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May. 28th, 2007 02:13 amI feel better. The bigger kids were all mostly well yesterday, and seem downright healthy today, and Elise is still fine. She's also been home for a few days now and is doing so well, and I have a great pediatrician I trust, and she's on an adjusted dose of phenobarbital. I'm not sure I would call myself "relaxed", exactly, especially as I'm having entirely too much back/shoulder/abdominal/hip pain...but I'm calmER.
I started to get my groove back yesterday; I cleaned the kitchen twice, made a good dinner, read to the kids, played with Jake in a roughhousing way and Isaac in a sitting with a toy way. I made Annie brush her hair and read me something. I stayed with most everyone while Grant took Aaron out to the park. Cleaned the dining table and swept up the floor.
All of this is probably why I'm in pain today :p But I feel like some kind of lazy good-for-nothing when I'm "only" changing, nursing, wearing, medicating and stimulating the baby, as Grant tries to keep up with everything else. And it feels really good to be reading to and playing with and cooking for. And Elise sleeps really well. You don't want to brag about how well your baby sleeps when you're dosing her with a sedative; but she is awake almost all day, and asleep almost all night, and THAT is not the sedative.
I wonder often how different she might be if not for the meds. I've had people in comment threads tell me how much it changed their personality, and obviously it is sedating. I wonder if, when she weans off of it (most likely sometime between 2 and 6 months old) she will suddenly become a different baby. As it is, she smiles responsively often, coos at me, is always content if held or laying with me, and is increasingly strong during her floor time. She doesn't like to be poopy, and is very interested in small children and stuffed penguins. Her tremors are at their worst during diaper changes, and never happen at the breast.
And of course I wonder even more often than that...how will she BE, be, regardless of meds. How will her brain injury manifest itself as the years (or months) roll by. "One day at a time", yes, but it's hard to not spend each of these days thinking about it. A diagnosis on her discharge summary is "hypoxic ischemic encephalopathy", which upon googling I find is a lot of things I already knew, and some that I didn't.
What I knew: It means that her oxygen supply was depleted for a long time. Her brain redirected blood flow to vital organs only in an attempt to survive. When it got really bad, all blood was going to her heart and brain. This is why so many other organs were shut down for the first day or two of her life. But for an unknown period it was not even enough for the brain alone, and so her brain cells started dying, and as toxicity built up it caused calcium deposits that made swelling and further cell death.
What I did not know: 50% of babies with this die in the first 24-48 hours, and 75% total end up dying within the first month, due to organ failure. HOLYSHIT yes I'm glad I didn't know that. Of the 25% of babies that survive at all, 80% of them only do so with SEVERE disabilities, as in little to no independant function or mobility/communication. 10-20% have moderate disabilities like cerebral palsy but can still lead a semi normal life much of the time. "Up to 10%" are just normal.
Those odds suck.
I cannot totally ditch my hopes that she be in the tiny percentage of normal children. I will accept and love her no matter what, and anticipate her needing help in some areas, possibly for quite awhile, and maybe never catching all the way up. But I would be surprised and dissapointed if she were in the big 80% group, because, well...ALL of her sensory pathways are intact (she reacts semi-badly to the taste of her medicine, consistently, and HORRIBLY to the formula she was on that one day, but loves breastmilk...her pupils grow and shrink in response to light and she follows objects with her eyes, as well as looking towards sounds - and she passed her hearing test...wet diapers make her fuss, cold or warmth wake her up, she's soothed by holding), and she's got pretty normal muscle tone. She holds her head up and turns it in different directions, when on her belly, and even smiles responsively on a regular basis. She has a startle and a tonic neck and a moro reflex, and a grasp, though that is weak (but strengthening noticeably with me working with her). I feel like if she were truly destined for SEVERE disabilities, she would be doing what the nurses told me - still in the hospital for a couple of months, and likely eating through a g-tube, while a feeding team did swallow studies and tried to "teach her to eat". As it is she's soaking a diaper almost every hour and pooping up a storm, and nursing enough to be gaining rapidly.
Whatever happens from here on in, she has already beaten the odds in incredible ways.
A close friend told me she did some research and that about 1 in 10 babies cords' fail to develop the warton's jelly that cause them to hold their shape under pressure, protecting the vessels within. It's kind of like the blood in an erect penis, apparently, and keeps it from being able to become compressed. In the 10% of babies that lack that structural integrity in the cord, it sometimes never becomes an issue. But sometimes it gets flattened under the baby somehow, and this happens.
I tell you one thing...I quickly became COMPLETELY fine with not ever having another biological baby, earlier today. The thought of actually being pregnant again and living it, day to day, made me realize I would be a total nervous wreck. NO THANK YOU.
It would really make me insane, not knowing what was going on in there, after this.
