G Tube and a 2 yr old???

[CDavis]

We're considering using a feeding tube for our 2yr old CFer. I'm nervous and worried that it will make her unhappy. She loves to dance and play and I want her to feel good.
An individual in my community with a CF son (who never had a feeding tube) has told me that 2yr olds and feeding tubes won't mix and that it's a bad idea because it's her body not mine and I shouldn't do this to her.
So, I'm feeling guilty and would love to hear from a parent/CFer/sibling with feeding tube experience.

 

[CDavis]

We're considering using a feeding tube for our 2yr old CFer. I'm nervous and worried that it will make her unhappy. She loves to dance and play and I want her to feel good.
An individual in my community with a CF son (who never had a feeding tube) has told me that 2yr olds and feeding tubes won't mix and that it's a bad idea because it's her body not mine and I shouldn't do this to her.
So, I'm feeling guilty and would love to hear from a parent/CFer/sibling with feeding tube experience.

 

[CDavis]

We're considering using a feeding tube for our 2yr old CFer. I'm nervous and worried that it will make her unhappy. She loves to dance and play and I want her to feel good.
An individual in my community with a CF son (who never had a feeding tube) has told me that 2yr olds and feeding tubes won't mix and that it's a bad idea because it's her body not mine and I shouldn't do this to her.
So, I'm feeling guilty and would love to hear from a parent/CFer/sibling with feeding tube experience.

 

[CDavis]

We're considering using a feeding tube for our 2yr old CFer. I'm nervous and worried that it will make her unhappy. She loves to dance and play and I want her to feel good.
An individual in my community with a CF son (who never had a feeding tube) has told me that 2yr olds and feeding tubes won't mix and that it's a bad idea because it's her body not mine and I shouldn't do this to her.
So, I'm feeling guilty and would love to hear from a parent/CFer/sibling with feeding tube experience.

 

[CDavis]

We're considering using a feeding tube for our 2yr old CFer. I'm nervous and worried that it will make her unhappy. She loves to dance and play and I want her to feel good.
<br />An individual in my community with a CF son (who never had a feeding tube) has told me that 2yr olds and feeding tubes won't mix and that it's a bad idea because it's her body not mine and I shouldn't do this to her.
<br />So, I'm feeling guilty and would love to hear from a parent/CFer/sibling with feeding tube experience.
<br />

 

[sassy81172]

My son is 6 years old, and has had a feeding tube since he was about 5 months old. Since he doesn't really know life without it, our situation is a little different than yours. I can tell you that it has never slowed him down and there is nothing that he has been unable to do because of it. It is very nice to be able to give him extra calories/nourishment when he is having trouble eating enough, which is quite often. His favorite foods are always low in calories, so it's nice to be able to supplement using the tube.

I would say that you need to do what you feel is best, and not worry about what this other individual has said. It bothers me that someone whose child has not had a tube is telling you that it won't work. I'm so glad that you are looking for other opinions of those who are/have been there! I wish you the best and I know that you will make the best decision for your child!

 

[sassy81172]

My son is 6 years old, and has had a feeding tube since he was about 5 months old. Since he doesn't really know life without it, our situation is a little different than yours. I can tell you that it has never slowed him down and there is nothing that he has been unable to do because of it. It is very nice to be able to give him extra calories/nourishment when he is having trouble eating enough, which is quite often. His favorite foods are always low in calories, so it's nice to be able to supplement using the tube.

I would say that you need to do what you feel is best, and not worry about what this other individual has said. It bothers me that someone whose child has not had a tube is telling you that it won't work. I'm so glad that you are looking for other opinions of those who are/have been there! I wish you the best and I know that you will make the best decision for your child!

 

[sassy81172]

My son is 6 years old, and has had a feeding tube since he was about 5 months old. Since he doesn't really know life without it, our situation is a little different than yours. I can tell you that it has never slowed him down and there is nothing that he has been unable to do because of it. It is very nice to be able to give him extra calories/nourishment when he is having trouble eating enough, which is quite often. His favorite foods are always low in calories, so it's nice to be able to supplement using the tube.

I would say that you need to do what you feel is best, and not worry about what this other individual has said. It bothers me that someone whose child has not had a tube is telling you that it won't work. I'm so glad that you are looking for other opinions of those who are/have been there! I wish you the best and I know that you will make the best decision for your child!

 

[sassy81172]

My son is 6 years old, and has had a feeding tube since he was about 5 months old. Since he doesn't really know life without it, our situation is a little different than yours. I can tell you that it has never slowed him down and there is nothing that he has been unable to do because of it. It is very nice to be able to give him extra calories/nourishment when he is having trouble eating enough, which is quite often. His favorite foods are always low in calories, so it's nice to be able to supplement using the tube.

