Updates on Laurel: January 2001

It's been SO hectic! She's actually been home for two weeks, but she still has to be tube-fed and it's VERY time-consuming and I'm still trying to catch up with letting people know what's going on with her (I feel like I'm doing pretty well if I get time to take a shower every other day). I've been trying to stop breast-pumping because it would really ease the time crunch and because I get so little milk anyway (she's been eating mostly formula for some time, and I've talked to four different lactation consultants and tried their suggestions to no avail), but I keep getting mastitis and can't stop!

Anyway, Laurel's doing very well, all things considered. Although she's still being tube-fed, we have a therapist coming to our house to work with her, and she (the therapist) is pretty hopeful about her prospects for learning to eat (right now we are practicing sucking at every feeding - she was really into it for a while, but seems to be getting bored, so I think we need to move on). She's a good baby, pretty much only cries if there's something obviously wrong, although I WISH her favorite time to be up wasn't from midnight to 3 AM. She is, I think, behind on things like smiling (only just doing it now), but she's working on it and is really into batting at and trying to grab for things right now. And there are still things we're pretty worried about, like how much she turns to the right and how tense her legs are (the pediatrician has told us she may well have difficulty walking). But considering that it was just over a month ago we (and the doctors) were afraid she was going to be a vegetable, she's a little miracle.

I'm finally finding some time because I gave up pumping...I feel pretty guilty about it, but I never did manage to supply more than half what she needs (despite four lactation consultants and three rounds of mastitis), and I was driving myself to exhaustion. With the setup and cleanup and the fact that my letdown was pretty slow, I was spending about 6 hours a day pumping.

We remain kind of baffled by how to answer the question "How's Laurel doing?" We're frustrated on the attempting to get her to eat by mouth front - partly because she has good days and bad days as far as her interest in sucking goes (just fingers dipped in a little formula, we're not allowed to try and actually feed her for fear she won't swallow safely - I frankly figure she's sick of sucking for no reward because she did really well with it at first), partly because we can't progress to the next step (finger-feeding, with a little tube taped to a finger attached to a container with formula) until we have the therapist and an awake, cooperative baby in the same place at the same time, so the therapist can evaluate how she does with it. Which we've been trying to do for several weeks now... And otherwise, it's just hard to say how she's doing. She is unquestionably making progress, but it's still too soon to say how she'll be - doctors and therapists are still saying she could be anything from functionally normal to severely impaired cognitively and/or physically. At this point, we know that she has some cortical vision impairment (although she is definitely not blind, her eyes waver when she looks at things, and until recently she didn't look at us much), some trembling and too much muscle tone (which might mean that, for instance, her legs could be too stiff for her to walk). Any or all of these things could get better, however, as her brain continues to rewire itself. Or they might not. On a day-to-day basis, she's a pretty happy camper, except that since going to all formula (ProSobee - she had too much trouble with the milk-based formula) she's had trouble with colic and constipation (guilt, guilt...). She bats at things, and just last night Bob got her to actually reach for and grab a rattle (another sign that her eyesight is improving, at first she just seemed to find the things she was batting at by touch without looking at them).