The day I was discharged I wanted to run, fly, teleport over to the hospital Sage was at. My husband instead sent me to bed. I was in bad shape physically and honestly, he was looking out for me. All I could think about was my baby alone in a strange place. I had an idea what the prognosis was but hadn't seen it for myself. I held on to that little glimmer of hope. After calling the NICU nurses a few times and a small nap we made the trip. I remember seeing her for the first time in the isolette, so small and hooked to an EEG cap. I looked at the EEG monitor and knew what the reality was. Here was my darling little girl, pink, plump, and perfectly sleeping. Her monitor lines were flat....no activity. A neonatologist I had never met came over to say "there is no brain activity", and walked away. I wasn't sure if I wanted to be horrified or thankful for the blunt news.
Honestly, I can't remember if it was that night or the next day that we looked at eachother and knew we had to ask for organ donation and hospice. I asked our nurse Linda to make those arrangements. She said she wasn't exactly sure how that all would work but would certainly do her best. This was our first glimpse into our week long journey to help Sage fulfill her purpose. That was Tuesday. Wednesday we met with the first coordinator from our local organ procurement organization. They were wonderful and supportive. The nurses also were quickly becoming family. They dressed Sage and encouraged us to spend as much time with her as possible. It meant so much to hear them talk to her and call her by name even though we all knew she was gone.
We had some concern that her organs weren't going to be viable. Her kidneys were not producing urine the way we would have liked and her liver was very sluggish. We decided to have a little talk with her. We told her that she needed to pick it up if she wanted her plan to work out. We needed a little time and she needed to give it to us. She did. Within a day she had fully picked up her kidney and liver function. The only thing to get more "touchy" was her respiratory status. Maybe it was tube placement, maybe it was her not wanting us to hold her too much, but whenever we held her too much she would decompensate quickly. I became the overprotective mom...with a slightly different goal.
Things started to fall into place for donation when we were hit with a bombshell. We were told that the hospital and OPO had conflicting views about how to declare brain death. Did we ever think that we would be upset that they couldn't declare our daughter brian dead....no, but we did now. Finally after another day of the physicians researching what could be and should be done to declare, we were told that the problem was the massive amount of Phenobarbital Sage had been given right after birth. Due to her age and size of liver, the drug was just not clearing her system fast enough. We were told that her level had to be sub-therapeutic to make the declaration (15mg) and she was at 27mg. approximately 2 weeks to get down. We didn't have that much time. Donation was on hold, possibly cancelled completely.
I was at home the afternoon my mom called me. She said, "there has to be a way to get it down faster. There has to be a drug they can give to clear it out. This HAS to happen." I told her to give me a minute. Divine intention was at work in my computer that day. The first result page that I came to gave up a study done here in Florida at Shands hospital. Neonatologists had given activated charcoal to severely brain damaged neonates to clear nothing other than Phenobarbital from their livers to do nothing other than declare brain death. Mind you, this study was done in 1990. So almost 20 years ago researchers figured out a way to do what we needed to do but nobody knew about it. I called my mother almost bouncing out of my seat. I told her the name of the article, researchers, and journal it was located in. She went to the neonatologist on duty and basically begged her to read the study. She called me about an hour later in tears saying that the physician read the study and had ordered the first dose of charcoal. We were on our way.
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