Q's about G-Tubes

jacksmom · Oct 15, 2007

Was you daughter born with Meconium Ileus? My son was and we were in the hospital for 4 1/2 months and he ended up having five surgeries, with g-tube placement on the fifth.
He is 13 months old and we are having sever feeding issues. He won't really eat at all. If he gets hungry he will suck on crackers or toast but doesn't actually eat anything. He has such a feeding adversion to a spoon that the when you try to feed him with it he gags and vomits.
His weight isn't even on the growth chart, he is only 18 pounds. He looks okay until you see him next to my nephew who is four weeks younger. He is up in the 90th percentile, over 25 pounds, and you can really see how little my son is.

When you say your daughter won't eat does she spit out the food? Does she gag and vomit? Have you tried giving her crackers or other finger foods that she can pick up and eat on her own? Does she take anything from a bottle, or sippy cup?
How do you do her enzymes when she doesn't eat? Powdered Viokase? That is what we ended up doing. What kind of suppliment is she on? Pediasure, or something more easily digested? My son is on Peptamen.

Sorry for all the questions, it just seems like you daughter is somewhat like my son.
Hope something here helps,
Carey

jacksmom · Oct 15, 2007

Was you daughter born with Meconium Ileus? My son was and we were in the hospital for 4 1/2 months and he ended up having five surgeries, with g-tube placement on the fifth.
He is 13 months old and we are having sever feeding issues. He won't really eat at all. If he gets hungry he will suck on crackers or toast but doesn't actually eat anything. He has such a feeding adversion to a spoon that the when you try to feed him with it he gags and vomits.
His weight isn't even on the growth chart, he is only 18 pounds. He looks okay until you see him next to my nephew who is four weeks younger. He is up in the 90th percentile, over 25 pounds, and you can really see how little my son is.

When you say your daughter won't eat does she spit out the food? Does she gag and vomit? Have you tried giving her crackers or other finger foods that she can pick up and eat on her own? Does she take anything from a bottle, or sippy cup?
How do you do her enzymes when she doesn't eat? Powdered Viokase? That is what we ended up doing. What kind of suppliment is she on? Pediasure, or something more easily digested? My son is on Peptamen.

Sorry for all the questions, it just seems like you daughter is somewhat like my son.
Hope something here helps,
Carey

jacksmom · Oct 15, 2007

Was you daughter born with Meconium Ileus? My son was and we were in the hospital for 4 1/2 months and he ended up having five surgeries, with g-tube placement on the fifth.
He is 13 months old and we are having sever feeding issues. He won't really eat at all. If he gets hungry he will suck on crackers or toast but doesn't actually eat anything. He has such a feeding adversion to a spoon that the when you try to feed him with it he gags and vomits.
His weight isn't even on the growth chart, he is only 18 pounds. He looks okay until you see him next to my nephew who is four weeks younger. He is up in the 90th percentile, over 25 pounds, and you can really see how little my son is.

When you say your daughter won't eat does she spit out the food? Does she gag and vomit? Have you tried giving her crackers or other finger foods that she can pick up and eat on her own? Does she take anything from a bottle, or sippy cup?
How do you do her enzymes when she doesn't eat? Powdered Viokase? That is what we ended up doing. What kind of suppliment is she on? Pediasure, or something more easily digested? My son is on Peptamen.

Sorry for all the questions, it just seems like you daughter is somewhat like my son.
Hope something here helps,
Carey

jacksmom · Oct 15, 2007

Was you daughter born with Meconium Ileus? My son was and we were in the hospital for 4 1/2 months and he ended up having five surgeries, with g-tube placement on the fifth.
He is 13 months old and we are having sever feeding issues. He won't really eat at all. If he gets hungry he will suck on crackers or toast but doesn't actually eat anything. He has such a feeding adversion to a spoon that the when you try to feed him with it he gags and vomits.
His weight isn't even on the growth chart, he is only 18 pounds. He looks okay until you see him next to my nephew who is four weeks younger. He is up in the 90th percentile, over 25 pounds, and you can really see how little my son is.

When you say your daughter won't eat does she spit out the food? Does she gag and vomit? Have you tried giving her crackers or other finger foods that she can pick up and eat on her own? Does she take anything from a bottle, or sippy cup?
How do you do her enzymes when she doesn't eat? Powdered Viokase? That is what we ended up doing. What kind of suppliment is she on? Pediasure, or something more easily digested? My son is on Peptamen.