I would say that you need to do what you feel is best, and not worry about what this other individual has said. It bothers me that someone whose child has not had a tube is telling you that it won't work. I'm so glad that you are looking for other opinions of those who are/have been there! I wish you the best and I know that you will make the best decision for your child!

 

[sassy81172]

My son is 6 years old, and has had a feeding tube since he was about 5 months old. Since he doesn't really know life without it, our situation is a little different than yours. I can tell you that it has never slowed him down and there is nothing that he has been unable to do because of it. It is very nice to be able to give him extra calories/nourishment when he is having trouble eating enough, which is quite often. His favorite foods are always low in calories, so it's nice to be able to supplement using the tube.
<br />
<br />I would say that you need to do what you feel is best, and not worry about what this other individual has said. It bothers me that someone whose child has not had a tube is telling you that it won't work. I'm so glad that you are looking for other opinions of those who are/have been there! I wish you the best and I know that you will make the best decision for your child!

 

[Mommafirst]

My daughter is going to turn 4 next month. Last year, when she was 2 and half, we came to the end of our ropes with fighting the tube -- everything we had done to help her gain weight had failed and she was becoming malnourished, falling off the growth charts, and the CF team was worried for her long term survival. I was an emotional wreck straight into the day of the surgery and for several months after. I did not want to do THAT to my sweet, energetic, beautiful daughter who had already dealt with so much. I didn't want to make her more different than she already was. But eventually, I had to trust our CF team and their knowledge.

My daughter's adjustment was a cinch. Seriously. Within a month she couldn't remember a time when she didn't have it. It doesn't interfere in her life now at all. She swims three times a week at preschool, changes in front of the other kids who don't even seem to notice the button, we swim at the lake in the summer. She still dances and sings and does all kinds of normal kid stuff all the time.

The biggest difference is that she went from being under the 2nd percentage BMI at the day of surgery (23 pounds) to the 65% BMI today (32 pounds). She gained 10 pounds in one year, and without the tube we were lucky if we could see a 2 pound gain each year. She is doing great.

I'm sorry someone is making you question your choices as a CF parent. Please continue to educate yourself and surround yourself with a CF team that you can trust (and question) and use those trusted people to build your decisions, not a well meaning person who may not know what they are talking about.

I HATE my daughter's feeding tube. Its a pain at times, its not a fun thing to know your kid has, I wish she didn't need it. But I love what its done for her health and for her future. And we are now working on weaning her from the tube so that she might get to go to kindergarten without it. If the wean works and she can go on to gain weight on her own, I will be so thrilled that we did this now instead of waiting until she is a teen with lots of body issues, and potentially worse lung functioning.

I hope this helps. Feel free to PM me if you want any information about the surgery, recovery or any thing else.

 

[Mommafirst]

My daughter is going to turn 4 next month. Last year, when she was 2 and half, we came to the end of our ropes with fighting the tube -- everything we had done to help her gain weight had failed and she was becoming malnourished, falling off the growth charts, and the CF team was worried for her long term survival. I was an emotional wreck straight into the day of the surgery and for several months after. I did not want to do THAT to my sweet, energetic, beautiful daughter who had already dealt with so much. I didn't want to make her more different than she already was. But eventually, I had to trust our CF team and their knowledge.

My daughter's adjustment was a cinch. Seriously. Within a month she couldn't remember a time when she didn't have it. It doesn't interfere in her life now at all. She swims three times a week at preschool, changes in front of the other kids who don't even seem to notice the button, we swim at the lake in the summer. She still dances and sings and does all kinds of normal kid stuff all the time.

The biggest difference is that she went from being under the 2nd percentage BMI at the day of surgery (23 pounds) to the 65% BMI today (32 pounds). She gained 10 pounds in one year, and without the tube we were lucky if we could see a 2 pound gain each year. She is doing great.

I'm sorry someone is making you question your choices as a CF parent. Please continue to educate yourself and surround yourself with a CF team that you can trust (and question) and use those trusted people to build your decisions, not a well meaning person who may not know what they are talking about.

I HATE my daughter's feeding tube. Its a pain at times, its not a fun thing to know your kid has, I wish she didn't need it. But I love what its done for her health and for her future. And we are now working on weaning her from the tube so that she might get to go to kindergarten without it. If the wean works and she can go on to gain weight on her own, I will be so thrilled that we did this now instead of waiting until she is a teen with lots of body issues, and potentially worse lung functioning.

