I feel like a cheap t-shirt. You know the one you saw on sale at a store you never shop in, but this time you decided to give it a shot. After wearing it for 2 hours you find the first hole, and after one wash the t-shirt is only useful as a rag. I am a cheap t-shirt right now, I'm extremely thin and too much more of this is going to cause me to tear. Once again I had to say goodbye to Sadie for the week. Snuggling with my daughter while she repeats, "I don't want to go, I just want to stay with you", is an absolute torture. Shawn and I have decided that going into our 4th week living apart, that this will be our last. If Hope and I are not home by Friday, he and Sadie will be moving up to Edmonton until we can return as a family. It's just too hard to only be together as a family for 2 short days a week.
Hope's left lung continues to drain large amounts of fluid. She is over 1500 mls already. The medications we tried have not been enough. Hope stopped receiving her feeds an hour ago. After working so hard to get her eating again, we are going to have to start over. Hope will receive only TPN (liquid nutrients) for at least 7-14 days, depending on how long it takes to get her left lung to dry up. Please pray that it happens quickly and we can get her eating again. After having that food in her stomach, she is going to feel hungry and will surely wonder why we are starving her once again.
Hope did very well last night and had a decent day today. She was awake often and yet was able to have some good naps as well. Her platelet levels are really low, so they are looking into this and wonder if she has a new clot somewhere. This would be so discouraging, as we have more than enough clots already. If she doesn't get her levels up soon, they'll have to give her some platelets to get her back up to a safe level. She also continues to have 50% of the chest tube drainage replaced with albumin. Albumin is taken from human blood and we are using a lot of it every day. Please consider donating blood if you are not already doing so. Blood donors are keeping kids like Hope alive.
I had the blessing of holding Hope for a little bit longer today. She still got uncomfortable quite quickly and wanted to be put down. The time I did have her in my arms, was absolutely wonderful and I cherish those moments. I always struggle when Sadie is only here for two days. I don't want Hope to feel like I'm not around and to be looking for me all weekend. Yet, I want to spend my time with Sadie as well. I'm not very good at playing with toys and running around. I'm the type of mom that wants to read books, watch movies or take you out on an adventure. I have a really difficult time keeping Sadie entertained at the hospital. So if I want to have some intentional time with Sadie, I have to leave Hope. It's a position that no parent should be in for such a long period of time. It's been 6 months already (not counting the first 2 months of her life in hospital). Hope will have her 10 month birthday in the same room she celebrated her 6 month birthday.
I am praying that next week is full of good news, encouragement and hope of a return to Calgary. This past week has been absolutely exhausting and finishing it off with another goodbye to Sadie and Shawn was a kick in the teeth. We need things to turn around, we're starting to wear thin and I'm not sure how much more we can take.