how to deal with nanny at home 21Elizabeth H Bonesteel Really? And yet you were unable to cite a single piece of evidence from those transcripts in support of your contention that "Ms. Woodward was convicted because she was guilty...
There's no reason *not* to suppose it either. If frequent feeding and ample milk intake shifted her sleep-wake pattern significantly so that she started waking up when hungry, I'd say "normal sleepy newborn". But she's 6 weeks old and gaining well and still has issues waking up when she's hungry and *needs* to eat. She's not a newborn anymore--I shouldn't have to strip her naked to get her to wake up enough to eat when she's clearly hungry.
how to deal with nanny at home 19I think your basic point - that it's worth bringing up any issues as quickly as possible - is an excellent one. It's good practice...
Weight gain is actually getting to be less of an issue. But yes, I consider it highly likely that it was connected to the deletion because the primary "issue" with her gain has been the excessive sleepiness. Like completely abnormal sleep-wake responses to hunger. This is really "the" critical issue. One of the most common side effects of many, many deletions-etc. are growth issues, for a huge variety of reasons, so even if there's no "clear" gene connected to it, it's not suprising. In our case, we're lucky because she *can* gain weight if I can cram enough food into her--and we've finally hit on positions-methods-ways of making her wake that mean she gets enough food into her on a daily basis to gain.
I don't know how long she is now or where her head growth is at--she was born at 9 pounds 4 oz. Dropped to 8 pounds 3 oz by 5 days old. At not quite 2 weeks was "up" to about 8 pounds 4.5 oz...that's when we started supplementing pumped milk. She put on 4 oz in 2 days. Then 4 oz in the following week. Then 3 oz in a week.. she was 8 pounds 15 oz at 4 weeks old, IIRC, at which point I started supplementing after just about every feed, at which point she started putting on at least an ounce a day, and gradually liking the supplement less and less, to the point where this weekend I pumped 6 oz in one day, she took NONE of it by bottle, and still gained 2 1-2 ounces in 2 days. She's up to 9 pounds 15 oz as of today, and I'm starting to relax about it. Clearly I have enough milk, and she's taking enough in at the moment.
Her latch is still sometimes iffy. BUt we compensate with positioning such that she gets maximum flow with least effort. Her mouth is a little funny--if she sucks a finger her mouth feels "short" and I can feel more action in the back than I'm used to--it's really odd and hard to explain. I've had a lot of newborns suck my finger and I've never felt this before. Her palate feels intact and looks intact to cursory examination. She's VERY noisy when she eats. When she does not burp, she gags, chokes, and sometimes vomits, in that order. Sometimes she spits up out her nose--in fact, 9 times out of 10 if she spits up without choking first, it comes out her nose. She does weird things with her tongue...it's not tied, she *can* extend it, she just often doesn't.
She still has a hard time waking up when she's warm and comfortable, and staying awake for a feed after a long sleep. And her latch is TERRIBLE in the morning--she makes kissy faces and sucks her tongue. I won't let her suck my nipple "first thing" anymore--I give her a finger and let her suck that until the latch feels "right" on my finger, even then she still gets "kissy face" and doesn't latch very deeply. I think I relatch her close to a dozen times before it gets close enough to "right" that she's swallowing and it doesn't pinch--and this is at 6 1-2 weeks old. Later in the day, and when she's more awake and not as hungry, it's not so bad and she often gets a good latch on the second try. It doesn't help that my nipples are little and squishy until she's tried a latch or two.
There are three possible connections between her feeding-choking and the genetic stuff.
1. The size of her fontanel and spacing between her eyes makes me think that there were some delays-issues in closure, related to the same things that cause cleft palate, but nowhere near as severe. Not a far reach to think there might be some odd formation in the midline when there are so many other odd formations in the midline... Since the fontanel-eye spacing-ear position things prompted our genetic testing in the first place, yes, I do think these are connected to the deletion.
2. Sleep-wake patterns: My grandmother has narcolepsy. Somewhere (would have to look it up) on the 4th chromosme is a gene which may be connected to narcolepsy. Trust me when I say this kid's sleep-wake patterns are *weird* and not normal newborn sleepiness or low blood sugar.
3. Metabolic issues relating to protein manufacture-mitochondria. This is very speculative and not something that I think is well understood by anyone, really--but the genes involved *are* related to mitochondria protiens, which goes to energy levels throughout the body. Shiny's muscle tone is normal. She does have waking periods and periods of activity. But she also seems to run a little "warm" and her ability to wake is very tied into temperature.
Jenrose
