This weekend has truly been a weekend in many ways. With the help of others, we've been able to avoid crazy early mornings, spend quality time with Sadie, go to church this morning and run errands with the rest of the world on the weekend. We accomplished a fair amount and feel slightly less burnt out than we have been feeling.
Hope is still tolerating the pure breast milk and has not thrown up for probably 48 hours. As a result, the doctors have decided to try lowering her heart meds over the next couple of days to get her back to 5 mg instead of 7.5 mg. I personally feel this is a waste of time and that we'll need to go back up on the meds as soon as they try to concentrate her feeds. The meds are not good for Hope long term, so I'm trying to be optimistic and believe that this is possible. We all know that I'm fairly sure it will fail and she'll be back up to her current dose by next weekend. Please pray that I'm wrong.
Our house is starting to feel more like our home and Sadie's room is finally dark enough to keep her sleeping in the mornings. Things are finding their new places around the house and all of the boxes have officially been unpacked. We lose possession of our old house on Friday and need to figure out a way to remove a few of the things left there before then.
I was sitting in our living room this afternoon looking around at all the "stuff" we have in life. It's amazing how when you want your child to have life, nothing else seems that great. I still think it looks better when we have curtains up, or after the couch arrived, and I certainly notice when the boxes are off the floor. It's more that as I sit in the room that I worked to create, I realize that I'd give up everything and anything to have Hope in my life. I would give my house, our car and every penny we have in the bank to the donor family if that's what it took. In a lot of ways it's more difficult to wait for the Lord's provision. Yes, he is going to bring us a heart without taking everything we have, but he's going to do that in HIS timing and not mine.
Hope has been more cuddly lately and is now willing to sleep in your arms as you hold her. This is something I deeply enjoy, but also worry about. She appears weaker and more fragile to me. Perhaps that is her tiny body. I long for the day that she crawls around our home and gets into everything she shouldn't. I look forward to the frustration of her running around when I want her to sit still. We just want our girl to receive a new heart and get stronger.
I often struggle with the term 'new heart' as the heart is not new. I feel it would be more fitting to call it; 'previously loved' or 'gently used'. The only new heart you have is the one you are born with or the one you receive after accepting Jesus as your Saviour. I also feel like saying, 'new heart' takes away from the donor family who 'used' that heart before Hope. One day it will come to me and I'll find the term I'm looking for to express how I see a heart that is gifted to our girl. We continue to pray that a family is able to make that most difficult choice and sacrifice to save our little girl's life.