Tuesday, November 21, 2006
Bathtime! Now with extra tubes!
The frequency with which i post on this blog is i think directly related to how motivated i am plus how tired i am plus how much i am able to deal with what's going on. The exact equation has yet to be found conclusively, but i think we can all see where i'm going with this.
Tuesday has stopped sleeping at night. For the last week or so she has been waking up between 9 and 12 at night and staying awake or just fussing without interruption for hours, roughly between 4 and 7 in the morning she'll fall soundly asleep. What that means is that if you combine the amount of sleep that i am getting per night with how much sleep Christine is getting per night, you end up with a bit more than the average person. So either one of us gets enough and the other almost none or we both get not nearly enough. Tuesday sleeps more or less soundly throughout the day with some small periods of wakefulness here and there but, essentially, she's got her days and nights reversed. Why? Heck if i know; no one can say.
Last night we tried a new medication with her, at the suggestion of her doctor. We gave her phenobarbitol, a sorta kinda sedative that she was actually getting right when our stay at the NICU was coming to an end and the attending neonatologist decided that Tuesday really didn't need it because it is primarily used as an anti-seizure medication. Well, it can also calm you down, so we gave her 3.75 ml (a truly alarming dosage considering she gets 0.2 ml of ativan and 0.15-0.25 ml of morphine) at eight o'clock last night and BAM she slept like it was going out of style. Until exactly midnight, when she woke up. She then stayed awake until 7 in the morning. I'd have to check with Christine on that because, bless her heart, she let me go to bed while she watched the baby starting around four in the morning. So we're going to try it again tonight, she got 3.75 ml of phenobarbitol (seriously, i had to ask the nurse several times before i was comfortable with it and Christine asked me several times before she pretended she was comfortable with it) a little before seven. Unfortunately, she slept like a freaking pro all day today from what i'm told. She's wide awake and thrashing, smiling, squirming, staring and making tons of noises at the moment, so i'm going to hold out some false hope for tonight.
If all else fails and the kid just clings to her nocturnal lifestyle with an unbreakable kung-fu grip, we found out that the hospice service professionals will arrange for someone to come and spend the night with Tuesday so that we can get some sleep. This idea would be so much more appealing if we were not fanatically anti-social and somewhat embarrassed about our home right now. We were also told that someone would probably be willing to donate a cleaning service to us but, ugh, the thought of yet another person being around in our very small domicile is more unpleasant right now than the thought of getting a bit more housework done. I'm pretty sure we'd run out of air. Personal spaces would be infringed upon willy nilly. Chaos, i tell you, terror and chaos. So of course we're thinking it over.
Also pictures are very much lacking at the moment i have taken to recording videos of her during her more active periods. Right now i'm looking into ways that those videos could get hosted for people to see them, but in the meantime, i'm afraid we'll all have to make due with one measly picture. Perhaps more will be coming, wouldn't that be nice?
Yesterday we changed the tape on her cannula and during the process she cried like it was going to make her rich. We moved the tubes completely away from her face to clean off a bit where there is always tape on her face, so there was perhaps a minute where she wasn't getting the supplemental oxygen. By the time we got the cannula back in she had turned purple. I wish that i were exaggerating. She pinked up, or purpled down i guess since she doesn't really get pink like most babies do most of the time, very quickly afterwards, but it was still a rather alarming sight.
I'm sure i'll think of other things i should have mentioned as soon as i publish this. I hope you have a wonderful and warm Thanksgiving.
The frequency with which i post on this blog is i think directly related to how motivated i am plus how tired i am plus how much i am able to deal with what's going on. The exact equation has yet to be found conclusively, but i think we can all see where i'm going with this.
Tuesday has stopped sleeping at night. For the last week or so she has been waking up between 9 and 12 at night and staying awake or just fussing without interruption for hours, roughly between 4 and 7 in the morning she'll fall soundly asleep. What that means is that if you combine the amount of sleep that i am getting per night with how much sleep Christine is getting per night, you end up with a bit more than the average person. So either one of us gets enough and the other almost none or we both get not nearly enough. Tuesday sleeps more or less soundly throughout the day with some small periods of wakefulness here and there but, essentially, she's got her days and nights reversed. Why? Heck if i know; no one can say.
Last night we tried a new medication with her, at the suggestion of her doctor. We gave her phenobarbitol, a sorta kinda sedative that she was actually getting right when our stay at the NICU was coming to an end and the attending neonatologist decided that Tuesday really didn't need it because it is primarily used as an anti-seizure medication. Well, it can also calm you down, so we gave her 3.75 ml (a truly alarming dosage considering she gets 0.2 ml of ativan and 0.15-0.25 ml of morphine) at eight o'clock last night and BAM she slept like it was going out of style. Until exactly midnight, when she woke up. She then stayed awake until 7 in the morning. I'd have to check with Christine on that because, bless her heart, she let me go to bed while she watched the baby starting around four in the morning. So we're going to try it again tonight, she got 3.75 ml of phenobarbitol (seriously, i had to ask the nurse several times before i was comfortable with it and Christine asked me several times before she pretended she was comfortable with it) a little before seven. Unfortunately, she slept like a freaking pro all day today from what i'm told. She's wide awake and thrashing, smiling, squirming, staring and making tons of noises at the moment, so i'm going to hold out some false hope for tonight.
If all else fails and the kid just clings to her nocturnal lifestyle with an unbreakable kung-fu grip, we found out that the hospice service professionals will arrange for someone to come and spend the night with Tuesday so that we can get some sleep. This idea would be so much more appealing if we were not fanatically anti-social and somewhat embarrassed about our home right now. We were also told that someone would probably be willing to donate a cleaning service to us but, ugh, the thought of yet another person being around in our very small domicile is more unpleasant right now than the thought of getting a bit more housework done. I'm pretty sure we'd run out of air. Personal spaces would be infringed upon willy nilly. Chaos, i tell you, terror and chaos. So of course we're thinking it over.
Also pictures are very much lacking at the moment i have taken to recording videos of her during her more active periods. Right now i'm looking into ways that those videos could get hosted for people to see them, but in the meantime, i'm afraid we'll all have to make due with one measly picture. Perhaps more will be coming, wouldn't that be nice?
Yesterday we changed the tape on her cannula and during the process she cried like it was going to make her rich. We moved the tubes completely away from her face to clean off a bit where there is always tape on her face, so there was perhaps a minute where she wasn't getting the supplemental oxygen. By the time we got the cannula back in she had turned purple. I wish that i were exaggerating. She pinked up, or purpled down i guess since she doesn't really get pink like most babies do most of the time, very quickly afterwards, but it was still a rather alarming sight.
I'm sure i'll think of other things i should have mentioned as soon as i publish this. I hope you have a wonderful and warm Thanksgiving.
posted by jonathan @ 7:10 PM
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