Slow and steady wins the race
We started the day coming in and not being able to find the cardiologist to get the results of today's echocardiogram. I was disappointed to find out that Dr. Arrington gave the echo and we didn't get to talk to him.
Some fun things happened while we were waiting though. I've been taking the nurses stethoscope lately, whenever I get the chance, and listening to her heart. It sounded a bit like a washing machine churning. Today though there was a striking difference. You could almost run a marching band by the thump of that little heart today. Her heart murmur was just about gone. It was amazing to hear.
Another fun thing. She was squirming around like crazy and I couldn't figure out why until I realized that she was rooting for my finger. She started chomping on it like crazy. I started to get worried, even though I knew my hands were clean, and we got her a little mini pacifier. Its formed to fit around her breathing tube, but it doesn't fit that well. Teri came in and was elated that she was rooting. She said it made her milk run. Well... I don't know anything about that, but it made me happy too.
[Ellie rooting pic.. maybe video?]
We finally got a hold of Dr. Ethridge. She said that the PDA has gotten a lot smaller now she's off the prostaglandin. Her ejection fraction is 20%. They've seen as high as 24% and as low as 8% on Ellie. The ejection fraction is the volume of blood that she pushes out on each beat. 55-60% is normal.
She also has an active pericardium. This has been a favorite of mine since she's been born. You can see her little heart beating through her skin just below her ribs. They thought that this might diminish as she came off the PGE's, but so far it hasn't.
[I'll try to get my active pericardium video up here]
Some fun things happened while we were waiting though. I've been taking the nurses stethoscope lately, whenever I get the chance, and listening to her heart. It sounded a bit like a washing machine churning. Today though there was a striking difference. You could almost run a marching band by the thump of that little heart today. Her heart murmur was just about gone. It was amazing to hear.
Another fun thing. She was squirming around like crazy and I couldn't figure out why until I realized that she was rooting for my finger. She started chomping on it like crazy. I started to get worried, even though I knew my hands were clean, and we got her a little mini pacifier. Its formed to fit around her breathing tube, but it doesn't fit that well. Teri came in and was elated that she was rooting. She said it made her milk run. Well... I don't know anything about that, but it made me happy too.
[Ellie rooting pic.. maybe video?]
We finally got a hold of Dr. Ethridge. She said that the PDA has gotten a lot smaller now she's off the prostaglandin. Her ejection fraction is 20%. They've seen as high as 24% and as low as 8% on Ellie. The ejection fraction is the volume of blood that she pushes out on each beat. 55-60% is normal.
She also has an active pericardium. This has been a favorite of mine since she's been born. You can see her little heart beating through her skin just below her ribs. They thought that this might diminish as she came off the PGE's, but so far it hasn't.
[I'll try to get my active pericardium video up here]
posted by paqogomez | 2:57 PM
1 Comments:
I'm sorry that my verses bummed you out. In point of fact, I was pretty bummed myself at the time. What you cannot know from reading them is I underwent open heart surgery just three years ago during which they performed a triple bypass. Repairs to an infant's stenosis has a much better long term prognosis than do I or others like me with similar complications. Just the luck of the draw.
I am saddened by the fact your daughter is so very sick. It is exceedingly difficult as a parent to have a mortally sick child. I have been in those shoes and it is a situation I would not wish on anyone.
I don't know much about congenital cardiogenic defects in infants. An acquaintance who does, has written extensively in her private journal on AOL about her daughter Maggie's experiences. If you'd send your email addy to me at olddog299 no-spam@here@ gmail dot com, I will forward it on to her, if you wish.
Good luck to you all. I'm rooting for you.
wil
On 3/16/06, paqogomez "noreply-comment@blogger.com" wrote:
My little girl was diagnosed with congenital critical aortic stenosis. They were able to fix the stenosis with a catheterization very easily IMO. Her problem now is that the left ventricle was damaged and is not beating well. Your grim poem made me very sad in a time when I'm trying to be upbeat. Its hard to read something like that when you're hoping for the life of a baby girl. (elliedawn.blogspot.com)
That sounds a bit down... sorry about that ;)
I wish you the best in whatever route fixes the stenosis. G'luck!
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Posted by paqogomez to Snoozelets at 3/16/2006 12:40:55 PM
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