The next morning I got a call from a doctor in the NICU. He reported that Crew had a rough night. Initially, the staff decided was doing well on the vent and he didn’t need it anymore. Without weaning him off, they took him off the vent and he crashed, he stopped breathing. They basically had to bag him or resuscitate him to get him going again. And then the seizures started. When the doctor told me this I really didn’t “get” what he was saying. Over the next few days, months, and years it has really settled in and I just don’t understand how this mistake could be made.
Carl and I went up to the NICU that morning and the doctor pulled the curtain around Crew’s little isolette and gave us the talk. She talked of seizures, mental retardation and possible CP. I hated her! She kept repeating the same thing over and over. She asked us if we had questions and I was just stunned. It was all so overwhelming that I didn’t even know where to start. I didn’t even know what to ask.
The next few days were a blur. We spent many hours standing beside the isolette. Carl made a trip in each morning before work. The nurses reported that he would read Crew stories, Hop on Pop, Green Eggs and Ham, etc. They were impressed as they had never seen a dad do that before.
On day 5 they decided Crew was finally stable enough to do an MRI. I had a hard time getting info from the doctors throughout that first week as I was learning that I needed to be more assertive. Finally, during the evening of day 5 after several attempts at contacting the Dr. he called me at home. I will never forget where I was when he called. I had just sat down to “pump” and Carl was at work. This Dr. reported that the MRI showed “significant” brain damage in many areas of the brain. I asked where and how it would affect Crew. He told me that it could affect his movement, thinking, body temperature, swallowing. I couldn’t believe what I was hearing. This information was more than I could take at the time and I was upset that I had to hear it over the phone.
Finally on day 6 Crew was taken off the vent. When I arrived at the hospital and saw that they had removed the ventilator, I was thrilled. He was still being tube fed but making progress. When Crew was one week old I was able to hold him for the first time. I was physically exhausted at that point. They laid him in my arms and the warmth of his little body and the peace and comfort I felt was relaxing. I immediately fell asleep.
The next two weeks were mostly uphill from there. When he was 10 days old Crew graduated to the “stepdown” NICU. This is a separate room where babies don’t need the vent anymore but are still learning to eat. They still need to be monitored. Most of the babies were preemies and needed to be fattened up. The nurses were great and the babies in there had nicknames. They named Crew, “THE MOOSE” because he was so large compared to all the preemies.
To this day I am so thankful for the positive nurses and therapists. Our wonderful, OT, Annie gave me hope. After all the speculation regarding Crews ability to suck and swallow, Annie stood up and declared, “What are you talking about that he can’t suck.. “ and she pushed her finger into his mouth and said “HE CAN SUCK!” Annie was with me that first day that I tried breastfeeding Crew. She showed me all the tricks and she rejoiced with me when he latched on during my first attempt. He was a pro!
Dr. Nance was another optimist that made a difference. One day during that first week in the NICU Nance stood beside me as I peered into the isolette, put his arm around my shoulder, and talked about the amazing brain. He talked about how even when brain damage occurs in an infant the brain often has a way of creating new pathways. The probability of an infant or small child to recover from something so traumatic is significantly higher than that of an adult.
Another positive experience occurred when two of my good friends visited. I believe it was the first day. Crew was hooked up to a high powered ventilator (I can’t remember what it was called). This loud machine was needed to force air into his little lungs and this caused Crew’s entire body to shake. Watching it was quite disturbing! My good friend, Cameo, commented that she imagined a host of angels surrounding his bed cheering him on. I had never thought of it like that before and so I really appreciated her comment.
On the weekends we were allowed to bring the other children with us. Being together with all of my boys was a special treat. They each got a chance to hold Crew and read more stories.
Over the next couple weeks Crew continued to improve. After 3 weeks, Crew was able to come home. His progress was steady and quick! We were thrilled. He came home without wires and without oxygen. I was breastfeeding him 100%. The day was a special one and I’ll never forget how happy I was to have him home just in time to celebrate my birthday.
The days of the NICU proved to be life changing emotionally and spiritually. I had several spiritual experiences that have altered who I am today. I know that during these hard times, we are not alone. I’m so thankful for that!
