"I lift my eyes up to the hills. Where does my help come from? My help comes from the Lord, the maker of Heaven and Earth!"
I'm sitting in Hope's room tonight, our roommate from last night was taken into ICE, and we're all alone. I've chosen to take advantage of the rare opportunity of having the room to ourselves. We got a little CD player for Hope to listen to music. I'm laying here listening to a mixed worship CD that someone made for me months ago. As I thank God for all the wonderful things he's done in our lives, I'm overwhelmed. He has sent the most incredible people to make our burden lighter. In that moment my nurse walked in and named the band. Another person next to Hope that loves Jesus and believes he can heal her. Beautiful.
Every day I am reminded that God is doing more than I know. If I knew the full extent of what he was doing in our lives, I would be too overwhelmed. This journey is not easy, some days I don't think I'll make it through. I'm learning that I can't do this, I'm not strong enough and I love Hope too much to not feel the pain of watching her suffer. When I reach my lowest point, I realize that I'm not surviving and I'm not strong. It's in those moments that I see God, I see evidence of Him moving through Hope's life and I feel privileged to be apart of it. In those moments the burden is lifted and I realize that all I have to do is love my girl, I'm really good at that.
This morning was a bit crazy. The baby we roomed with overnight was not doing well. She screamed a lot and was clearly in pain. After 4 straight hours of screaming in the morning, a whole team of doctors were around her and decided she needed to go to ICE. I ached for the family and especially the child. By the time things had settled and the cardiologist got around to Hope, it was after 12.
While I waited for rounds, I had a meeting with the liver specialist here. I was encouraged after I spoke with him. I've been worried about Hope having to transfer back to the GI team in Calgary eventually. If her fluid remains after the next surgery (something they feel strongly will happen), I don't want to leave the GI team here. We had such a poor experience with GI in Calgary and it broke my confidence in them. The doctor here assured me that my experience would be better with the liver specialist there and promised to personally refer Hope. My mother heart breathed a sigh of relief. He shared that Hope's clot in the liver could cause her to have internal bleeding. This would be pretty bad and gives us another specific thing to pray against! We talked about a lot of specifics for the 3rd surgery as well. It's a lot of medical specifics and I won't bore you. As for the Glenn (2nd surgery), I asked him what he thought about her having it. He said that he was totally in support of her having it and felt that she would do decently well, although she would struggle more than others would. In that moment, I felt hope for our Hope and felt more confident for the meeting on Tuesday.
When they finally rounded on Hope, the doctors were happy with her current condition. They took her off one of her heart meds. I still find this unnerving, but am trusting them in this decision. She is on less oxygen and seems to have more energy. They agreed to let me take her out for the afternoon! It was so nice to have her at the house with the family. Volunteers came in to make a thanksgiving dinner for everyone, it was great.
Hope is now on her regular feeds that run every 3 hours. She has tolerated them amazingly and appears to be doing well on more formula, only one more day with breast milk. Thank you for praying and for having a huge part in her life. Be assured, when our sweet Hope turns one, I am going to throw a party to celebrate the miracle of her life. You are all invited, I mean that.