Sorry for all the questions, it just seems like you daughter is somewhat like my son.
Hope something here helps,
Carey

jacksmom · Oct 15, 2007

Was you daughter born with Meconium Ileus? My son was and we were in the hospital for 4 1/2 months and he ended up having five surgeries, with g-tube placement on the fifth.
He is 13 months old and we are having sever feeding issues. He won't really eat at all. If he gets hungry he will suck on crackers or toast but doesn't actually eat anything. He has such a feeding adversion to a spoon that the when you try to feed him with it he gags and vomits.
His weight isn't even on the growth chart, he is only 18 pounds. He looks okay until you see him next to my nephew who is four weeks younger. He is up in the 90th percentile, over 25 pounds, and you can really see how little my son is.

When you say your daughter won't eat does she spit out the food? Does she gag and vomit? Have you tried giving her crackers or other finger foods that she can pick up and eat on her own? Does she take anything from a bottle, or sippy cup?
How do you do her enzymes when she doesn't eat? Powdered Viokase? That is what we ended up doing. What kind of suppliment is she on? Pediasure, or something more easily digested? My son is on Peptamen.

Sorry for all the questions, it just seems like you daughter is somewhat like my son.
Hope something here helps,
Carey

scheesman · Oct 16, 2007

Hey Carey,
Lily will not eat anything. She gaggs everytime. She realy hates the spoon.We have tried giving her those baby cracker cookie thing. She puts them in her mouth for about two minutes and thats it. We have to give her enzymes in a syringe with her Pregestimil, witch is not any fun.

Yes Lily was born with Mecnium Ileus. When she was in the hospital recovering from her surgeries she slowly started eating breast milk from the bottle. She got up to 30cc and had to go back to surgery. At that time she had an ostomy bag for about 2 months. She had to start all over again after that. Liz tried to breast feed but she only latched on a few times. We think the nurse scared her one time and she wouldn't do anything after that. ( you know the nurses have to teach you everything ). We went home with her on breast milk, but she wasn't gaining any weight. Lily is 11 months today and she wieghs almost 19lbs. We think she is doing pretty good. All the docs are proud of us.

Lily is are only child and it has been a rough year. We just try to hang in there for her sake. These kids don't deserve all of this.

Its nice in some twisted way to know that Lily isn't the only one that went through all that crap. I don't see people talk much about what she has been through. Thank you for your info and you can't ever ask tomany questions.

scheesman · Oct 16, 2007

Hey Carey,
Lily will not eat anything. She gaggs everytime. She realy hates the spoon.We have tried giving her those baby cracker cookie thing. She puts them in her mouth for about two minutes and thats it. We have to give her enzymes in a syringe with her Pregestimil, witch is not any fun.

Yes Lily was born with Mecnium Ileus. When she was in the hospital recovering from her surgeries she slowly started eating breast milk from the bottle. She got up to 30cc and had to go back to surgery. At that time she had an ostomy bag for about 2 months. She had to start all over again after that. Liz tried to breast feed but she only latched on a few times. We think the nurse scared her one time and she wouldn't do anything after that. ( you know the nurses have to teach you everything ). We went home with her on breast milk, but she wasn't gaining any weight. Lily is 11 months today and she wieghs almost 19lbs. We think she is doing pretty good. All the docs are proud of us.

Lily is are only child and it has been a rough year. We just try to hang in there for her sake. These kids don't deserve all of this.

Its nice in some twisted way to know that Lily isn't the only one that went through all that crap. I don't see people talk much about what she has been through. Thank you for your info and you can't ever ask tomany questions.

scheesman · Oct 16, 2007

Hey Carey,
Lily will not eat anything. She gaggs everytime. She realy hates the spoon.We have tried giving her those baby cracker cookie thing. She puts them in her mouth for about two minutes and thats it. We have to give her enzymes in a syringe with her Pregestimil, witch is not any fun.

Yes Lily was born with Mecnium Ileus. When she was in the hospital recovering from her surgeries she slowly started eating breast milk from the bottle. She got up to 30cc and had to go back to surgery. At that time she had an ostomy bag for about 2 months. She had to start all over again after that. Liz tried to breast feed but she only latched on a few times. We think the nurse scared her one time and she wouldn't do anything after that. ( you know the nurses have to teach you everything ). We went home with her on breast milk, but she wasn't gaining any weight. Lily is 11 months today and she wieghs almost 19lbs. We think she is doing pretty good. All the docs are proud of us.

Lily is are only child and it has been a rough year. We just try to hang in there for her sake. These kids don't deserve all of this.

