Sunday, September 24, 2006
Tuesday got to visit the Children's Garden at the hospital today. The weather was beautiful. So was the baby.
Christine and i spent another night with her last night, we all managed to get a fair amount of sleeping done thanks to the combination of medications the hospital is using to keep Tuesday comfortable. Then we spent the day with her. She's been asleep almost the entire time and only fusses when we're seriously messing with her, as in changing her diaper or putting her in an adorable outfit featuring large-headed ducks.
We managed to ask a few questions of the neonatologist today that hadn't yet occured to us and i'll share the answers with all of you since they're things that may be on some of your minds.
The pulminary hypertension is not, in and of itself, causing her pain. It is not, as i had assumed it to be, similar to a heart attack. It's not comfortable, but it's not hurting her. Eventually it may start to cause her some degree of pain due to difficulty breathing, but for now that's not her main discomfort issue. She is, though, not comfortable when she's not being medicated, that we know for a fact based on long periods of crying and fussing no matter how much we hold her and pat her and try to calm her down. What it all adds up to is she is in pain and/or she is unable to be calm and rested due to other conditions that she has, conditions that have not even been diagnosed, things that we have not even considered so far in her treatment because there were other, more immediate concerns. The long and short of it is that her chromosomal problems are enormous; even were she to not be suffering from pulminary hypertension she would have a very short life expectancy and it would be a life filled with hardship.
An exact, or even inexact, estimate of her remaining time isn't realistically possible. The neonatologist said she would probably guess anywhere between a couple of days to a few more days. Days. "So we're not looking at weeks, then?" i asked. She responded that they would monitor Tuesday's condition and how that changed and then perhaps they could tell us more. We were told, though, that she is looking paler and that her breathing is getting more rapid and more shallow. We asked if her puffiness was related to her heart and found out that it is. As it gets harder to get blood flowing around through her body less fluids are going to find their way out of her system. Perhaps you can see it in the pictures but her face is much more swollen than it used to be. What you can't really see is that her extremities are rather swollen too. Before we even asked the doctor told us there was nothing that could be done about that. Lasix wouldn't help her; if she was going to be peeing she'd already be peeing.
And, on a somewhat less eventful note, we've been given a private room in which to stay with her at the hospital. It's ours until we decide to leave. Just in case you were wondering, we're not sitting in the middle of a large nursery crying and bawling, we're by ourselves, it's fairly quiet and there's room enough for all of us to lie down on a pair of side by side cots and go to sleep together.
I'll see if we can't get a picture of her that shows off her beautiful hair a bit more. It's really just the most amazing color.
Christine and i spent another night with her last night, we all managed to get a fair amount of sleeping done thanks to the combination of medications the hospital is using to keep Tuesday comfortable. Then we spent the day with her. She's been asleep almost the entire time and only fusses when we're seriously messing with her, as in changing her diaper or putting her in an adorable outfit featuring large-headed ducks.
We managed to ask a few questions of the neonatologist today that hadn't yet occured to us and i'll share the answers with all of you since they're things that may be on some of your minds.
The pulminary hypertension is not, in and of itself, causing her pain. It is not, as i had assumed it to be, similar to a heart attack. It's not comfortable, but it's not hurting her. Eventually it may start to cause her some degree of pain due to difficulty breathing, but for now that's not her main discomfort issue. She is, though, not comfortable when she's not being medicated, that we know for a fact based on long periods of crying and fussing no matter how much we hold her and pat her and try to calm her down. What it all adds up to is she is in pain and/or she is unable to be calm and rested due to other conditions that she has, conditions that have not even been diagnosed, things that we have not even considered so far in her treatment because there were other, more immediate concerns. The long and short of it is that her chromosomal problems are enormous; even were she to not be suffering from pulminary hypertension she would have a very short life expectancy and it would be a life filled with hardship.
An exact, or even inexact, estimate of her remaining time isn't realistically possible. The neonatologist said she would probably guess anywhere between a couple of days to a few more days. Days. "So we're not looking at weeks, then?" i asked. She responded that they would monitor Tuesday's condition and how that changed and then perhaps they could tell us more. We were told, though, that she is looking paler and that her breathing is getting more rapid and more shallow. We asked if her puffiness was related to her heart and found out that it is. As it gets harder to get blood flowing around through her body less fluids are going to find their way out of her system. Perhaps you can see it in the pictures but her face is much more swollen than it used to be. What you can't really see is that her extremities are rather swollen too. Before we even asked the doctor told us there was nothing that could be done about that. Lasix wouldn't help her; if she was going to be peeing she'd already be peeing.
And, on a somewhat less eventful note, we've been given a private room in which to stay with her at the hospital. It's ours until we decide to leave. Just in case you were wondering, we're not sitting in the middle of a large nursery crying and bawling, we're by ourselves, it's fairly quiet and there's room enough for all of us to lie down on a pair of side by side cots and go to sleep together.
I'll see if we can't get a picture of her that shows off her beautiful hair a bit more. It's really just the most amazing color.
posted by jonathan @ 4:17 PM
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