Infant Nutrition

K

KristenLilysMom

New member
She gained a POUND!! Hooray, she is now sitting just below the 15th percentile (Weight: 12lbs 12oz, Length: 24.4"). Because she gained weight we can now increase her enzymes and hopefully get some better looking stool, the Doc want us to take pictures of it so he can see what's going on, lucky him :)
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<br />P.S. Lily rolled over for the first time today while on the examining table, good thing Mommy and Daddy were paying attention!
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K

KristenLilysMom

New member
Update - Crummy visit to the clinic, so many ups and downs on this ride! Lily had no weight gain and grew only 1/2 cm. So at 6 months old we are sitting back at the 15th percentile for weight/height. We are to start a PPI this week and go for a weight recheck in week. If she hasn't gained a sufficiant amount they want her to start on night tube feeds to get her into the 50th percentile. Her stools continue to the "yucky" she is still at the top dose of enzymes and they do not want to increase them any further due to potential damage to her colon, and is drinking 30 calories/oz formula which also can not be increased any further due to osmilarity(?). What are people's experiences with tube feeds...it sounds really scary but I am hoping the benefits outweigh the "scariness" I think what bothers me most is that once there is a tube in her nose she will 'look' sick. how do other people react to you and your child? Not looking forward to fielding questions from rude, ignorant people. Hopefully none of this will be needed but I like to be prepared.
 
K

KristenLilysMom

New member
Update - Crummy visit to the clinic, so many ups and downs on this ride! Lily had no weight gain and grew only 1/2 cm. So at 6 months old we are sitting back at the 15th percentile for weight/height. We are to start a PPI this week and go for a weight recheck in week. If she hasn't gained a sufficiant amount they want her to start on night tube feeds to get her into the 50th percentile. Her stools continue to the "yucky" she is still at the top dose of enzymes and they do not want to increase them any further due to potential damage to her colon, and is drinking 30 calories/oz formula which also can not be increased any further due to osmilarity(?). What are people's experiences with tube feeds...it sounds really scary but I am hoping the benefits outweigh the "scariness" I think what bothers me most is that once there is a tube in her nose she will 'look' sick. how do other people react to you and your child? Not looking forward to fielding questions from rude, ignorant people. Hopefully none of this will be needed but I like to be prepared.
 
K

KristenLilysMom

New member
Update - Crummy visit to the clinic, so many ups and downs on this ride! Lily had no weight gain and grew only 1/2 cm. So at 6 months old we are sitting back at the 15th percentile for weight/height. We are to start a PPI this week and go for a weight recheck in week. If she hasn't gained a sufficiant amount they want her to start on night tube feeds to get her into the 50th percentile. Her stools continue to the "yucky" she is still at the top dose of enzymes and they do not want to increase them any further due to potential damage to her colon, and is drinking 30 calories/oz formula which also can not be increased any further due to osmilarity(?). What are people's experiences with tube feeds...it sounds really scary but I am hoping the benefits outweigh the "scariness" I think what bothers me most is that once there is a tube in her nose she will 'look' sick. how do other people react to you and your child? Not looking forward to fielding questions from rude, ignorant people. Hopefully none of this will be needed but I like to be prepared.
 
C

CJPsMom

New member
I'm a tubie Mom, so I'll offer some thoughts based on our experience.<br><br>Our LO has had problems gaining weight since day 1. By the time he was 6 months, he was still just over 14 pounds and our clinic recommended a feeding tube. We decided not to go with the ng tube (through the nose) because we weren't comfortable with what that would mean on a daily basis for him and we had already been through all of that in the NICU.<br><br>We opted for a g-tube. It's a very quick procedure and we've seen positives and negatives. The best is that at 1 year old, he's now on the growth charts, consistently gaining and went from not on the length chart to being in the 20-25th percentile. He had also started to experience some developmental delays - those have been eliminated as well. He's now 20 lbs and about 8 oz.<br><br>Having the procedure done also turned up another problem that was hurting his eating - eosinophilic esophagitus - basically an internal allergic reaction - it's either dairy or soy - we don't know what yet. Between this dx and the tube feeds is the bad - our son is now largely tube dependent. He eats very, very little but does show interest in food and we're working with an Occupational Therapist to get him eating.<br><br>Some other places to check for information are feedingtubeawareness.org - great, helpful people and check out their facebook page. Great tips and you'll find that becoming a tubie parent isn't the end of the world.<br><br>If you have any questions, feel free to PM me.<br><br>Hang in there!<br>
 
C

CJPsMom

New member
I'm a tubie Mom, so I'll offer some thoughts based on our experience.<br><br>Our LO has had problems gaining weight since day 1. By the time he was 6 months, he was still just over 14 pounds and our clinic recommended a feeding tube. We decided not to go with the ng tube (through the nose) because we weren't comfortable with what that would mean on a daily basis for him and we had already been through all of that in the NICU.<br><br>We opted for a g-tube. It's a very quick procedure and we've seen positives and negatives. The best is that at 1 year old, he's now on the growth charts, consistently gaining and went from not on the length chart to being in the 20-25th percentile. He had also started to experience some developmental delays - those have been eliminated as well. He's now 20 lbs and about 8 oz.<br><br>Having the procedure done also turned up another problem that was hurting his eating - eosinophilic esophagitus - basically an internal allergic reaction - it's either dairy or soy - we don't know what yet. Between this dx and the tube feeds is the bad - our son is now largely tube dependent. He eats very, very little but does show interest in food and we're working with an Occupational Therapist to get him eating.<br><br>Some other places to check for information are feedingtubeawareness.org - great, helpful people and check out their facebook page. Great tips and you'll find that becoming a tubie parent isn't the end of the world.<br><br>If you have any questions, feel free to PM me.<br><br>Hang in there!<br>
 
C

CJPsMom

New member
I'm a tubie Mom, so I'll offer some thoughts based on our experience.<br><br>Our LO has had problems gaining weight since day 1. By the time he was 6 months, he was still just over 14 pounds and our clinic recommended a feeding tube. We decided not to go with the ng tube (through the nose) because we weren't comfortable with what that would mean on a daily basis for him and we had already been through all of that in the NICU.<br><br>We opted for a g-tube. It's a very quick procedure and we've seen positives and negatives. The best is that at 1 year old, he's now on the growth charts, consistently gaining and went from not on the length chart to being in the 20-25th percentile. He had also started to experience some developmental delays - those have been eliminated as well. He's now 20 lbs and about 8 oz.<br><br>Having the procedure done also turned up another problem that was hurting his eating - eosinophilic esophagitus - basically an internal allergic reaction - it's either dairy or soy - we don't know what yet. Between this dx and the tube feeds is the bad - our son is now largely tube dependent. He eats very, very little but does show interest in food and we're working with an Occupational Therapist to get him eating.<br><br>Some other places to check for information are feedingtubeawareness.org - great, helpful people and check out their facebook page. Great tips and you'll find that becoming a tubie parent isn't the end of the world.<br><br>If you have any questions, feel free to PM me.<br><br>Hang in there!<br>
 
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