Its nice in some twisted way to know that Lily isn't the only one that went through all that crap. I don't see people talk much about what she has been through. Thank you for your info and you can't ever ask tomany questions.

scheesman · Oct 16, 2007

Hey Carey,
Lily will not eat anything. She gaggs everytime. She realy hates the spoon.We have tried giving her those baby cracker cookie thing. She puts them in her mouth for about two minutes and thats it. We have to give her enzymes in a syringe with her Pregestimil, witch is not any fun.

Yes Lily was born with Mecnium Ileus. When she was in the hospital recovering from her surgeries she slowly started eating breast milk from the bottle. She got up to 30cc and had to go back to surgery. At that time she had an ostomy bag for about 2 months. She had to start all over again after that. Liz tried to breast feed but she only latched on a few times. We think the nurse scared her one time and she wouldn't do anything after that. ( you know the nurses have to teach you everything ). We went home with her on breast milk, but she wasn't gaining any weight. Lily is 11 months today and she wieghs almost 19lbs. We think she is doing pretty good. All the docs are proud of us.

Lily is are only child and it has been a rough year. We just try to hang in there for her sake. These kids don't deserve all of this.

Its nice in some twisted way to know that Lily isn't the only one that went through all that crap. I don't see people talk much about what she has been through. Thank you for your info and you can't ever ask tomany questions.

scheesman · Oct 16, 2007

Hey Carey,
Lily will not eat anything. She gaggs everytime. She realy hates the spoon.We have tried giving her those baby cracker cookie thing. She puts them in her mouth for about two minutes and thats it. We have to give her enzymes in a syringe with her Pregestimil, witch is not any fun.

Yes Lily was born with Mecnium Ileus. When she was in the hospital recovering from her surgeries she slowly started eating breast milk from the bottle. She got up to 30cc and had to go back to surgery. At that time she had an ostomy bag for about 2 months. She had to start all over again after that. Liz tried to breast feed but she only latched on a few times. We think the nurse scared her one time and she wouldn't do anything after that. ( you know the nurses have to teach you everything ). We went home with her on breast milk, but she wasn't gaining any weight. Lily is 11 months today and she wieghs almost 19lbs. We think she is doing pretty good. All the docs are proud of us.

Lily is are only child and it has been a rough year. We just try to hang in there for her sake. These kids don't deserve all of this.

Its nice in some twisted way to know that Lily isn't the only one that went through all that crap. I don't see people talk much about what she has been through. Thank you for your info and you can't ever ask tomany questions.

jacksmom · Oct 16, 2007

I know what you mean about knowing other people have gone through the same thing.
The strang thing is that 17 days after my son was born there was another boy born with Meconium Ileus and was in the NICU at the same time. Of course he had a much easier go of it. HE was born September 27th and out just before Chirstmas. My son was born Septmeber 10th 06 and not out until January 29th 07
My son wans't able to start eating until he was a month old due to two botched surgeries. The third surgery was to disconect his bowel and he to had an ostomy bag for about 6 weeks. Due to him not getting to eat for that first month I was never able to breast feed although I did pump for three months.
By the time we came home he was on Elecare (like pregestimil) until he was a year then switched to Peptamen (like pediasure but way more expensive). My son also suffered from liver disease due to the amount of time he was on TPN but is recovering from that.
I know how frustrated you are. When we first stopped force feeding my son (Jack) he showed more interest in food then we have ever seen, but now only a little over a week later...not a whole lot. He also has sever issues with a spoon. He doesn't like to be spoon fed ANYTHING!
I have been looking for info on the internet and came across a website that I swear at times they were describing my son to a T!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/pediatrics/patients/KCRCFeedingProgram.cfm
">http://www.healthsystem.virgin...CRCFeedingProgram.cfm
</a>Anyway check it out.
Carey

jacksmom · Oct 16, 2007

I know what you mean about knowing other people have gone through the same thing.
The strang thing is that 17 days after my son was born there was another boy born with Meconium Ileus and was in the NICU at the same time. Of course he had a much easier go of it. HE was born September 27th and out just before Chirstmas. My son was born Septmeber 10th 06 and not out until January 29th 07
My son wans't able to start eating until he was a month old due to two botched surgeries. The third surgery was to disconect his bowel and he to had an ostomy bag for about 6 weeks. Due to him not getting to eat for that first month I was never able to breast feed although I did pump for three months.
By the time we came home he was on Elecare (like pregestimil) until he was a year then switched to Peptamen (like pediasure but way more expensive). My son also suffered from liver disease due to the amount of time he was on TPN but is recovering from that.
I know how frustrated you are. When we first stopped force feeding my son (Jack) he showed more interest in food then we have ever seen, but now only a little over a week later...not a whole lot. He also has sever issues with a spoon. He doesn't like to be spoon fed ANYTHING!
I have been looking for info on the internet and came across a website that I swear at times they were describing my son to a T!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/pediatrics/patients/KCRCFeedingProgram.cfm
">http://www.healthsystem.virgin...CRCFeedingProgram.cfm
</a>Anyway check it out.
Carey

