It has been a really memorable Christmas. We have had a lot of fun opening presents, eating Christmas candy, and spending time with family. Currently our hospital room looks like some kind of Christmas bomb went off leaving the debris of paper, gift bags, and toys all over... there is barely room to walk. This room always feels small, but you stuff our extended family and two wagons full of presents in here and it's enough to make my blood pressure rise. Fortunately, this is a good kind of stress and my boys are loving every minute of it. They are so cute, playing together with all their new stuff, especially now that Caleb is at the age where he wants to do whatever Jonah is doing. With that in mind, we got Caleb a lightsaber since Jonah has one. In hindsight, that might not have been my greatest parenting choice. At least we are already in a hospital, right?
Caleb's doing pretty well. I was hoping all the holiday goodies would entice him to eat more, but all last week he just continued to eat less and less until he was pretty much only taking a bite or two at meals. So on Saturday the doctors decided to increase his milrinone, which is something I was really hoping would not happen. (Recap: Milrinone is the powerful drug that is in a PICC line that runs all the way into Caleb's heart. It is helping his heart to contract and is considered a "life support" measure at this high of a dose. He is almost to the maximum dosage.) The doctors assured me, however, that they are simply trying to get him to eat and are not concerned that his heart function is getting worse. And that if they need to, they could probably go up just a little more, so we still have at least a tiny buffer if he needs it. Yesterday the medicine must have started to work because he did eat a little more with each meal. He had an echo today to see how his heart is doing and I am anxious for the doctors to read the results. Praying that it hasn't gotten worse.
I was really hoping that we would get a heart by Christmas. Now that Christmas has come and gone, I'm starting to come to terms with the fact that we might be here a really long time. I know it could be any minute, but in my mind I am starting to think maybe it will be a while. And I'm ok with that. I want to go home of course, and I desperately want my family to all be together under one roof, but I know that some day when this is all over, I will look back and realize this wasn't that long of a time. I went sort of crazy a few weeks ago wanting to be done with all this, and in the last few days I've started to have a new level of patience with this season of my life. I know we can do this... we've already been here for two whole months and I feel stronger than I did when this started. It's not the timeline I would have chosen, but I'm getting less and less bent out of shape when things don't go the way I would have chosen. Caleb obviously feels secure and comfortable here, and we're managing to have some kind of normal family life. Might as well stop thinking about these days as "Days I Wish I Was Doing Something Else" and just enjoy them for what they are. Because there are much worse ways to pass some time and I have so much to enjoy. Like a lightsaber-weilding toddler and a four-year-old who is relishing the fact that he is allowed to eat WAY more candy than usual right now. Much love to you all and praying that you too are finding the joy and blessings that are right in front of you.