G-tube

[shazie81]

So my husband and I have decided on the G-tube for our oldest that is 2 and half. I'm so scared about this and yet at the same time relieved if that is even possible.
I know that we have made the right decision but I still feel like a failure.
So I guess I'm just looking for some other parents that have decided to get the G-tube for their child and how you felt and what your thoughts are.

 

[shazie81]

So my husband and I have decided on the G-tube for our oldest that is 2 and half. I'm so scared about this and yet at the same time relieved if that is even possible.
I know that we have made the right decision but I still feel like a failure.
So I guess I'm just looking for some other parents that have decided to get the G-tube for their child and how you felt and what your thoughts are.

 

[shazie81]

So my husband and I have decided on the G-tube for our oldest that is 2 and half. I'm so scared about this and yet at the same time relieved if that is even possible.
<br />I know that we have made the right decision but I still feel like a failure.
<br />So I guess I'm just looking for some other parents that have decided to get the G-tube for their child and how you felt and what your thoughts are.

 

[hmw]

My daughter had a g-tube (MicKey button, in her case) placed about 6mo ago.

In short- it was one of the best decisions we've ever made for her and I wish we did it sooner.

In 'long'- it was one of the most difficult decisions we've ever made for her and only came after a very long process of trying everything under the sun to help her grow... it was very hard to make the choice to do something invasive to her body. I understand your feelings completely because I felt the same way, but you are NOT a failure. This is something that becomes necessary for many children for CF, who just cannot get enough nutrition to thrive and grow no matter how vigilant we are with the calories, with the supplements, with the never-ending focus on FOOD.

In the time since she's gotten the tube she has experienced substantial weight gain and has started growing in height as well. Prior to getting it, she was considered to be in growth failure- she'd only grown something like 1/4" in over a year and even though she was gaining weight on enzymes (which improved upon adding Prevacid) she couldn't get over the 3-5th% on the charts due to what she'd lose with illness. Now, when she is sick, we can do daytime bolus feeds to help increase calories and therefore minimize weight loss, and her nighttime supplements are of a special formula that is more easily digested than regular food or typical high-calorie supplements. She's gone from struggling to maintain the 5th% in weight and off the charts for height to about the 18th% in weight and just over the 5th% in height in less than 6mo... her drs and I all have high hopes for her continued progress!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is such a relief to not have to constantly be worried about the next meal, the calorie intake. It was so exhausting and frustrating. Emily has always been a great eater and I didn't want to lose that, to give her an unhealthy attitude about eating and associate it with pressure and stress.

I wish the very best and I will try to answer any other questions you have if I can! There are many other parents here as well who have kids w/tubes, many who've had them much longer than Emily.

 

[hmw]

My daughter had a g-tube (MicKey button, in her case) placed about 6mo ago.

In short- it was one of the best decisions we've ever made for her and I wish we did it sooner.

In 'long'- it was one of the most difficult decisions we've ever made for her and only came after a very long process of trying everything under the sun to help her grow... it was very hard to make the choice to do something invasive to her body. I understand your feelings completely because I felt the same way, but you are NOT a failure. This is something that becomes necessary for many children for CF, who just cannot get enough nutrition to thrive and grow no matter how vigilant we are with the calories, with the supplements, with the never-ending focus on FOOD.

In the time since she's gotten the tube she has experienced substantial weight gain and has started growing in height as well. Prior to getting it, she was considered to be in growth failure- she'd only grown something like 1/4" in over a year and even though she was gaining weight on enzymes (which improved upon adding Prevacid) she couldn't get over the 3-5th% on the charts due to what she'd lose with illness. Now, when she is sick, we can do daytime bolus feeds to help increase calories and therefore minimize weight loss, and her nighttime supplements are of a special formula that is more easily digested than regular food or typical high-calorie supplements. She's gone from struggling to maintain the 5th% in weight and off the charts for height to about the 18th% in weight and just over the 5th% in height in less than 6mo... her drs and I all have high hopes for her continued progress!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is such a relief to not have to constantly be worried about the next meal, the calorie intake. It was so exhausting and frustrating. Emily has always been a great eater and I didn't want to lose that, to give her an unhealthy attitude about eating and associate it with pressure and stress.

I wish the very best and I will try to answer any other questions you have if I can! There are many other parents here as well who have kids w/tubes, many who've had them much longer than Emily.

