Kind of a strange day today. Lily didn't eat as well and her oxygen got turned up a little bit. When Zar called with this information around lunch time my dad took my girls to run some errands and my mom and I went to the hospital. Lily was awake when we got there and ready to eat, and ate pretty well for me, only needing 20 mls through her tube. She was snuggly and sweet and we were talking about how much bigger and stronger and more active she is than Charlotte was her age.
I also talked with the doctor and was very comforted by what she had to say. She wanted to know whether or not we were going to "treat" Lily, and I said we were. She said that her pulmonary hypertension did look a little worse than it had at birth. She wanted to start treating her pulmonary hypertension right away and was going to call Dr. Day, her cardiologist, and discuss with him initiating treatment. We talked about maybe transferring Lily to PCMC and having her seen by Dr. Day in their NICU and finishing her hospital stay there. We also discussed placing a G-tube sooner rather than later to help her be as healthy as she can be. She said she felt Lily was doing very well and seemed happy to provide her with any and all cares and treatments she might need to reach her fullest potential. I love it when doctors have that attitude and I really liked this doctor. After discussing it with Zar we are starting to feel like we should transfer to PCMC and get things done rather than coming home, struggling, getting colds, and then trying to go back over the holidays and catch up when we can do things now.
Anyway, I was feeling great about everything and excited, strangely, to start on this journey again and get Lily started on the best, healthiest life possible. When we got home there was this little butterfly on the brick wall of the house which has always been our little message from Boof since she's been gone, and I felt like things were going well.
When we got home tonight I had Zar call to check on Lils before I headed off to bed. The nurse said she was doing fine...but that she had turned up her oxygen a bit more. When she told us how much we felt like it was a LOT more, and maybe we should have been called if her oxygen needs had really increased that much over the last few hours. The funny thing was the nurse didn't seem to think it was a big deal at all. I don't know if Dr. Day suggested we turn up her oxygen to keep her at 100% saturation or if she was just doing poorly and the nurse turned it up at her discretion. I don't know if she really needs that much oxygen or if we just have a nurse tonight who always turns kids up. She is on more than double what she was when I was there earlier however.
Zar went to go see her and see what he can find out. I'm scared all over again. The roller coaster is the hardest thing about this--and the highs are so high and the lows are so incredibly low. A few hours ago I was bummed that Lily wasn't coming home in the next couple of days but happy that she was doing well and maybe was going to get the feeding tube that Charlotte waited years for, that made her life so much better. Now I'm sitting on the couch at 11:30pm wondering if I should get ready for bed or if I'm going to be rushing up to the hospital tonight to be with Lily.
Zar is having a hard time with the fact that Lily has spent her whole life in the hospital and has spent so little time in our arms. He worries that if we decide to pursue g-tube surgery and other treatments now she will spend weeks recovering in the hospital and may never spend any good time at home. I know that is a legitimate fear but I told him our goal is to get her healthy and home and keep her home, which is much easier with a g-tube and the right meds. Hopefully we could spend a wonderful holiday season with her making memories with our little family. At home. I was saying those words just two hours ago and now it all seems to have slipped away again.
I know it's unlikely anyone will read this until tomorrow when things could be totally different again, one way or the other. But regardless of which way they go, we could use your prayers.