jacksmom · Oct 16, 2007

I know what you mean about knowing other people have gone through the same thing.
The strang thing is that 17 days after my son was born there was another boy born with Meconium Ileus and was in the NICU at the same time. Of course he had a much easier go of it. HE was born September 27th and out just before Chirstmas. My son was born Septmeber 10th 06 and not out until January 29th 07
My son wans't able to start eating until he was a month old due to two botched surgeries. The third surgery was to disconect his bowel and he to had an ostomy bag for about 6 weeks. Due to him not getting to eat for that first month I was never able to breast feed although I did pump for three months.
By the time we came home he was on Elecare (like pregestimil) until he was a year then switched to Peptamen (like pediasure but way more expensive). My son also suffered from liver disease due to the amount of time he was on TPN but is recovering from that.
I know how frustrated you are. When we first stopped force feeding my son (Jack) he showed more interest in food then we have ever seen, but now only a little over a week later...not a whole lot. He also has sever issues with a spoon. He doesn't like to be spoon fed ANYTHING!
I have been looking for info on the internet and came across a website that I swear at times they were describing my son to a T!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/pediatrics/patients/KCRCFeedingProgram.cfm
">http://www.healthsystem.virgin...CRCFeedingProgram.cfm
</a>Anyway check it out.
Carey

jacksmom · Oct 16, 2007

I know what you mean about knowing other people have gone through the same thing.
The strang thing is that 17 days after my son was born there was another boy born with Meconium Ileus and was in the NICU at the same time. Of course he had a much easier go of it. HE was born September 27th and out just before Chirstmas. My son was born Septmeber 10th 06 and not out until January 29th 07
My son wans't able to start eating until he was a month old due to two botched surgeries. The third surgery was to disconect his bowel and he to had an ostomy bag for about 6 weeks. Due to him not getting to eat for that first month I was never able to breast feed although I did pump for three months.
By the time we came home he was on Elecare (like pregestimil) until he was a year then switched to Peptamen (like pediasure but way more expensive). My son also suffered from liver disease due to the amount of time he was on TPN but is recovering from that.
I know how frustrated you are. When we first stopped force feeding my son (Jack) he showed more interest in food then we have ever seen, but now only a little over a week later...not a whole lot. He also has sever issues with a spoon. He doesn't like to be spoon fed ANYTHING!
I have been looking for info on the internet and came across a website that I swear at times they were describing my son to a T!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/pediatrics/patients/KCRCFeedingProgram.cfm
">http://www.healthsystem.virgin...CRCFeedingProgram.cfm
</a>Anyway check it out.
Carey

jacksmom · Oct 16, 2007

I know what you mean about knowing other people have gone through the same thing.
The strang thing is that 17 days after my son was born there was another boy born with Meconium Ileus and was in the NICU at the same time. Of course he had a much easier go of it. HE was born September 27th and out just before Chirstmas. My son was born Septmeber 10th 06 and not out until January 29th 07
My son wans't able to start eating until he was a month old due to two botched surgeries. The third surgery was to disconect his bowel and he to had an ostomy bag for about 6 weeks. Due to him not getting to eat for that first month I was never able to breast feed although I did pump for three months.
By the time we came home he was on Elecare (like pregestimil) until he was a year then switched to Peptamen (like pediasure but way more expensive). My son also suffered from liver disease due to the amount of time he was on TPN but is recovering from that.
I know how frustrated you are. When we first stopped force feeding my son (Jack) he showed more interest in food then we have ever seen, but now only a little over a week later...not a whole lot. He also has sever issues with a spoon. He doesn't like to be spoon fed ANYTHING!
I have been looking for info on the internet and came across a website that I swear at times they were describing my son to a T!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthsystem.virginia.edu/internet/pediatrics/patients/KCRCFeedingProgram.cfm
">http://www.healthsystem.virgin...CRCFeedingProgram.cfm
</a>Anyway check it out.
Carey

scheesman · Oct 17, 2007