I hope this helps. Feel free to PM me if you want any information about the surgery, recovery or any thing else.

 

[Mommafirst]

My daughter is going to turn 4 next month. Last year, when she was 2 and half, we came to the end of our ropes with fighting the tube -- everything we had done to help her gain weight had failed and she was becoming malnourished, falling off the growth charts, and the CF team was worried for her long term survival. I was an emotional wreck straight into the day of the surgery and for several months after. I did not want to do THAT to my sweet, energetic, beautiful daughter who had already dealt with so much. I didn't want to make her more different than she already was. But eventually, I had to trust our CF team and their knowledge.

My daughter's adjustment was a cinch. Seriously. Within a month she couldn't remember a time when she didn't have it. It doesn't interfere in her life now at all. She swims three times a week at preschool, changes in front of the other kids who don't even seem to notice the button, we swim at the lake in the summer. She still dances and sings and does all kinds of normal kid stuff all the time.

The biggest difference is that she went from being under the 2nd percentage BMI at the day of surgery (23 pounds) to the 65% BMI today (32 pounds). She gained 10 pounds in one year, and without the tube we were lucky if we could see a 2 pound gain each year. She is doing great.

I'm sorry someone is making you question your choices as a CF parent. Please continue to educate yourself and surround yourself with a CF team that you can trust (and question) and use those trusted people to build your decisions, not a well meaning person who may not know what they are talking about.

I HATE my daughter's feeding tube. Its a pain at times, its not a fun thing to know your kid has, I wish she didn't need it. But I love what its done for her health and for her future. And we are now working on weaning her from the tube so that she might get to go to kindergarten without it. If the wean works and she can go on to gain weight on her own, I will be so thrilled that we did this now instead of waiting until she is a teen with lots of body issues, and potentially worse lung functioning.

I hope this helps. Feel free to PM me if you want any information about the surgery, recovery or any thing else.

 

[Mommafirst]

My daughter is going to turn 4 next month. Last year, when she was 2 and half, we came to the end of our ropes with fighting the tube -- everything we had done to help her gain weight had failed and she was becoming malnourished, falling off the growth charts, and the CF team was worried for her long term survival. I was an emotional wreck straight into the day of the surgery and for several months after. I did not want to do THAT to my sweet, energetic, beautiful daughter who had already dealt with so much. I didn't want to make her more different than she already was. But eventually, I had to trust our CF team and their knowledge.

My daughter's adjustment was a cinch. Seriously. Within a month she couldn't remember a time when she didn't have it. It doesn't interfere in her life now at all. She swims three times a week at preschool, changes in front of the other kids who don't even seem to notice the button, we swim at the lake in the summer. She still dances and sings and does all kinds of normal kid stuff all the time.

The biggest difference is that she went from being under the 2nd percentage BMI at the day of surgery (23 pounds) to the 65% BMI today (32 pounds). She gained 10 pounds in one year, and without the tube we were lucky if we could see a 2 pound gain each year. She is doing great.

I'm sorry someone is making you question your choices as a CF parent. Please continue to educate yourself and surround yourself with a CF team that you can trust (and question) and use those trusted people to build your decisions, not a well meaning person who may not know what they are talking about.

I HATE my daughter's feeding tube. Its a pain at times, its not a fun thing to know your kid has, I wish she didn't need it. But I love what its done for her health and for her future. And we are now working on weaning her from the tube so that she might get to go to kindergarten without it. If the wean works and she can go on to gain weight on her own, I will be so thrilled that we did this now instead of waiting until she is a teen with lots of body issues, and potentially worse lung functioning.

I hope this helps. Feel free to PM me if you want any information about the surgery, recovery or any thing else.

 

[Mommafirst]

