Today is Charlie’s CPAP removal anniversary. Last year, Charlie was taken off of CPAP and put on a high flow nasal cannula. There are so many things I remember about that day. Mostly, I remember the emotions of excitement, joy, and even a little anger.
The day before she was removed from CPAP, I had spoken with a neonatalogist. He provided a time estimate for Charlie’s progress. He said that it would be about a week before an attempt was made to move Charlie to a nasal cannula. He wanted to be sure that she continued to gain weight and not waste calories on breathing. I left that evening with a plan to return late the next night for a short visit.
My husband and I avoided the other babies’ weekend visitors by visiting at odd hours. We had more privacy and the nurses were more available when we visited during off times. That Saturday, we arrived late in the evening to a nearly empty NICU.
After performing the scrubbing and sanitizing ritual, I marched up to Charlie’s isolette and threw back the blanket covering it. Her CPAPless face was peering back at me. Surprised, I jumped back. “They must have moved around the babies again”, I muttered to my husband. On a few past occasions, they had shuffled the babies around and did not mention it until I could not find my baby.
I looked around for a nurse to guide me to my baby’s new location. No one came hurrying over to show me where my baby was. Confused, I looked at the name plate on the wall and the charts. It was our name. However, I was sure this was not our baby. Our baby wore a CPAP mask and hat. I started to panic.
My husband placed his hand on my shoulder and quietly said, “I think she got her CPAP mask off today.” Finally, I realized that the mystery baby laying in front of me WAS Charlie. I put my head in my hands and started sobbing.
Up until then, it was too much to hope that she would make any forward progress. For two months, I had become accustomed to the simple wish for minimal backsliding. I was so used to complications that I had not dared to dream of the possibility of Charlie improving.
That evening was the first time that I felt there could be an end to Charlie’s NICU stay. It was the moment that it occurred to me that “this too will end”. I felt a mix of relief and happiness. I was overwhelmed.
The float nurse made her way over to us. I asked her why nothing was mentioned to us concerning the cannula. She explained that often parents are not told that they are going to try such measures. Sometimes it is done to spare parents disappointment if the attempt fails and other times it is just an oversight.
Hearing the explanation made me angry. Who are these people who determine that I need to be treated like a child? Why do they get to decide what I can and can not handle? If the doctor forgets to mention something this big, what else are they not telling me? I did not feel as if I was a participant in Charlie’s care (something that NICU parents are constantly reminded to be). I felt like I was being pandered to or pacified.
Although the anger affected my future trust with some of Charlie’s health care team, I did not let it ruin our evening. We held Charlie, doted over her, and took pictures. That night was the beginning of the end. Ten days later, Charlie was transfered to a different NICU as a feeder-grower.
One of the nurses put the bow in Charlie’s hair. This is how I found her in the isolette.