Initially Lyra was to be on 10 days of "gut rest". In what has become a standard experience for us during this hospital stay, the 10 days became 14. I try not to get too annoyed by this because they are doing this to be conservative, and therefore it's in Lyra's best interest, but 14 days of no oral feeding was pretty hard. She doesn't really sleep all that well. She'll get a couple of good 2 or 3 hour naps in during the morning or afternoon, but then she just catnaps, sleeping for 30 minutes to an hour. While her interactivity has been getting better (we do get a lot of smiles, and even the nurses and other visitors get smiles), she's still pretty grumpy most of the time. She's on diuretics so she has a wet diaper about every other hour (which wakes her up). She's had 2 fevers, neither of which broke 103F, but both required a bunch of labwork to rule out infections (which means getting poked, usually at least twice, often 3-4 times because she's hard to get blood from, all of which means having her sleep disturbed even more).
Throughout all of this, we were looking forward to having the gut rest end. Lyra was allowed to start receiving fluids by mouth today, just the Pedialyte kinds of liquids at first and if she tolerated that we could move on to breast milk. The challenge in all of this is that she's only allowed 5cc of fluid per hour, up to 120cc for the day, meaning that we're essentially having to feed her every hour, which is fine with us because we avoid Lyra getting a tube put down her throat again. Lyra seems to be tolerating the pedialyte okay, although she's been having these retching fits, but it's always mucous like stuff she brings up, more often than not, she appears to just have some kind of dry heaving thing. We're not completely sure why she does this, but she's been doing it for weeks now and no doctor or nurse who has witnessed it happening seems overly concerned by it. Of course this doesn't stop Maren and I from being worried, not even a little.
Maren did try some breast milk, but while Lyra loved getting it, she didn't keep it all down, so we decided to stick with the pedialyte for now. Maybe we'll try some diluted breast milk tomorrow.
It seems that once you have a child in the hospital over 30 days, you qualify for a parking pass. Yay us.
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Posted by Tim at August 30, 2004 10:34 PM