I'm going to try to post a BUNCH of pictures either later tonight or tomorrow. And also, her complete birth story. I keep getting called away; this has sat open with me adding to it in bits all day and night. This 5 kids under 7 business doesn't leave a lot of leisure time. But we had a great picnic dinner out at a park, and everyone had their own good bedtime routine.
I started to get my groove back yesterday; I cleaned the kitchen twice, made a good dinner, read to the kids, played with Jake in a roughhousing way and Isaac in a sitting with a toy way. I made Annie brush her hair and read me something. I stayed with most everyone while Grant took Aaron out to the park. Cleaned the dining table and swept up the floor.
All of this is probably why I'm in pain today :p But I feel like some kind of lazy good-for-nothing when I'm "only" changing, nursing, wearing, medicating and stimulating the baby, as Grant tries to keep up with everything else. And it feels really good to be reading to and playing with and cooking for. And Elise sleeps really well. You don't want to brag about how well your baby sleeps when you're dosing her with a sedative; but she is awake almost all day, and asleep almost all night, and THAT is not the sedative.
I wonder often how different she might be if not for the meds. I've had people in comment threads tell me how much it changed their personality, and obviously it is sedating. I wonder if, when she weans off of it (most likely sometime between 2 and 6 months old) she will suddenly become a different baby. As it is, she smiles responsively often, coos at me, is always content if held or laying with me, and is increasingly strong during her floor time. She doesn't like to be poopy, and is very interested in small children and stuffed penguins. Her tremors are at their worst during diaper changes, and never happen at the breast.
And of course I wonder even more often than that...how will she BE, be, regardless of meds. How will her brain injury manifest itself as the years (or months) roll by. "One day at a time", yes, but it's hard to not spend each of these days thinking about it. A diagnosis on her discharge summary is "hypoxic ischemic encephalopathy", which upon googling I find is a lot of things I already knew, and some that I didn't.
What I knew: It means that her oxygen supply was depleted for a long time. Her brain redirected blood flow to vital organs only in an attempt to survive. When it got really bad, all blood was going to her heart and brain. This is why so many other organs were shut down for the first day or two of her life. But for an unknown period it was not even enough for the brain alone, and so her brain cells started dying, and as toxicity built up it caused calcium deposits that made swelling and further cell death.
What I did not know: 50% of babies with this die in the first 24-48 hours, and 75% total end up dying within the first month, due to organ failure. HOLYSHIT yes I'm glad I didn't know that. Of the 25% of babies that survive at all, 80% of them only do so with SEVERE disabilities, as in little to no independant function or mobility/communication. 10-20% have moderate disabilities like cerebral palsy but can still lead a semi normal life much of the time. "Up to 10%" are just normal.
Those odds suck.
I cannot totally ditch my hopes that she be in the tiny percentage of normal children. I will accept and love her no matter what, and anticipate her needing help in some areas, possibly for quite awhile, and maybe never catching all the way up. But I would be surprised and dissapointed if she were in the big 80% group, because, well...ALL of her sensory pathways are intact (she reacts semi-badly to the taste of her medicine, consistently, and HORRIBLY to the formula she was on that one day, but loves breastmilk...her pupils grow and shrink in response to light and she follows objects with her eyes, as well as looking towards sounds - and she passed her hearing test...wet diapers make her fuss, cold or warmth wake her up, she's soothed by holding), and she's got pretty normal muscle tone. She holds her head up and turns it in different directions, when on her belly, and even smiles responsively on a regular basis. She has a startle and a tonic neck and a moro reflex, and a grasp, though that is weak (but strengthening noticeably with me working with her). I feel like if she were truly destined for SEVERE disabilities, she would be doing what the nurses told me - still in the hospital for a couple of months, and likely eating through a g-tube, while a feeding team did swallow studies and tried to "teach her to eat". As it is she's soaking a diaper almost every hour and pooping up a storm, and nursing enough to be gaining rapidly.
Whatever happens from here on in, she has already beaten the odds in incredible ways.
A close friend told me she did some research and that about 1 in 10 babies cords' fail to develop the warton's jelly that cause them to hold their shape under pressure, protecting the vessels within. It's kind of like the blood in an erect penis, apparently, and keeps it from being able to become compressed. In the 10% of babies that lack that structural integrity in the cord, it sometimes never becomes an issue. But sometimes it gets flattened under the baby somehow, and this happens.
I tell you one thing...I quickly became COMPLETELY fine with not ever having another biological baby, earlier today. The thought of actually being pregnant again and living it, day to day, made me realize I would be a total nervous wreck. NO THANK YOU.
It would really make me insane, not knowing what was going on in there, after this.
I'm going to try to post a BUNCH of pictures either later tonight or tomorrow. And also, her complete birth story. I keep getting called away; this has sat open with me adding to it in bits all day and night. This 5 kids under 7 business doesn't leave a lot of leisure time. But we had a great picnic dinner out at a park, and everyone had their own good bedtime routine.
