oxygen, he could choke if we tried to feed him with a bottle. The nurses offered to feed him themselves, but I wanted to do as much to care for him as possible, so I learned how to heat the milk to body temperature, fill a syringe, and squirt it into his feeding tube.
The hospital had a complimentary guest house for families of young patients from out of town, and on the advice of a NICU nurse, my husband went to see if they had a room available for us. I didn’t see the point, as I had no intention of leaving my baby’s side unless absolutely necessary, but my husband thought it would be a good thing to have, and it turned out he was right. After getting the keys to a guest room, he headed back to the lake house to take care of our other children. Andrew and I were alone in an unfamiliar and somewhat intimidating environment.
Read Part 4 here.
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I would be honored to have the privilege of encouraging you on a regular basis!