I am so grateful for the girls that Heavenly Father gave me. He called Amy Lynne home early. (for my family, you may not want to read this one. Especially Jeri. Stop now!) I usually don’t really talk about Amy Lynne. Not because I don’t love her, but because it still feels so fresh. She would be 4 this October. She’s been gone now for 3 1/2 years now. I miss her so much. It sometimes feels like a dream. She was with us for a very short time. Just 10 weeks, 5 days. 75 days. 108,000 minutes. As much as I joke around on this blog, I wanted to write what I remember of her last day on this earth with me. With her family.
I knew her time was short. We were at Children’s Hospital. They had a rule that parent’s whose children were in the NICU weren’t allowed to sleep in the same room as their children. They all had glass walls, they did have curtains for privacy, but they liked to be able to look in at all times if family wasn’t there. So we had to sleep in these little rooms that were literally for sleeping in. They held a twin bed and a little bedside table for a lamp and a phone and a tine closet to put your stuff into . All in all, it was about 5 feet wide by 10 feet long. Enough for one person.
I was woken up at about 5am. Amy Lynne’s body temperature had dropped. She was back on a warmer instead of a crib. At this point, she was hooked up to the vent and she had a tube up through each nose. One lead down into her intestines to feed her and the other stopped at her stomach to suck out the bile that gathered in there. I have a couple of pictures of her but will never share them. They are too intimate and private. I haven’t looked at those pictures in a couple of years. There is no need to, the image is burned into my memory.
So after they called me to tell me that they had to put her in the warmer, I got dressed and went down there to be with her. I knew in my heart that this was the day she was going to die. I got a chair and sat next to her and talked to her for a while. I didn’t call Benjamin just yet, I knew he needed some sleep. I spent a couple of hours sitting next to her, touching her hair, feet, hands. Her hair was so soft and curly. Deep deep red. Burgundy almost. I went out and listened to rounds when they got to Amy Lynne.
After that, I called Benjamin and told him that after he took the girls to school that he needed to come to the hospital and be with us. This was about 7:30 when I knew he’d be up. After that, the nurse got her settled in my arms where I held her and rocked her. I called my mother and told her that today was the day.
Benjamin came to the hospital around 9:30. He held her. I remember the doctor coming in to talk to us. She was the one who had the “lucky” job of telling us that Amy Lynne had suffered a stroke. That she was surprised that she had even lived this long. That she didn’t die in utero. She’s the one who had to tell us that Amy Lynne was terminally ill. We talked about pulling her off of life support later on that day. She left. Benjamin rocked our daughter while I sat right next to him so I could touch them both. About an hour later, her sats started to drop. They turned the vent on as high as they could. It sill wasn’t working. They had to bag her. Being this was Children’s and they knew as much as we knew this was her last day, they kept her in Benjamin’s arms.
At that point, I remember calling my mother. Frantic that they wouldn’t make it to the hospital fast enough. I was so frantic because I didn’t want her to die with just me and Benjamin. I was too selfish. I couldn’t handle it. I remember praying that she wouldn’t die until my mother got there.
She got better and they put her back on the vent. I remember the day before a respiratory therapist came in and was talking to me. She told me that they could keep babies alive for a very long time. That usually it was the parent’s who couldn’t handle them dying so they prolonged their lives. I thought about that as they had to bag her that day. They CAN’T keep babies alive for as long as they want. I think they sometimes forget who is really in charge. If Heavenly Father wants them to come home, no amount of vent settings is going to keep them alive. I was seeing proof of that.
I was also afraid if she died before her sisters got to see her. They got to hold her a total of 1 time while she was alive. If I’d have known that she wasn’t going to live very long, I would have them hold her more. I thought we had all the time in the world and that they could hold her once we brought her home. Here is a picture of them holding her on Christmas Day. That is a preemie dress she’s in. (We found out the day after that she was terminally ill)
I called frantically to my friend Maureen asking her if she could pick my girls up from school so they could say goodbye to their sister before we took her off of life support. The doctors told us that with how sick she was, that she wouldn’t live past about 30 minutes. Bless Maureen’s heart, she brought the children to me. Only an hour had passed since they had to bag her and I had called my mother and Maureen. I know Heavenly Father heard my prayer, she was better and they were able to put her back on the vent. My mother came. Lauren and Kathryn came. This was around 11:30.
Benjamin was still holding Amy Lynne when Lauren and Kathryn came in. We had already had the “talk” with them. It had only happened the night before. They knew she was going to die. They were crying and so worried. The good/bad thing about Children’s is they have on average, a baby die about every 10 days in their NICU. The social workers came in and talked with Lauren and Kathryn. As they were leaving, Amy Lynne lifted up her arm as though to wave good-bye. It was eerie and I know that it was very intentional.
They had some fun toys and booklets that people had donated for them to have. They took them out and let them draw on these bears that were “in” back then. I can’t remember what they’re called. They also had some stuff for them to color. I think it was for them to express what they were feeling losing their sister.
Jeri was there by that time, my parent’s were there and we took some last pictures of her. Pictures of us with her. Some video footage that to this day, I’ve never looked at. By this time, it is around 12:30 or so.
Ah, the emotional drain. I’ll finish the rest tomorrow.