I realized that I hadn't updated in a couple of days, so I thought I would. We still don't know anything, Zeben will be three weeks old tomorrow. He is still breathing really fast most of the time (though I have noticed that in the evenings, when he's sleeping, he slows down to 60 or so, which is the high end of normal). He has been nursing much better the past couple of days. I am anxious to see what he weighs (to confirm that he's getting plenty). I think he just got overwhelmed by my supply for a little while, but I got it under control, and he's now able to stay on my breast longer at each feeding, and even do some comfort nursing.
I feel totally torn between thinking that he's absolutely FINE (which I do sort of feel, in my gut), and thinking that we should go to Children's Hospital in Boston (2 hours away) where I believe we will get better care. The lung doctor we've been working with at the local children's hospital is very hard to get information out of. I still have no idea why we did the tests that we did last week, or what the fact that one of them was normal means (we still haven't gotten results from the reflux test yet). It's really frustrating. I keep asking "what's the best case scenario, what's the worst case scenario?" and no one will answer either of those questions. I just want to have some ideas of what they're trying to rule out/in!
This last stay at the hospital was far superior to the first one (which totally traumatized me), but I still felt like no one knew what they were doing. Specialists were coming in to do tests, and they'd ask how the baby was, and I'd say, "oh, he's great aside from breathing so fast," and they'd say, "he's breathing fast?" And I'd be like, "That's WHY WE'RE HERE!!!" There definitely seemed to be a major lack of communication going on. One of the specialists then responded, "well, the test I'm doing will tell us whether he's doing _____ [I can't remember what], but I'm sure that even if he IS, that wouldn't be causing him to breathe fast." So, basically, they were testing my baby for things completely unrelated to the breathing issue without giving me any explanation as to why
I just want them to tell us that we can stop worrying. It's so exhausting, worrying so much. I just want my baby to be okay.
Thanks for listening.