When residents and rounds change, in comes the new guard. The Doctor we loved had moved into a new group and we had a new one, Dr. X. At first, I could just tell we were not going to be friends. She was distant in the way that people who deal with the sickness and death of tiny babies must get. It was our 5th day there and I was prepared for the rounds. They discussed how much he ate, what his air was set to, all of his vitals. Each day as Josh had become stronger, they weaned his oxygen down. Dr. X was a turtle. She believed in the slow and steady pace. She knew what she was doing, but she was my enemy from the word go then.
Each day I would stay with Josh in the mornings until I had to pick up my son from school. I would leave and pass by Andrew’s parents, sitting and watching their baby, the way we all did. I always wanted to say something to them, but you just never knew how. Each day new babies would come in, some babies would stay a day, others became permanent residents like us. My Mom would go to the hospital from 1:00-4:00pm each day. I would stay home and when my husband came home we would drop our oldest off to my parents and drive the thirty minutes back to the hospital.
We were so very lucky. We had amazing help from my parents. Without them, nothing would have been possible and Matt would have had to take a leave from work. I would never have been able to function. I was also so blessed to have my friends. They organized dinners every other night. I never had to cook. There would be a different friend at the door holding gifts and dinner, ready with a hug. They took my calls at all hours, listened to me tell them the medical jargon. They came to the NICU and cried over Josh and smiled down at him. They were my backbone, my salvation in a time when I felt so lost.
We had been there a week when my Mom called with her afternoon report. A new baby had come in the NICU, but did not tell me that they moved Josh. That night I walked in to find Josh gone. My blood ran cold and a nurse came flying toward me, pointing to the back, where Josh’s isolet stood alone in the best seat in the house. He had taken over “the suite”. Josh had a spot in the back all alone which gave us the best “room” in the place. No one was around us so it felt like a private room My brother was coming up with me that night to give his new Godson a bath and he was so excited to see him again.
We had just started the process of getting Josh ready for a bath and Josh loved it. He loved giving us smiles. The Doctors would tell us that is called Involuntary Infant Response, but we knew the truth. Josh smiled all the time. We had taken Josh’s clothes off, taken his temperature and were weighing him when we heard a nurse coming toward Andrea saying “We need to clear the NICU, now!” Andrea turned to us and took Josh and told us we would have to leave. She told us to come back in a half an hour.
We did not look up. Our eyes were glued to the new baby they brought in. He was surrounded by Doctors and nurses. Machines were going crazy. Something was very wrong. I willed my legs to move, but my eyes never left the scene. We passed Andrew’s bewildered parents as we walked out. Familiar strangers, we asked one another what could be happening. My brother and I headed down to the cafeteria for a soda and to wait.
We returned a half an hour later to find the East NICU closed. We had never seen it closed before. Whatever had happened, I had a very bad feeling that the baby had died. We got our coats and started the long walk back to the elevators. We turned the corner and far in the distance the elevator’s doors opened and the very worst moment in my life was awaiting me.
Coming out of the elevators was the saddest group of people I had ever seen. A woman was in a wheelchair, her pink gown proving to me she was the mother of the baby. She was sobbing. Her cry cut through my soul. It was much more of a howl than a cry. Her husband was pushing her and their parents were walking behind him. Next to her, holding her hand, was the kind neonatalogist we had just been joking with a couple of hours before. Her baby had died.
Each step toward her was the hardest thing I had ever done in my life. We were at least one hundred feet from one another. The sound of her wailing made me feel as though I wanted to die. The sheer amount of guilt made it difficult to breathe. I was drowning in it. I knew if I looked up, I would fall to my knees in front of her, wrap my arms around her, beg her forgiveness for having a baby that had survived. Once she had mercifully passed, I broke down. It was the beginning of a very bad time for me and that moment had simply unlocked the door.
That night I could not stop the voices of doubt in my head. I saw tiny coffins. I wondered where you bought them. Did they have preemie coffins? Where was his body? The morbid thoughts would not stop slamming through my head. I had to take a pain pill just to sleep, but the dread was alive and well in me. The next day I stopped on the 9th floor to see my old nurses. I told them what happened, but they already knew. They could not say anything about a patient, but it was in their eyes and I knew instantly she had been up there with me. She could have been in the next room. We could have talked if we had been able to leave our beds. She could have been me. The odds were that one of our babies would not survive. Why was she chosen? That could have been my son.
Walking into the NICU that day, seeing his empty space, it was almost more than I could bear. Josh’s sweet smile brought my heart some joy. He ate every three hours through a feeding tube that run through his nostril, down his throat and into his stomach. The tubes usually run through the mouth, but Josh made sure that we all knew just how much he hated in his mouth. Requesting that it not be in his mouth was one of the very few things I could control as his mother. Decisions about Josh were all up to Dr. X.. Eager to feed him a bottle, I asked one day during rounds if she thought he could have one. She said no. He had to be off all antibiotics and able to breathe without any support before she would give him the green light, even though other patients who were followed by nurse practitioners were having bottles. I watched with envy as Andrew’s parents fed him a bottle.
That night when Josh’s stomach felt strange to Andrea, she called the nurse practitioner over to feel it and they discussed his readiness for a bottle. The NP said to give it a try. We were so excited, but Josh promptly threw most of it up and that night began to have episodes we would know as bradys. Bradycardia is the heart rate of the baby dropping. This is usually in combination what is known as de saturation of oxygen, which is when the baby essentially stops breathing. When the pulse ox falls and the heart slows, alarms go off to notify the nurse that the baby is in trouble. Some stimulation is often required to startle the baby into breathing again. In bad situations, the baby may turn blue and require oxygen. I am lucky enough to not know if this was ever the case with Josh.
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