 

[hmw]

My daughter had a g-tube (MicKey button, in her case) placed about 6mo ago.
<br />
<br />In short- it was one of the best decisions we've ever made for her and I wish we did it sooner.
<br />
<br />In 'long'- it was one of the most difficult decisions we've ever made for her and only came after a very long process of trying everything under the sun to help her grow... it was very hard to make the choice to do something invasive to her body. I understand your feelings completely because I felt the same way, but you are NOT a failure. This is something that becomes necessary for many children for CF, who just cannot get enough nutrition to thrive and grow no matter how vigilant we are with the calories, with the supplements, with the never-ending focus on FOOD.
<br />
<br />In the time since she's gotten the tube she has experienced substantial weight gain and has started growing in height as well. Prior to getting it, she was considered to be in growth failure- she'd only grown something like 1/4" in over a year and even though she was gaining weight on enzymes (which improved upon adding Prevacid) she couldn't get over the 3-5th% on the charts due to what she'd lose with illness. Now, when she is sick, we can do daytime bolus feeds to help increase calories and therefore minimize weight loss, and her nighttime supplements are of a special formula that is more easily digested than regular food or typical high-calorie supplements. She's gone from struggling to maintain the 5th% in weight and off the charts for height to about the 18th% in weight and just over the 5th% in height in less than 6mo... her drs and I all have high hopes for her continued progress!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It is such a relief to not have to constantly be worried about the next meal, the calorie intake. It was so exhausting and frustrating. Emily has always been a great eater and I didn't want to lose that, to give her an unhealthy attitude about eating and associate it with pressure and stress.
<br />
<br />I wish the very best and I will try to answer any other questions you have if I can! There are many other parents here as well who have kids w/tubes, many who've had them much longer than Emily.

 

[Jane]

Ditto! Both my boys have had g-tubes for 5 years. Our decision was complicated only by the fact that they were teenagers and already self-conscious. Having the g-tubes has been a literal lifesaver though. It's not an easy decision for families. Good luck.

 

[Jane]

Ditto! Both my boys have had g-tubes for 5 years. Our decision was complicated only by the fact that they were teenagers and already self-conscious. Having the g-tubes has been a literal lifesaver though. It's not an easy decision for families. Good luck.

 

[Jane]

Ditto! Both my boys have had g-tubes for 5 years. Our decision was complicated only by the fact that they were teenagers and already self-conscious. Having the g-tubes has been a literal lifesaver though. It's not an easy decision for families. Good luck.

 

[Mommafirst]

Cf makes us parents make IMPOSSIBLE decisions!! We struggled for over a year with this decision and when Alyssa was 2.5 years I handed her over, tears streaming, to the surgeon to have the tube placed. For the first month, I really regretted it -- the recovery was ok, but it took some time to get everything like her reflux increases and constipation from the pain meds under control. That was such a hard time, I have tears just thinking about it. BUT...it still was the best decision we could have made for Alyssa. She has grown and gained so well in the last two years. We are very close to weaning completely. With the pressure off for eating high cals meals, she has learned to LOVE food, she eats really well and meal times are no longer stressful. We hope to have the tube removed by the time she goes to kindergarten, but if we don't get there, its okay. It will be okay. It sucks, but it will be okay.

Hang in there. You are making a smart choice. You will see that some point in the near future.

 

[Mommafirst]

Cf makes us parents make IMPOSSIBLE decisions!! We struggled for over a year with this decision and when Alyssa was 2.5 years I handed her over, tears streaming, to the surgeon to have the tube placed. For the first month, I really regretted it -- the recovery was ok, but it took some time to get everything like her reflux increases and constipation from the pain meds under control. That was such a hard time, I have tears just thinking about it. BUT...it still was the best decision we could have made for Alyssa. She has grown and gained so well in the last two years. We are very close to weaning completely. With the pressure off for eating high cals meals, she has learned to LOVE food, she eats really well and meal times are no longer stressful. We hope to have the tube removed by the time she goes to kindergarten, but if we don't get there, its okay. It will be okay. It sucks, but it will be okay.

Hang in there. You are making a smart choice. You will see that some point in the near future.

 

[Mommafirst]

Cf makes us parents make IMPOSSIBLE decisions!! We struggled for over a year with this decision and when Alyssa was 2.5 years I handed her over, tears streaming, to the surgeon to have the tube placed. For the first month, I really regretted it -- the recovery was ok, but it took some time to get everything like her reflux increases and constipation from the pain meds under control. That was such a hard time, I have tears just thinking about it. BUT...it still was the best decision we could have made for Alyssa. She has grown and gained so well in the last two years. We are very close to weaning completely. With the pressure off for eating high cals meals, she has learned to LOVE food, she eats really well and meal times are no longer stressful. We hope to have the tube removed by the time she goes to kindergarten, but if we don't get there, its okay. It will be okay. It sucks, but it will be okay.
<br />
<br />Hang in there. You are making a smart choice. You will see that some point in the near future.

