Thursday, September 14, 2006
Not a lot went on today. We got no real news about Tuesday and her condition has not significantly changed. She is lying in her little bed, bundled up, little sensors stuck onto her all over, a PIC line in her ankle, a horribly uncomfortable breathing apparatus keeping her lungs doing their thing.
We're waiting for information from the MRI that can't get done until her breathing stabilizes. We're waiting to get the results of another echo-cardiograph that the neonatologist ordered to see what's going on with her heart. Again. We're unsure how much the Lasix did for the fluid in her lungs. The neonatologist said it looked like there was a bit less fluid in her lungs today but it was difficult to be sure.
Three positive things about today, actually. First, we got to hold Tuesday again. This means so much to us i can't even find adequate words. Standing next to her, unable to pick her up, seeing her squirm and try to cry is one of the most difficult things i am forced to endure in all this. Holding her in my arms, feeling her breathing, having her visibly calm down in response to being picked up and rocked almost makes it possible to forget all the overwhelming difficulties that will permeate our future. To quote Christine, "she's a very snuggly baby." I could very easily spend the day with her asleep in my arms and go to bed that night a satisfied man.
Then there is the fact that she does seem a bit better today than yesterday or, certainly, the day before. Her breathing is a bit slower and seemed, to me at least, a bit deeper. The amount of oxygen getting mixed into her air was a bit lower and she kept a steady level of oxygen in her blood the whole time we were there with her, which was a few hours. Could there be a connection between the slight improvement in her breathing and the smaller amount of fluid in her lungs? I don't know and i don't care to get optimistic about it.
Lastly, the neonatologist (i should mention that there are actually multiple neonatologists but i'm not going to distinguish between them because they're anonymous anyway) has decided to start her feedings again. There's something immensely comforting in the knowledge that Tuesday is going to be getting some milk from mom and, not less important, she has been losing weight for the last couple of days. They'll start her off slowly at first and then see if perhaps they can't get her up to a decent enough amount that her IV is no longer needed. Based on past experience, Christine and i are hoping that they take it just a bit slower than they have in the past because rushing things with this baby just doesn't seem to work out very well.
This post was supposed to be small. So small in fact that just to fluff it up we (meaning "i") were (i guess meaning "was") going to put up a bunch of pictures. I'm going to put up a bunch of pictures anyway because we both want everyone to see how amazingly cute and wonderful she looked before this last setback.
Here we are with her today to start things off. It's depressing how little of her is actually visible amongst all the stuff she has on these days.
Here she is two days ago, September 12,2006. Tuesday on Tuesday, you could say.
Here she is on September 11, 2006. I think this was the beginning of the slide downward that didn't get really alarming until the next day.
This is Tuesday on September 10, 2006.
Tuesday on September 9, 2006. She was so amazingly cute. I took a video of it. I have no idea how to get that video to interested parties but i'm sure we could work something out.
September 8, 2006. A bit fuzzy. Sorry, i was a bit distracted at the time what with the fact that my baby daughter was checking me out.
September 7, 2006. You can almost see that the swelling in her tongue has become almost unnoticeable. Almost.
September 6, 2006. It's a burrito! Oh, no, i'm sorry, it's actually a baby. Sorry, sir, i'll see that you get your order right way.
September 5, 2006.
September 4, 2006. This was the day we got to hold Tuesday for the first time. She was a week old.
September 3, 2006. Tuesday had just had her lip-tongue adhesion surgery done, hence the extremely swollen tongue in this shot. Not pretty. I can't imagine how it might have felt. This is also a good picture of one of her pinkies, most likely another symptom of her missing chunk of chromosome.
September 2, 2006. We can see the almost jaundiced condition of the baby in this picture. That, at least, has cleared up at this point.
September 1, 2006.
August 31, 2006.
August 30, 2006. I'm not sure, but i think the inspiration to start taking her picture was strongly encouraged by the presence of a little pink bow on her pretty little head.
We're waiting for information from the MRI that can't get done until her breathing stabilizes. We're waiting to get the results of another echo-cardiograph that the neonatologist ordered to see what's going on with her heart. Again. We're unsure how much the Lasix did for the fluid in her lungs. The neonatologist said it looked like there was a bit less fluid in her lungs today but it was difficult to be sure.
Three positive things about today, actually. First, we got to hold Tuesday again. This means so much to us i can't even find adequate words. Standing next to her, unable to pick her up, seeing her squirm and try to cry is one of the most difficult things i am forced to endure in all this. Holding her in my arms, feeling her breathing, having her visibly calm down in response to being picked up and rocked almost makes it possible to forget all the overwhelming difficulties that will permeate our future. To quote Christine, "she's a very snuggly baby." I could very easily spend the day with her asleep in my arms and go to bed that night a satisfied man.
Then there is the fact that she does seem a bit better today than yesterday or, certainly, the day before. Her breathing is a bit slower and seemed, to me at least, a bit deeper. The amount of oxygen getting mixed into her air was a bit lower and she kept a steady level of oxygen in her blood the whole time we were there with her, which was a few hours. Could there be a connection between the slight improvement in her breathing and the smaller amount of fluid in her lungs? I don't know and i don't care to get optimistic about it.
Lastly, the neonatologist (i should mention that there are actually multiple neonatologists but i'm not going to distinguish between them because they're anonymous anyway) has decided to start her feedings again. There's something immensely comforting in the knowledge that Tuesday is going to be getting some milk from mom and, not less important, she has been losing weight for the last couple of days. They'll start her off slowly at first and then see if perhaps they can't get her up to a decent enough amount that her IV is no longer needed. Based on past experience, Christine and i are hoping that they take it just a bit slower than they have in the past because rushing things with this baby just doesn't seem to work out very well.
This post was supposed to be small. So small in fact that just to fluff it up we (meaning "i") were (i guess meaning "was") going to put up a bunch of pictures. I'm going to put up a bunch of pictures anyway because we both want everyone to see how amazingly cute and wonderful she looked before this last setback.
Here we are with her today to start things off. It's depressing how little of her is actually visible amongst all the stuff she has on these days.
Here she is two days ago, September 12,2006. Tuesday on Tuesday, you could say.
Here she is on September 11, 2006. I think this was the beginning of the slide downward that didn't get really alarming until the next day.
This is Tuesday on September 10, 2006.
Tuesday on September 9, 2006. She was so amazingly cute. I took a video of it. I have no idea how to get that video to interested parties but i'm sure we could work something out.
September 8, 2006. A bit fuzzy. Sorry, i was a bit distracted at the time what with the fact that my baby daughter was checking me out.
September 7, 2006. You can almost see that the swelling in her tongue has become almost unnoticeable. Almost.
September 6, 2006. It's a burrito! Oh, no, i'm sorry, it's actually a baby. Sorry, sir, i'll see that you get your order right way.
September 5, 2006.
September 4, 2006. This was the day we got to hold Tuesday for the first time. She was a week old.
September 3, 2006. Tuesday had just had her lip-tongue adhesion surgery done, hence the extremely swollen tongue in this shot. Not pretty. I can't imagine how it might have felt. This is also a good picture of one of her pinkies, most likely another symptom of her missing chunk of chromosome.
September 2, 2006. We can see the almost jaundiced condition of the baby in this picture. That, at least, has cleared up at this point.
September 1, 2006.
August 31, 2006.
August 30, 2006. I'm not sure, but i think the inspiration to start taking her picture was strongly encouraged by the presence of a little pink bow on her pretty little head.
posted by jonathan @ 6:39 PM
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