Simon is really sick.
I keep wanting to not stay with that information, in general. That's made even easier by the fact that for all intents and purposes he looks and acts like a normal baby. We had a team meeting with our cardiologist, social worker, and the two clinical nurse specialists to discuss his weight gain or lack thereof and to touch base about short term and long term goals.
The short term goal is that he needs to gain at least 15-30 grams a day and this week we've averaged 10. So to accomplish more weight gain, we need to seriously bump up his calories and the only way to do that without stressing him too much is formula fortifier. Laura's really concerned that this will mean the end of breast feeding because the fortifier keeps him feeling really full but they're keeping him on the every three hour schedule so he might not ever really get hungry. We're having to let go of what we want ideally in favor of what's medically necessary for him to have a better chance to heal.
We're definitely not going home next week. Dr Rosenfeld explained whywe might have gotten that message from other doctors. For other cardiac patients the criteria for going home is usually are they gaining weight and not much else. Simon's not dealing with a structural defect or post op recovery, he's dealing with weak, sick muscle and that's different and more complicated than a surgical recovery where the muscle is basically healthy but injured in some way. Ultimately Dr. Rosenfeld is the final say in whether Simon stays or goes, which is good to know, b/c there are so many people in the mix right now. It was a good meeting with a lot of information, some pieces harder to hear than others.
It was really challenging to go immediately from this team meeting about Simon not really being much better, directly into a work conference call that I was already late to. I feel like I should almost just go back to work full time because who knows how long this will go on and at the same time how can I possibly leave Laura and Simon in the hospital for that many hours and not be with them. This whole thing just feels insane. Methinks I should play the lottery.
There's been discussion about Simon getting a more permanent IV line which would involve a surgical procedure (since they can't seem to get a PICC line in despite at least four attempts). It's both terrifying and a little bit of a relief to think of that type of IV. He'd have it for up to 6 months and they'd be able to draw labs and give him medication should he need it. We'll find out in the next day or two. Kind of a rough day.
A sweet note today- Our friends Angie and Elizabeth who have two small boys (four months apart!) brought us homemade food. (You can read their article in the latest Curve magazine as to why it's such a big deal that they made us homemade lasagna complete with noodles that they made themselves).
Laura says: I don't really know what to write. I'm a little tapped out right now. The visits and gifts are amazing.
My heart doesn't know what to do with the sweetness of time with Simon where he presents somewhat normally, nuzzles into my neck, takes better and better to nursing, AND still is a very sick boy on the inside who's heart is not working any where near well enough.
That's all I got right now.
p.s. just had an experience that made me laugh so hard I cried. I was dictating this blog post to Laura while I held Simon and when I went to re-read it, I realized she had types "all intents and purposes" as "all intensive purposes". We had a back and forth for a few minutes before she conceeded that, in fact, the phrase might really be "all intents and purposes". It was one of those classic things like learning as an adult that unicorns, in fact, do not exist (there is a great "This American Life" on NPR about this type of thing that is hi-larious).