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| Aaron
earned the first turn to meet Audrey by good behavior with
Grandparents. I am changing her diaper and doing her "cares" in
preparation to take her out of the crib and let him hold her. He is so
excited! |
A big, big day! For the first time, Audrey got to meet two of her big brothers and her big sister! She smiled when Aaron John talked to her, and she slept peacefully in both Eden and JJ's arms. Eden said that holding her was "Amazing." JJ says, "She's super cute." Big photo opp. All the kids and Baby Gideon love the playroom we've discovered on the next floor down, and don't mind waiting their turn. (Because the youngest age of permitted visitors is two years old, Gideon won't be permitted to visit Audrey at her bedside. He doesn't seem to mind, though it breaks my heart, but I just can't allow myself to think about it. If he was able to come, I would be able to be with both of them in the daytimes, bring him with me on my visits.... but then I wouldn't be keeping as much attention on her needs, and he would want to play and move around more than would be safe; I do understand, it's just hard.)
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At "rounds" today (the daily chat with a core committee of doctors and specialists at Audrey's bedside) I shared with them a scary experience I had yesterday with her Replogle backing up--which happens often, but usually we catch it pretty fast, except that this time we didn't and it backed up all the way to where her saliva pooled up into her mouth--and the terror in her little eyes as she couldn't breathe for a few seconds as spit bubbles appeared on her lips. I had quickly turned her on her side and gotten things cleared with the help of the nurse, but it is scary to think that that could happen any time when a nurse was busy with the crib next door or something (we are in sort of a cubicle there) and that there is no alarm to let them know when it backs up. The saliva at the bottom of her throat is often very thick and mixed with mucous-y gunk, so the tube gets clogged pretty often, usually every two hours or less, and it can happen without warning. There is one alarm that would go off eventually, but not until she was literally unable to breathe for about thirty seconds, and even that alarm sometimes can be misleading and sound frequent false alarms caused by a number of things, so it could be a while before they would know it was a real emergency. Plus right now they are really encouraging her to get lots of deep sleep for her growth and healing, and trying to let her be as much as possible especially at night, so her crib is usually a quiet, restful place and she can be deceivingly low-maintenance. Super scary when you think about it, especially if you imagine it from her eyes the way I saw it that day. Anyway, a note was added to the nurse's instructions to try to check it every 30 minutes instead of 60, and it's another one of those things we are just going to have to trust them to do since we can't be there all the time to watch it. We also got approval to try putting just a tiny amount of water down her tube to thin those secretions when it is clogged and caught very early (which is 99% of the time, we often have warning because there is a little bubbler attached to the tube and usually we'll just see it has stopped bubbling or isn't bubbling very strong), and un-gooping the tube with a quick little shot of water is something Justin has wanted to try for some time-- they said they would give it a try and keep track of what worked and what didn't, and hopefully come up with a specific plan and method that could be "prescribed" for her care.
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| Aaron has always wanted a baby sister, and holding her for the first time made it officially real. His dream had come true. |
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| J.J.'s turn! |
JJ was so tender and sweet with her. Finally, Eden got her turn.
Eden
called the experience of meeting and holding her baby sister for the
first time, "Amazing," with a sweet tone of reverence in her voice. It was really
special to see her reaction that way, because she shares my
needle-phobia and was originally nervous to see her with the tubes and
wires.
At "rounds" today (the daily chat with a core committee of doctors and specialists at Audrey's bedside) I shared with them a scary experience I had yesterday with her Replogle backing up--which happens often, but usually we catch it pretty fast, except that this time we didn't and it backed up all the way to where her saliva pooled up into her mouth--and the terror in her little eyes as she couldn't breathe for a few seconds as spit bubbles appeared on her lips. I had quickly turned her on her side and gotten things cleared with the help of the nurse, but it is scary to think that that could happen any time when a nurse was busy with the crib next door or something (we are in sort of a cubicle there) and that there is no alarm to let them know when it backs up. The saliva at the bottom of her throat is often very thick and mixed with mucous-y gunk, so the tube gets clogged pretty often, usually every two hours or less, and it can happen without warning. There is one alarm that would go off eventually, but not until she was literally unable to breathe for about thirty seconds, and even that alarm sometimes can be misleading and sound frequent false alarms caused by a number of things, so it could be a while before they would know it was a real emergency. Plus right now they are really encouraging her to get lots of deep sleep for her growth and healing, and trying to let her be as much as possible especially at night, so her crib is usually a quiet, restful place and she can be deceivingly low-maintenance. Super scary when you think about it, especially if you imagine it from her eyes the way I saw it that day. Anyway, a note was added to the nurse's instructions to try to check it every 30 minutes instead of 60, and it's another one of those things we are just going to have to trust them to do since we can't be there all the time to watch it. We also got approval to try putting just a tiny amount of water down her tube to thin those secretions when it is clogged and caught very early (which is 99% of the time, we often have warning because there is a little bubbler attached to the tube and usually we'll just see it has stopped bubbling or isn't bubbling very strong), and un-gooping the tube with a quick little shot of water is something Justin has wanted to try for some time-- they said they would give it a try and keep track of what worked and what didn't, and hopefully come up with a specific plan and method that could be "prescribed" for her care.
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