Tuesday, October 17, 2006
Once again a pictureless post. Now there is tons of room on the memory card (thank you all for the extremely concerned calls and e-mails with offers to help us with a problem that actually boils down to us being lazy) but i'm just not motivated enough to take the pictures off the camera and put them on the computer then upload them to Photobucket and blah blah blah. Tomorrow. I'll see what i can do tomorrow.
To answer some questions from the, er, audience.
Breast/bottle feeding: The stitches weren't in the way of either of those things, actually. She was slated to try bottle feeding while we were still at the hospital but before the terminal diagnosis was given. After they told us she was not going to survive everyone lost the impulse to try to get her to feed orally, so that plane never took off. Breast feeding has been tried a few times and she comes so very close that it's heartbreaking. Because of her small lower jaw she has a really hard time getting that seal around the nipple and because of her cleft palette she has a really hard time swallowing. We have another appointment with her pediatrician in another couple of weeks and if she seems like she's still doing well then we will ask about bottle feeding. The difference between bottle and breast feeding for her is that there are different kinds of nipples we can try out, longer ones, shorter ones, soft, hard, large opening, small opening and on and on. So, to recap, breastfeeding has been slightly shy of successful due to lack of sucking and swallowing ability and bottlefeeding has yet to be tried because it's not something we can do, with Tuesday, without better equipment and trained people around to help us.
Genetics: We talked to the genetic counselor on the phone and the news is 90% good with perhaps a 10% content of bad. Maybe even less bad, actually. Our genetic samples didn't help the analysts at the hospital delineate anything more about Tuesday's condition. Translation: our chromosomes are fine. Neither of us has a translocation or a partial deletion or anything of the sort.The 10% or less of bad in this news is that they know nothing more about what our daughter is missing now than they did before they tested our samples. Not a big deal, but having some sort of idea of what we were looking at as far as an amount of missing material is concerned might have been nice. Might have. Maybe it wouldn't. We'll never know. The genetic counselor was very kind and understanding and when she heard that no one had given us any more information about Tuesday than what we got the first time we met with the genetics team she said "would you like me to send you this report i have here, it's got everything we know, with pictures of the chromosomes. Would you like that? I'll just go ahead and do that." Fine by me. The good news, really the only thing we could have heard that would have been at all okay as far as news, was that because neither of us, the parents, have anything that helped them pinpoint Tuesday's condition it means that we shouldn't be at risk of this happening to any other kids we may have. I don't know if that sounds callous, the fact that we have considered having another baby, but it's true. Would i rather simply keep Tuesday? It should go without saying that i would. Would another kid simply be a replacement for Tuesday? No other kid could ever be a replacement for this cute little baby. We just want a baby and i don't think we have to justify that.
For not having any pictures to make it interesting, i think this post is more than long enough now, don't you?
To answer some questions from the, er, audience.
Breast/bottle feeding: The stitches weren't in the way of either of those things, actually. She was slated to try bottle feeding while we were still at the hospital but before the terminal diagnosis was given. After they told us she was not going to survive everyone lost the impulse to try to get her to feed orally, so that plane never took off. Breast feeding has been tried a few times and she comes so very close that it's heartbreaking. Because of her small lower jaw she has a really hard time getting that seal around the nipple and because of her cleft palette she has a really hard time swallowing. We have another appointment with her pediatrician in another couple of weeks and if she seems like she's still doing well then we will ask about bottle feeding. The difference between bottle and breast feeding for her is that there are different kinds of nipples we can try out, longer ones, shorter ones, soft, hard, large opening, small opening and on and on. So, to recap, breastfeeding has been slightly shy of successful due to lack of sucking and swallowing ability and bottlefeeding has yet to be tried because it's not something we can do, with Tuesday, without better equipment and trained people around to help us.
Genetics: We talked to the genetic counselor on the phone and the news is 90% good with perhaps a 10% content of bad. Maybe even less bad, actually. Our genetic samples didn't help the analysts at the hospital delineate anything more about Tuesday's condition. Translation: our chromosomes are fine. Neither of us has a translocation or a partial deletion or anything of the sort.The 10% or less of bad in this news is that they know nothing more about what our daughter is missing now than they did before they tested our samples. Not a big deal, but having some sort of idea of what we were looking at as far as an amount of missing material is concerned might have been nice. Might have. Maybe it wouldn't. We'll never know. The genetic counselor was very kind and understanding and when she heard that no one had given us any more information about Tuesday than what we got the first time we met with the genetics team she said "would you like me to send you this report i have here, it's got everything we know, with pictures of the chromosomes. Would you like that? I'll just go ahead and do that." Fine by me. The good news, really the only thing we could have heard that would have been at all okay as far as news, was that because neither of us, the parents, have anything that helped them pinpoint Tuesday's condition it means that we shouldn't be at risk of this happening to any other kids we may have. I don't know if that sounds callous, the fact that we have considered having another baby, but it's true. Would i rather simply keep Tuesday? It should go without saying that i would. Would another kid simply be a replacement for Tuesday? No other kid could ever be a replacement for this cute little baby. We just want a baby and i don't think we have to justify that.
For not having any pictures to make it interesting, i think this post is more than long enough now, don't you?
posted by jonathan @ 10:03 PM
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