[Possible] seizure activity. Has been loaded with Phenobarb. Obtain head ultrasound and CAT scan as permitted and will obtain pediatric neuro consult today. Overall baby is in satisfactory condition although critically ill.
- Ethan's medical record, 2 days old
The next morning, we headed back to the NICU. The doctors were doing rounds. The hospital is a teaching facility, so students were going from station to station learning all about the babies and their conditions.
When we arrived, we were given an official rundown of the rules of the NICU. Only two visitors at any time by Ethan's bedside. We and our parents could visit at any time, but anyone else had to be accompanied by one parent. When passing by, we should never pause or look at the other babies. Never make eye contact with the families. The rules were all about privacy, respect. It was very clear that some of these babies were going home, and some were not. Some would spend a day for observation, some would be kept for months. We wondered which category Ethan would fall into.
The doctors stopped to speak to us. For the first time, we were told that Ethan had to be rescusitated at birth. He was born with Apgars of 1 (1 min), 1 (2 min), and 4 (5 min) . Very low. He had a faint heartbeat, but was not breathing or moving. The doctors had to perform full CPR to bring him around. It took 10 minutes to get him to a barely-passing score of 6.
The reason Ethan was so small was that his growth in the womb was stunted, causing Intra-Uterine Growth Restriction (IUGR). His IUGR was symmetric, meaning his head growth had been stunted along with his body. Later, I learned that the most common version of IUGR is asymmetric. Normally, under stressful conditions, the body growth slows in order to spare the brain. The baby is born with a closer-to-normal head circumference and a smaller body. Ethan's type meant his brain growth had slowed as well as his body.
The nurse was not sure, but thought she might had seen Ethan have seizures during the night. Seizures in newborns are very subtle. They can be as simple as a twitch, and unless you know what you are looking for, you could miss them. He was having "bicycling movements" in his arms and legs. She showed us one while we were there, but it looked like normal baby movements to me. She mentioned it to the doctors, and they scheduled a second head ultrasound.
The doctors seemed baffled by Ethan's condition. They asked me question after question about my pregnancy. Did I have any complications? Just high blood pressure. Did I have an illness in the last few weeks? I had a slight cold, just a stuffy nose. Maybe I had some sort of infection that had spread to the baby? I felt fine, so I couldn't explain that.
They mentioned he might possibly have a genetic disorder. They examined every inch of him, looking for signs. His ears did seem slightly low on his head, they said. And his neck was "webbed". I looked at his ears and neck. They looked fine to me. But combined with his bent hands and small head size, they wanted to be sure. They ordered dozens of labs to check for abnormalities.
We could not hold him or feed him. He was on IV fluids and seemed swollen. We stood and watched him for a long time. We talked to him, though we didn't really know what to say. At one point the nurse pointed out that he seemed to have more of the bicycling motions if we stimulated him too much. We shouldn't really touch or bother him too much. We didn't see the movements, but we stopped touching him anyway. We didn't want to hurt him.
As time went on, I was getting tired again. We knew there were family members who wanted to come down and visit, and they couldn't come in while the two of us were there. Jete brought me back to my room and started taking on the role of host to members of both of our families. I hardly saw him or Ethan for much of the next couple of days.
Late in the afternoon, Dr. F stopped by to see me. He asked how I was feeling and checked out my incision. Everything looked great. He had stopped to see the baby, and he said he was stablizing, so that was good.
He asked me if I had any sort of clotting disorder. No, not that I knew of. He mentioned that the placenta seemed to have a lot of clots in it. They had sent it off to pathology to be tested. He asked, maybe someone in my family had a clotting disorder that I didn't know about? Often people had a genetic disorder that they weren't even aware of. I couldn't think of anyone. He told me not to worry. Once the pathology results came back, we would know more.
After he left, I thought about what he said. Maybe I had a genetic problem that had caused Ethan to be so sick? Or were the doctors in the NICU right, saying he might have a genetic problem? Maybe, like Down Syndrome, it was a problem that was there since conception. An unlucky twist of fate. If so, no one could have known. There was nothing I could have done to change things. It wasn't my fault.
Or was it? I still had so many questions. Obviously the doctors did too. I tried to get some rest. We would know more in the morning, after his tests were done. He was stable and so far everything had looked positive other than those weird movements. They didn't look like anything serious anyway.
He was alive, I thought. After all he had been through, that was all that mattered. We could get through anything else.
NEXT: PART 8 - A NEW PICTURE
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