 

[grammakaky]

My daughter just went through this with my granddaughter this past fall. She is 2.5 and just wasnt gaining weight. She was starting to get sick more often also. They also found she had reflex going on. They did the surgery in Sept for both and she is doing very well. It was a hard decision for my daughter; but now she is relieved that our granddaughter is doing very well. She still doesn't have a great appetite; but we are hoping she builds it up in time and also eventually have the gtube reversed. Have a wonderful holiday and enjoy everyday.

 

[grammakaky]

My daughter just went through this with my granddaughter this past fall. She is 2.5 and just wasnt gaining weight. She was starting to get sick more often also. They also found she had reflex going on. They did the surgery in Sept for both and she is doing very well. It was a hard decision for my daughter; but now she is relieved that our granddaughter is doing very well. She still doesn't have a great appetite; but we are hoping she builds it up in time and also eventually have the gtube reversed. Have a wonderful holiday and enjoy everyday.

 

[grammakaky]

My daughter just went through this with my granddaughter this past fall. She is 2.5 and just wasnt gaining weight. She was starting to get sick more often also. They also found she had reflex going on. They did the surgery in Sept for both and she is doing very well. It was a hard decision for my daughter; but now she is relieved that our granddaughter is doing very well. She still doesn't have a great appetite; but we are hoping she builds it up in time and also eventually have the gtube reversed. Have a wonderful holiday and enjoy everyday.

 

[MaeFlower]

My daughter has a mic-key button and receives nothing but pump feeds. At 2 months she was dx as FTT-failure to thrive. My husband and I made the difficult decision to have a Nissen Fundoplication for her(surgery to help correct GERD) b/c she was so small they recommended placing a g-tube as well. She is now gaining weight and doing VERY well.

You may have some anxiety and feel overwhelmed when they start teaching you how to give her feeds; practice, practice, practice. While in the hospital, we told the nursing staff to "throw us to the wolves." We felt the only way to learn was to go for it head on. We were scared, but now I think we can hook her up and set her pump with our eyes closed and hands behind our back. You too will get this confident.

You ARE making the right decision, and I too know the "feeling like a failure." But when you see her gain and grow and get stronger, you will smile knowing you ultimately made the right decision for her. It is a lot to learn and get used to, but you have the strength and courage to tackle this challenge head on.

Keep your head up and many blessings.

 

[MaeFlower]

My daughter has a mic-key button and receives nothing but pump feeds. At 2 months she was dx as FTT-failure to thrive. My husband and I made the difficult decision to have a Nissen Fundoplication for her(surgery to help correct GERD) b/c she was so small they recommended placing a g-tube as well. She is now gaining weight and doing VERY well.

You may have some anxiety and feel overwhelmed when they start teaching you how to give her feeds; practice, practice, practice. While in the hospital, we told the nursing staff to "throw us to the wolves." We felt the only way to learn was to go for it head on. We were scared, but now I think we can hook her up and set her pump with our eyes closed and hands behind our back. You too will get this confident.

You ARE making the right decision, and I too know the "feeling like a failure." But when you see her gain and grow and get stronger, you will smile knowing you ultimately made the right decision for her. It is a lot to learn and get used to, but you have the strength and courage to tackle this challenge head on.

Keep your head up and many blessings.

 

[MaeFlower]

My daughter has a mic-key button and receives nothing but pump feeds. At 2 months she was dx as FTT-failure to thrive. My husband and I made the difficult decision to have a Nissen Fundoplication for her(surgery to help correct GERD) b/c she was so small they recommended placing a g-tube as well. She is now gaining weight and doing VERY well.
<br />
<br />You may have some anxiety and feel overwhelmed when they start teaching you how to give her feeds; practice, practice, practice. While in the hospital, we told the nursing staff to "throw us to the wolves." We felt the only way to learn was to go for it head on. We were scared, but now I think we can hook her up and set her pump with our eyes closed and hands behind our back. You too will get this confident.
<br />
<br />You ARE making the right decision, and I too know the "feeling like a failure." But when you see her gain and grow and get stronger, you will smile knowing you ultimately made the right decision for her. It is a lot to learn and get used to, but you have the strength and courage to tackle this challenge head on.
<br />
<br />Keep your head up and many blessings.

 

[shazie81]

Thank you all!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so appreciate your thoughts and kind words

 

[shazie81]

Thank you all!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so appreciate your thoughts and kind words