I'm not sure how long we spent in that hospital room saying goodbye. Afterwards we walked back to the NICU and the thought kept going through my mind "I can't watch her die." It was very confusing to grasp the idea that she was there yet she wasn't. Throughout the day I kept asking the same kinds of questions to the doctors. Will she be scared? Will she be in pain? Every time they looked at me with pity and reiterated that she was completely unaware. In my mind when I gave her back to God her spirit had left. We believed the doctors who said her body would follow soon.
I can't help you understand what happened next because I don't understand it myself. I think a lot of people going through traumatic things make decisions that they later cannot account for. I was not in my right mind.
All I knew is that I couldn't stay there one more second. We told the nurses we wanted to leave, that we didn't want to watch her die and they said they would call us and tell us when she was gone. We walked through a waiting room filled with people who loved us and I watched my husband sob and cling to his mom and sister. At that point I felt numb. I was deep into my own world, detached from everything around me. We went home with our memorial box of pictures and the blanket Lexi had used in the hospital that smelled like her expecting a call from the hospital at any time.
It was Valentines day. When we got back to our apartment the first thing I did was close Lexi's bedroom door and Daniel flinched. We went to bed. Each of us had a picture of her by our side of the bed. We held each other and cried ourselves to sleep. A couple hours later we woke up to Daniel's phone ringing. We both thought we were getting the call that her body had passed.
The call was a doctor asking us if we wanted to put a feeding tube in Lexi. We asked if her status had changed and we were assured it hadn't although she was breathing well on her own at the time. Daniel told him we did not want a feeding tube. The Dr. said instead Lexi would be offered milk from a bottle "knowing" she would not be able to drink it. I said they should use the breast milk I had pumped and then felt overwhelming grief and disorientation at what was happening. I had the thought that I was crazy for wanting my brain dead baby to be offered breast milk. I remember bitterly telling Daniel, "This is a nightmare that won't end." Once again the Dr. assured us he would call when Lexi passed. This time he said that it could be a couple hours or a couple days.
The days passed. I was experiencing a complete mental breakdown. All I did was cry and sleep and stare at nothing. It was hard to form coherent thoughts or prayers. I talked to hardly anyone. Daniel fielded all calls from the hospital. Every call was the same. No change. It could be any time. Since neither of us were communicating with the outside world and we were at home many people thought Lexi was dead.
Of course during that time we thought about going back to the hospital but it felt hopeless. We could do nothing to change the outcome and Lexi wouldn't even know we were there. It seemed like we would be torturing ourselves unnecessarily. I also had an unreasonable fear of seeing her dead. In jr. high I had seen my grandfather being taken from home after he died of cancer and that memory was something that still haunted me. I didn't want to think of Lexi that way.
Five days passed and someone had given us their time share to go to the Oregon coast for the weekend. The second night at the beach I had a dream that Lexi was starving to death. I woke up and secretively hid in the bathroom at 2 in the morning to call the hospital.
I spoke to a nurse who told me Lexi had taken some food from a bottle on Wed. but not since then. At which time I freaked out. It was like I was waking up after a week of being in a trance. I was angry and I wanted answers to understand why nothing was happening as the doctors said it would. By this time Daniel was up and we called the Neurologist together on speaker phone. It was one we hadn't met before. He said that nothing had changed. She was still brain dead but her brain stem which controls basic organ function was intact. That's why she was able to breathe on her own. He said she might have reflexively swallowed when food was in her throat once but she wasn't really eating.
He told us we might have to start thinking about what we were going to do if things continued to go on for longer than what they considered a reasonable amount of time. We weren't there yet but it was obvious that Lexi was stronger than they expected. Once again I asked the question I already knew the answer to. "Would Lexi know if we were there with her?" The doctor answered differently this time, with the exact words I needed to hear. "I think the right question to ask is would you know you were there?"
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