Down with Billi!
Hooray for another good news day! Ellie's billi count is down from 6.7 to 4.1. She is looking MUCH pinker and happier. Her kidney function is also doing better.
Yesterday the PA (Physician's Assistant) asked why Ellie wasn't wearing clothes and in a crib. The nurse on duty said that Phyllis told her Ellie wasn't ready. The PA said, "If Phyllis gives you a bad time, have her talk to me." I wanted to say "NO! Phyllis knows her best and doesn't want her rushed into too much!" But hey,who am I but the lowly mother who knows nothing? So they put her in real clothes (if you can call purple long johns real clothes), wrapped her in blankets, and turned off the warmer.
Hey, it's snowing outside, I need these long johns!
It turned out ok. Ellie lost 30 grams last night, so they think she was using up too many calories to stay warm. She's still in her warming bed. :)
I talked to the cardiologist today. Ellie got an echo yesterday which was a little worse than the one from last week. So what they decided to do was look at the last 3 echocardiograms at the same time to compare them. They all looked pretty much the same. The doctor told me it is hard to get objective results from these things because they are measuring just a slice of the heart, and they can never get the same slice two times in a row. They also take into consideration how Ellie is doing clinically. This means they look at her color, whether she's breathing on her own (she's off the oxygen again, yeah!), alertness, ability to eat, etc. They don't want to jump into just treating the numbers on a computer when she looks so well. However, Dr. Everett (don't worry, I can't keep all these doctors straight either. A new cardiologist every week!) said that they do want to consult with Dr. Cowley about perhaps doing another heart catheter. Ellie's Aortic Stenosis is now a milder case, but the valve is still quite blocked. This makes it hard for the heart to get the blood she needs through to her body. Doing another heart cath is tricky, because they don't want to make it so big the blood leaks back into the ventricle.
Chad and I both got to feed Ellie today.
The nurse fed her this morning, but forgot to vent the ng (feeding) tube, so Ellie threw it right back up. Venting her tube makes it so she doesn't have so many air bubbles in her tummy...my kids have all had problems with air bubbles and burping...we called Harrison the Spit Up King. She did much better with her parents feeding her :) The girl can down 25 cc's in 5 minutes with burping breaks!
I have some pictures from yesterday and today. She is getting to be more and more fun!
Hey, I look like a real baby!
I need a tailor! These sleeves have GOT to go!
Could I BE any cuter?
Easy, breezy, beautiful, Cover girl!
Yesterday the PA (Physician's Assistant) asked why Ellie wasn't wearing clothes and in a crib. The nurse on duty said that Phyllis told her Ellie wasn't ready. The PA said, "If Phyllis gives you a bad time, have her talk to me." I wanted to say "NO! Phyllis knows her best and doesn't want her rushed into too much!" But hey,who am I but the lowly mother who knows nothing? So they put her in real clothes (if you can call purple long johns real clothes), wrapped her in blankets, and turned off the warmer.
Hey, it's snowing outside, I need these long johns!
It turned out ok. Ellie lost 30 grams last night, so they think she was using up too many calories to stay warm. She's still in her warming bed. :)
I talked to the cardiologist today. Ellie got an echo yesterday which was a little worse than the one from last week. So what they decided to do was look at the last 3 echocardiograms at the same time to compare them. They all looked pretty much the same. The doctor told me it is hard to get objective results from these things because they are measuring just a slice of the heart, and they can never get the same slice two times in a row. They also take into consideration how Ellie is doing clinically. This means they look at her color, whether she's breathing on her own (she's off the oxygen again, yeah!), alertness, ability to eat, etc. They don't want to jump into just treating the numbers on a computer when she looks so well. However, Dr. Everett (don't worry, I can't keep all these doctors straight either. A new cardiologist every week!) said that they do want to consult with Dr. Cowley about perhaps doing another heart catheter. Ellie's Aortic Stenosis is now a milder case, but the valve is still quite blocked. This makes it hard for the heart to get the blood she needs through to her body. Doing another heart cath is tricky, because they don't want to make it so big the blood leaks back into the ventricle.
Chad and I both got to feed Ellie today.
The nurse fed her this morning, but forgot to vent the ng (feeding) tube, so Ellie threw it right back up. Venting her tube makes it so she doesn't have so many air bubbles in her tummy...my kids have all had problems with air bubbles and burping...we called Harrison the Spit Up King. She did much better with her parents feeding her :) The girl can down 25 cc's in 5 minutes with burping breaks!
I have some pictures from yesterday and today. She is getting to be more and more fun!
Hey, I look like a real baby!
I need a tailor! These sleeves have GOT to go!
Could I BE any cuter?
Easy, breezy, beautiful, Cover girl!
posted by Lilacmusic | 11:13 PM
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