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We are Tubies :-)

K

KristenLilysMom

New member
<br>Hello all, We recently inserted a nasogastric tube into our 6 month old daughter. It was a very difficult decision but at 6 months she is only 14 lbs 2 oz and has not had any gain or growth in a month. She is at the top dose of enzymes, is on a PPI and is on thehighestcalorie formula (30kcal/oz) she can be. I know there are lots of you out there that haave been in our shoes, right now they are telling us this is temporary to get her into the 50th percentile - has anyone else been in this position, if so what were the outcomes...tube dependent or independently eating. Thanks!
 
K

KristenLilysMom

New member
<br>Hello all, We recently inserted a nasogastric tube into our 6 month old daughter. It was a very difficult decision but at 6 months she is only 14 lbs 2 oz and has not had any gain or growth in a month. She is at the top dose of enzymes, is on a PPI and is on thehighestcalorie formula (30kcal/oz) she can be. I know there are lots of you out there that haave been in our shoes, right now they are telling us this is temporary to get her into the 50th percentile - has anyone else been in this position, if so what were the outcomes...tube dependent or independently eating. Thanks!
 
C

CJPsMom

New member
Sorry to not respond sooner - been crazy busy at work!<br><br>We're Tubies as well. Your stats are almost the same as our little one was at the same age. We had a g-tube inserted when he was 7 months old. We got to almost 15 pounds and then he started losing weight, so we didn't have many choices. He was already maxed out on enzymes, PPI, and high calorie formula. We were even supplementing the formula with sugar, putting oil in his baby food...we tried everything! <br><br>We've been on the tube now since July 1. The pro - he's doing fantastic in weight. He's now 21 pounds! And the minor developmental delays he was starting to show have been eliminated. The con - he's eating very, very little by mouth. They recommended a very aggressive feeding schedule for him with the tube, so he's become dependent on it for food. We're now working with an occupational therapist to correct this.<br><br>In some ways, we traded one problem for another, but the difference in his energy level, his growth, his development was the most important thing for us. Now, we'll work on the new problem!<br><br>There's a great website for Tubies at www.feedingtubeawareness.org and their facebook page, search for feeding tube awareness is a fantastic resource.<br><br>Good luck and happy growing!<br>
 
C

CJPsMom

New member
Sorry to not respond sooner - been crazy busy at work!<br><br>We're Tubies as well. Your stats are almost the same as our little one was at the same age. We had a g-tube inserted when he was 7 months old. We got to almost 15 pounds and then he started losing weight, so we didn't have many choices. He was already maxed out on enzymes, PPI, and high calorie formula. We were even supplementing the formula with sugar, putting oil in his baby food...we tried everything! <br><br>We've been on the tube now since July 1. The pro - he's doing fantastic in weight. He's now 21 pounds! And the minor developmental delays he was starting to show have been eliminated. The con - he's eating very, very little by mouth. They recommended a very aggressive feeding schedule for him with the tube, so he's become dependent on it for food. We're now working with an occupational therapist to correct this.<br><br>In some ways, we traded one problem for another, but the difference in his energy level, his growth, his development was the most important thing for us. Now, we'll work on the new problem!<br><br>There's a great website for Tubies at www.feedingtubeawareness.org and their facebook page, search for feeding tube awareness is a fantastic resource.<br><br>Good luck and happy growing!<br>
 
G

grantsmom

Guest
My son Grant got his Gtube at 18 months. He was only 21 lbs at the time. He is three now and around 37lbs. It was great to finally have him gaining weight. He eats very little by mouth now. Some days he only drinks pediasure throughout the day. He is very sensitive to different textures and mostly eats only crunchy food. It has gotten bad enough that he is scheduled for a feeding evaluation. The tube is great but it is very sad that he doesn't enjoy food.
 
G

grantsmom

Guest
My son Grant got his Gtube at 18 months. He was only 21 lbs at the time. He is three now and around 37lbs. It was great to finally have him gaining weight. He eats very little by mouth now. Some days he only drinks pediasure throughout the day. He is very sensitive to different textures and mostly eats only crunchy food. It has gotten bad enough that he is scheduled for a feeding evaluation. The tube is great but it is very sad that he doesn't enjoy food.
 
S

sdelorenzo

Guest
My daughter did have an ng tube starting at 5 months of age through 8 months of age. She got the tube because she was eating very little and throwing up what she drank. Turns out it was a milk allergy and all we needed to do was switch to a milk free formula and she started to drink. BUT she was always a terrible eater. She got the mickey button five years ago at age five. Her tube feeding has been SUCH a blessing. No more constantly worrying about how much she eats and how little she weighs, how pale she looks, etc. She has been around the 60% bmi for the past five years. She is very healthy due to the feeding tube. It is stressful to get to the point of getting the external feeding. But to see your once struggling child change into a healthy looking one before your eyes, the concerns of the feeding tube go away.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
S

sdelorenzo

Guest
My daughter did have an ng tube starting at 5 months of age through 8 months of age. She got the tube because she was eating very little and throwing up what she drank. Turns out it was a milk allergy and all we needed to do was switch to a milk free formula and she started to drink. BUT she was always a terrible eater. She got the mickey button five years ago at age five. Her tube feeding has been SUCH a blessing. No more constantly worrying about how much she eats and how little she weighs, how pale she looks, etc. She has been around the 60% bmi for the past five years. She is very healthy due to the feeding tube. It is stressful to get to the point of getting the external feeding. But to see your once struggling child change into a healthy looking one before your eyes, the concerns of the feeding tube go away.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
K

KristenLilysMom

New member
We've been doing supplemental tube feeds for almost 2 weeks, the first week she gained nearly a pound and grew 1 cm. So all the anguish to decide to do it has been well worth it. Weigh in on thursday to see if we have hit her target weight and can discontinue to tube. Sdelorenzo - I agree with the sentiments about not having to stress and worry, I think a G-tube is definitly something I would now consider if she is unable to maintain her weight. We were so worried at the start but with such great results you can't go wrong! \

Thanks All!
 
K

KristenLilysMom

New member
We've been doing supplemental tube feeds for almost 2 weeks, the first week she gained nearly a pound and grew 1 cm. So all the anguish to decide to do it has been well worth it. Weigh in on thursday to see if we have hit her target weight and can discontinue to tube. Sdelorenzo - I agree with the sentiments about not having to stress and worry, I think a G-tube is definitly something I would now consider if she is unable to maintain her weight. We were so worried at the start but with such great results you can't go wrong! \

Thanks All!
 
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