I have learned that there are often things missed in such a large medical community. I meet with doctors that inform me of our next steps, but fail to take the next step themselves in order to make it happen. I completely understand that they are VERY busy and we are one of their many patients. As a parent, you don't care about any of that, and only feel the frustration of your own situation.
Today they had planned to stop feeding Hope continuously and to start giving her regular feeds through her tube during the day. Unfortunately, the doctor failed to write these orders and the nurses are not allowed to do anything without an order from the doctor. The cardiologist didn't come by until 6 pm, so the order has now been written and will be started tomorrow morning. That sets us back a day and I can only pray it doesn't delay our departure. Thankfully, our nurses have been fantastic and informative in so much of Hope's care. They've begun teaching me things that I'll need to know before we can head home.
Hope slept for most of the day and was very tired. I'm hoping that doesn't mean she'll be ready to party all night. When the OT came to try bottle feeding with Hope again, we weren't able to get her to wake up enough to eat. She's going to come back tomorrow and try again. I got to have lunch with Sadie at the hospital today. It's always nice to see her during the day. She is doing so much better and seems to have adjusted to life back in Calgary. She's her fun loving self again. We have a blast with her and cherish the moments. I went home for dinner tonight, and after dinner we went for a walk with Sadie and marvelled at her sense of adventure and creativity too.
It's great to have our friend from the Ronald McDonald House here. Her daughter has HLHS as well and we're able to compare our care. That way we can be sure we're not missing any important tests or medications that are overlooked by accident. We have different cardiologists, with different action plans for our girls. If we work together, we'll get the best of both doctors!
Living in a hospital room is not the most ideal situation, but it does have its perks. It causes Shawn and I to be intentional about finding time to spend with one another. When we spend time here, our main goal is to snuggle Hope and to be together. We've gained a lot of incredible time with each other that is free of distractions. If we were together in our own home, I'd be folding laundry, cleaning the kitchen or checking my email. I find that I spend more quality time with Sadie too. She's so curious about the world and is asking a lot of questions. I look forward to having my family in one place again, but I hope we continue to be intentional about quality time with one another. I hope that I can hold onto the most important thing I've learned, family is more important than anything else I need to do. Right now I don't have the option of doing something else, I pray that when I do, I continue to value my family above all else.