My daughter is going to turn 4 next month. Last year, when she was 2 and half, we came to the end of our ropes with fighting the tube -- everything we had done to help her gain weight had failed and she was becoming malnourished, falling off the growth charts, and the CF team was worried for her long term survival. I was an emotional wreck straight into the day of the surgery and for several months after. I did not want to do THAT to my sweet, energetic, beautiful daughter who had already dealt with so much. I didn't want to make her more different than she already was. But eventually, I had to trust our CF team and their knowledge.
<br />
<br />My daughter's adjustment was a cinch. Seriously. Within a month she couldn't remember a time when she didn't have it. It doesn't interfere in her life now at all. She swims three times a week at preschool, changes in front of the other kids who don't even seem to notice the button, we swim at the lake in the summer. She still dances and sings and does all kinds of normal kid stuff all the time.
<br />
<br />The biggest difference is that she went from being under the 2nd percentage BMI at the day of surgery (23 pounds) to the 65% BMI today (32 pounds). She gained 10 pounds in one year, and without the tube we were lucky if we could see a 2 pound gain each year. She is doing great.
<br />
<br />I'm sorry someone is making you question your choices as a CF parent. Please continue to educate yourself and surround yourself with a CF team that you can trust (and question) and use those trusted people to build your decisions, not a well meaning person who may not know what they are talking about.
<br />
<br />I HATE my daughter's feeding tube. Its a pain at times, its not a fun thing to know your kid has, I wish she didn't need it. But I love what its done for her health and for her future. And we are now working on weaning her from the tube so that she might get to go to kindergarten without it. If the wean works and she can go on to gain weight on her own, I will be so thrilled that we did this now instead of waiting until she is a teen with lots of body issues, and potentially worse lung functioning.
<br />
<br />I hope this helps. Feel free to PM me if you want any information about the surgery, recovery or any thing else.

 

[crickit715]

my daughter is 2 and her feeding tube doesnt get in the way. she has had it since 4 months of age and i wouldnt change a thing!! it has been a blessing, she went from constant below 5th percentile to constant 95th percentile concerning her weight. her doctors couldnt be happier with her nutrition. the tube makes it easier to give liquid meds and when she is sick we dont run the risk of her becoming dehydrated and being hospitalized...we can "force feed" or bolus her pedialyte and other fluids. she is only hooked up at night. the first 6 weeks is definatley the hardest. that is the time until you get the mickey button. but if you can get thru the first 2 months, i think it is definatley worth it in the long run! i have had my share of issues with it but for us the pros definatley out weigh the cons.

 

[crickit715]

my daughter is 2 and her feeding tube doesnt get in the way. she has had it since 4 months of age and i wouldnt change a thing!! it has been a blessing, she went from constant below 5th percentile to constant 95th percentile concerning her weight. her doctors couldnt be happier with her nutrition. the tube makes it easier to give liquid meds and when she is sick we dont run the risk of her becoming dehydrated and being hospitalized...we can "force feed" or bolus her pedialyte and other fluids. she is only hooked up at night. the first 6 weeks is definatley the hardest. that is the time until you get the mickey button. but if you can get thru the first 2 months, i think it is definatley worth it in the long run! i have had my share of issues with it but for us the pros definatley out weigh the cons.

 

[crickit715]

my daughter is 2 and her feeding tube doesnt get in the way. she has had it since 4 months of age and i wouldnt change a thing!! it has been a blessing, she went from constant below 5th percentile to constant 95th percentile concerning her weight. her doctors couldnt be happier with her nutrition. the tube makes it easier to give liquid meds and when she is sick we dont run the risk of her becoming dehydrated and being hospitalized...we can "force feed" or bolus her pedialyte and other fluids. she is only hooked up at night. the first 6 weeks is definatley the hardest. that is the time until you get the mickey button. but if you can get thru the first 2 months, i think it is definatley worth it in the long run! i have had my share of issues with it but for us the pros definatley out weigh the cons.

 

[crickit715]

my daughter is 2 and her feeding tube doesnt get in the way. she has had it since 4 months of age and i wouldnt change a thing!! it has been a blessing, she went from constant below 5th percentile to constant 95th percentile concerning her weight. her doctors couldnt be happier with her nutrition. the tube makes it easier to give liquid meds and when she is sick we dont run the risk of her becoming dehydrated and being hospitalized...we can "force feed" or bolus her pedialyte and other fluids. she is only hooked up at night. the first 6 weeks is definatley the hardest. that is the time until you get the mickey button. but if you can get thru the first 2 months, i think it is definatley worth it in the long run! i have had my share of issues with it but for us the pros definatley out weigh the cons.

 

[crickit715]

my daughter is 2 and her feeding tube doesnt get in the way. she has had it since 4 months of age and i wouldnt change a thing!! it has been a blessing, she went from constant below 5th percentile to constant 95th percentile concerning her weight. her doctors couldnt be happier with her nutrition. the tube makes it easier to give liquid meds and when she is sick we dont run the risk of her becoming dehydrated and being hospitalized...we can "force feed" or bolus her pedialyte and other fluids. she is only hooked up at night. the first 6 weeks is definatley the hardest. that is the time until you get the mickey button. but if you can get thru the first 2 months, i think it is definatley worth it in the long run! i have had my share of issues with it but for us the pros definatley out weigh the cons.