Looking down the line

Cora tried for another sleep fest today, but this time I wasn't going to stand for it. I insisted she try her rocking bouncy seat and she didn't protest. The entire time she had a look like, "really mom? Are you satisfied?" But she complied, and it made me very happy.

In medical news, her blood culture of yesterday is still growing the infection despite a couple of days on antibiotics. The good news is that they now have a better understanding of the specific bacteria that's growing, so they were able to switch her to a better antibiotic. We should see some change in the next day or so.

Cora didn't have much interest in drinking from a bottle today. The occupational therapist worked with her for a good half hour but Cora just seemed mad about it today. I am starting to accept that she will have a feeding tube for a long while. The last time she had the opportunity to drink by mouth was over three months ago. I suppose it will just take time to really relearn everything.

The GI (gastrointestinal) team came for an evaluation. There had been some concerns that she was possibly having trouble metabolizing food, which could be contributing to her difficulty gaining weight. Luckily the team does not believe this to be the case. They continue to think her persistent work of breathing and some of the other heart failure symptoms are causing her to burn excess calories. The better she gets, the more we hope she'll be able to put on weight. In the meantime she'll still need the intravenous lipids to augment her food and chubby her up. I can live with that, I guess.

We also had a consult with the pulmonary (lung) team, to investigate Cora's continued need for oxygen support and her difficulty keeping fluid off her lungs. There are additional tests they'd like to run but these would require intubation and general anesthesia and she's too fragile for that right now.

There was more tweaking of her doses of heart medications, trying to find that right balance to give Cora as much support as possible.

Now that I list it all out, I suppose it was kind of an eventful day. But at the same time, as usual, we didn't learn very much.

A friend of mine was visiting today and she witnessed a conversation I was having with some of the cardiologists, one of whom said, "maybe in a couple days," in answer to one of my questions. When they left my friend turned to me and said, "what do they mean, 'maybe in a couple days'? Is it, or isn't it? What does that mean? Two days? Three days? Ugh!" It made me laugh because I had been perfectly content with the doctor's answer. We have built quite an immunity to the oddities of this system, because you really have to shift your perspective if you're going to survive in the medical world for long. You have to totally abandon the need for absolutes or blacks and whites. Everything is, "we'll just keep watching it," or, "that could happen." This has been a painful transition for a type A, control freak, like myself, who just wants to know how every story ends and on what timeline.

But I have to say, I'm glad about the change in me. I'm more okay with vagaries now. I'm okay with waiting and seeing. Jason and I have been in the very humbling position of having been told many times that our daughter might not survive. That's a conversation that fundamentally, and I believe, forever, changes the axis on which your world rotates. From then on, you live carefully on the delicate pinhead in the exact center of the pendulum. If we are even talking about things that may happen down the line, I'm okay with that. I am just happy that there is a line we can look down, that Cora is here with us, and that she has beaten so many odds already in her short life. We have far more possible outcomes from my seat tonight than we did just a few weeks ago.

As a dear and very wise friend always says, the solution is beyond my imagination. So one way to look at it is, the more days this continues, the more broad the solutions become.