Inflicted sabbatical
I haven't posted in over a month, not because I haven't wanted to, but because the blogger site we use is upgrading and changing things and blocked us out of the normal way to logon. So I sincerely apologize to all those who think we have stopped blogging. It took a while to figure out how to get around the new system.
Anyway, LOTS to update everyone on about Ellie. (Pictures will be added later. We can't upload them yet.)
First of all, Ellie is off the NJ tube! Hooray for us! She has been on an NG tube for a month now. We can't get her completely tube-free until she eats enough to consistently gain weight. When she came off the NJ tube, she started taking 48 cc's by bottle each feeding. She got up to where she would eat between 40-90 cc's at a time...and once 110 cc's! When we went to the Dysphagia (eating) clinic on the 16th, Dr. Molly couldn't believe it when she saw my records of Ellie's feedings. She said, "This isn't right." It startled me because I have been VERY meticulous about keeping track of every bit of food that little girl gets. Dr. Molly then said again, "This isn't right. She doesn't eat like this!" I just smiled and said, "She is now!" So....Dr. Molly took Ellie off the feeding pump completely and now I only have to supplement whatever Ellie won't bottle feed through the tube by gavage feedings (through a syringe into the NG tube).
Ok, next is Ellie's last cardiology appointment that was on August 4th. She had an echocardiogram, an EKG, and other stuff no child should have to sit in a hospital for four hours going through. Dr. Cowley said that her heart function is a little worse than it was when she was discharged from the NICU. Her shortening fraction is down to 17% from 24 % and her ejection fraction is down to 55% from 65%. Dr. Cowley said he's never seen a heart fluctuate like that. He said that hearts will do whatever improvement they get to, and then plateau. So, he put her back on the digoxin to try to get her heart pumping stronger again and we are going in on the 8th of Sept. to go over options again. Ellie is scheduled for another heart cath with the balloon on Sept 21, but Dr. Cowley is going to check her out very closely on the 8th to see if that is really what needs to happen, or if they should do the valve replacement sooner than planned. That would mean open heart surgery. Chad and I are trying to remain calm because of how many times the doctors have jumped the gun on her and given worst-case scenario and then come to find out she's doing much better than they thought.
Clinically, Ellie looks fantastic. She is pink to the tips of her fingers and toes, smiles, laughs, wiggles, rolls over, "talks" and does everything a baby her age is supposed to do. Early Intervention came and checked her over and informed us that she is right on track for her age group as far as her development goes. They said that it is amazing that she is so alert and active because she was a preemie and she spent so much time in the hospital. Most babies like her are much further behind developmentally. She just has to work on her eating!
I have been taking Ellie out in the evenings for walks in the stroller after it cools down a little bit. I have a mosquito net that goes over her seat to keep out the bugs and the kids and the over-eager adults. She is finishing up her 3 month isolation period, so we are going to bless her in church on Sunday. Of course, we will leave right after the meeting is over, but she will get to go. It doesn't matter that she's almost 6 months old, right?
I keep forgetting that she is 5 1/2 months old. I've only had her home a little over 2 months, so I feel that she should still be a little tiny baby and I should have more little tiny baby time with her. Despite her age and activity level, she is only 12 lbs 1 oz. She is 25 inches long though! She's 50% for her height and 20% for her weight. So average height, low weight. Dr. Molly says Ellie should be 15 or 16 pounds. Oy. I'm struggling with getting enough food down her to pack on the weight, but whatever calories she doesn't burn up playing, go straight to her height! AND how do you force feed someone who is just finally showing some serious interest in eating and then starts to cut teeth??? No joke. Five months old (supposed to be 4!)and cutting teeth. I didn't expect it this early. The boys didn't start until they were 7 and 9 months old. But bless Ellie's heart, she doesn't cry that much. Even when she's hurting.
Okay. I think I've crammed all the important things in. Look for pictures soon (I hope!) Thank you all for your patience!
Anyway, LOTS to update everyone on about Ellie. (Pictures will be added later. We can't upload them yet.)
First of all, Ellie is off the NJ tube! Hooray for us! She has been on an NG tube for a month now. We can't get her completely tube-free until she eats enough to consistently gain weight. When she came off the NJ tube, she started taking 48 cc's by bottle each feeding. She got up to where she would eat between 40-90 cc's at a time...and once 110 cc's! When we went to the Dysphagia (eating) clinic on the 16th, Dr. Molly couldn't believe it when she saw my records of Ellie's feedings. She said, "This isn't right." It startled me because I have been VERY meticulous about keeping track of every bit of food that little girl gets. Dr. Molly then said again, "This isn't right. She doesn't eat like this!" I just smiled and said, "She is now!" So....Dr. Molly took Ellie off the feeding pump completely and now I only have to supplement whatever Ellie won't bottle feed through the tube by gavage feedings (through a syringe into the NG tube).
Ok, next is Ellie's last cardiology appointment that was on August 4th. She had an echocardiogram, an EKG, and other stuff no child should have to sit in a hospital for four hours going through. Dr. Cowley said that her heart function is a little worse than it was when she was discharged from the NICU. Her shortening fraction is down to 17% from 24 % and her ejection fraction is down to 55% from 65%. Dr. Cowley said he's never seen a heart fluctuate like that. He said that hearts will do whatever improvement they get to, and then plateau. So, he put her back on the digoxin to try to get her heart pumping stronger again and we are going in on the 8th of Sept. to go over options again. Ellie is scheduled for another heart cath with the balloon on Sept 21, but Dr. Cowley is going to check her out very closely on the 8th to see if that is really what needs to happen, or if they should do the valve replacement sooner than planned. That would mean open heart surgery. Chad and I are trying to remain calm because of how many times the doctors have jumped the gun on her and given worst-case scenario and then come to find out she's doing much better than they thought.
Clinically, Ellie looks fantastic. She is pink to the tips of her fingers and toes, smiles, laughs, wiggles, rolls over, "talks" and does everything a baby her age is supposed to do. Early Intervention came and checked her over and informed us that she is right on track for her age group as far as her development goes. They said that it is amazing that she is so alert and active because she was a preemie and she spent so much time in the hospital. Most babies like her are much further behind developmentally. She just has to work on her eating!
I have been taking Ellie out in the evenings for walks in the stroller after it cools down a little bit. I have a mosquito net that goes over her seat to keep out the bugs and the kids and the over-eager adults. She is finishing up her 3 month isolation period, so we are going to bless her in church on Sunday. Of course, we will leave right after the meeting is over, but she will get to go. It doesn't matter that she's almost 6 months old, right?
I keep forgetting that she is 5 1/2 months old. I've only had her home a little over 2 months, so I feel that she should still be a little tiny baby and I should have more little tiny baby time with her. Despite her age and activity level, she is only 12 lbs 1 oz. She is 25 inches long though! She's 50% for her height and 20% for her weight. So average height, low weight. Dr. Molly says Ellie should be 15 or 16 pounds. Oy. I'm struggling with getting enough food down her to pack on the weight, but whatever calories she doesn't burn up playing, go straight to her height! AND how do you force feed someone who is just finally showing some serious interest in eating and then starts to cut teeth??? No joke. Five months old (supposed to be 4!)and cutting teeth. I didn't expect it this early. The boys didn't start until they were 7 and 9 months old. But bless Ellie's heart, she doesn't cry that much. Even when she's hurting.
Okay. I think I've crammed all the important things in. Look for pictures soon (I hope!) Thank you all for your patience!
posted by Lilacmusic | 10:20 PM
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