Lily is being transferred to Primary Children's Medical Center tomorrow. I have been very pleased with the care at St. Marks and have LOVED every doctor we have dealt with. They have been so proactive and encouraging about Lily's potential and future. Today the NICU attending was able to talk to Dr. Day our cardiologist at PCMC and they felt the best thing to do would be for Lily to make the trip up there and let Dr. Day evaluate and treat her PH right away. He may want to close her PDA depending on what happens. We also discussed placing a g-tube before she comes home. Best case scenario, we are able to get her PDA closed and it makes a significant difference in her PH and we are able to get a g-tube in and ensure we can get enough food into her, and that it doesn't take too long and she handles recovery well. That is a LOT to ask but I am hopeful. I am glad we are going. I feel like we are taking action and things are going to happen for Lily. I'm happy to be getting her the interventions she needs before she goes home and suffers for want of them. It's a bummer that she won't be coming home really soon, but hopefully once we GET home we can STAY home, and not rush to the ER every time she refuses a bottle and gets dehydrated and tired. And it's a little bit like going home again...wow...I'm a hospital mom AGAIN, and it's probably good we are going to the NICU where Charlotte never was, so we can ease our way back into the place without too many old memories.
So far Ella and Ava are doing well and I am hopeful we can work it out so I can spend time up at the NICU without neglecting them. Of course I'm getting a ton of help from grandparents which I am eternally grateful for. Hopefully in a few weeks we can reach our new normal with 3 happy girls at home. That would be so wonderful.