some much needed advice!!

[Mommafirst]

The weight gain stuff with Cf can be absolutely maddening. I've been dealing with it for my daughter since she was about 9 months old. We went thorugh feeding therapy, tons of high calorie foods and finally a year ago, just before her third birthday, my husband and I agreed finally to give in on the feeding tube. No, the tube is not a fun choice but it has alleviated so much stress and frustration for us. It just didn't seem to matter how many calories we added. We did pediasure, we did duocal, we added heavy cream to soups, butter, cheese.... nothing worked because she just couldn't (wouldn't) take in enough volume to meet the demands that CF was putting on her.

In the past year, my daughter has moved from off the chart small to the 70th percentage BMI!!!!! We are now trying to wean her and teach her to orally take in those calories. The goal is to be done with tube by kindergarten.

I know its frustrating, and I know that you have to come to the solutions yourself in your own time. The decision for the tube was a very difficult and sad one for us, but it has been such a help for her I can't regret doing it.

 

[Mommafirst]

The weight gain stuff with Cf can be absolutely maddening. I've been dealing with it for my daughter since she was about 9 months old. We went thorugh feeding therapy, tons of high calorie foods and finally a year ago, just before her third birthday, my husband and I agreed finally to give in on the feeding tube. No, the tube is not a fun choice but it has alleviated so much stress and frustration for us. It just didn't seem to matter how many calories we added. We did pediasure, we did duocal, we added heavy cream to soups, butter, cheese.... nothing worked because she just couldn't (wouldn't) take in enough volume to meet the demands that CF was putting on her.

In the past year, my daughter has moved from off the chart small to the 70th percentage BMI!!!!! We are now trying to wean her and teach her to orally take in those calories. The goal is to be done with tube by kindergarten.

I know its frustrating, and I know that you have to come to the solutions yourself in your own time. The decision for the tube was a very difficult and sad one for us, but it has been such a help for her I can't regret doing it.

 

[Mommafirst]

The weight gain stuff with Cf can be absolutely maddening. I've been dealing with it for my daughter since she was about 9 months old. We went thorugh feeding therapy, tons of high calorie foods and finally a year ago, just before her third birthday, my husband and I agreed finally to give in on the feeding tube. No, the tube is not a fun choice but it has alleviated so much stress and frustration for us. It just didn't seem to matter how many calories we added. We did pediasure, we did duocal, we added heavy cream to soups, butter, cheese.... nothing worked because she just couldn't (wouldn't) take in enough volume to meet the demands that CF was putting on her.

In the past year, my daughter has moved from off the chart small to the 70th percentage BMI!!!!! We are now trying to wean her and teach her to orally take in those calories. The goal is to be done with tube by kindergarten.

I know its frustrating, and I know that you have to come to the solutions yourself in your own time. The decision for the tube was a very difficult and sad one for us, but it has been such a help for her I can't regret doing it.

 

[Mommafirst]

The weight gain stuff with Cf can be absolutely maddening. I've been dealing with it for my daughter since she was about 9 months old. We went thorugh feeding therapy, tons of high calorie foods and finally a year ago, just before her third birthday, my husband and I agreed finally to give in on the feeding tube. No, the tube is not a fun choice but it has alleviated so much stress and frustration for us. It just didn't seem to matter how many calories we added. We did pediasure, we did duocal, we added heavy cream to soups, butter, cheese.... nothing worked because she just couldn't (wouldn't) take in enough volume to meet the demands that CF was putting on her.

In the past year, my daughter has moved from off the chart small to the 70th percentage BMI!!!!! We are now trying to wean her and teach her to orally take in those calories. The goal is to be done with tube by kindergarten.

I know its frustrating, and I know that you have to come to the solutions yourself in your own time. The decision for the tube was a very difficult and sad one for us, but it has been such a help for her I can't regret doing it.

 

[Mommafirst]

The weight gain stuff with Cf can be absolutely maddening. I've been dealing with it for my daughter since she was about 9 months old. We went thorugh feeding therapy, tons of high calorie foods and finally a year ago, just before her third birthday, my husband and I agreed finally to give in on the feeding tube. No, the tube is not a fun choice but it has alleviated so much stress and frustration for us. It just didn't seem to matter how many calories we added. We did pediasure, we did duocal, we added heavy cream to soups, butter, cheese.... nothing worked because she just couldn't (wouldn't) take in enough volume to meet the demands that CF was putting on her.
<br />
<br />In the past year, my daughter has moved from off the chart small to the 70th percentage BMI!!!!! We are now trying to wean her and teach her to orally take in those calories. The goal is to be done with tube by kindergarten.
<br />
<br />I know its frustrating, and I know that you have to come to the solutions yourself in your own time. The decision for the tube was a very difficult and sad one for us, but it has been such a help for her I can't regret doing it.

 

[Nancy08]

Some inspirational quotes for you

"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."

"In the middle of every difficulty lies opportunity."

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them."



___________________
<a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">inspirational quotes</a> || <a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">motivational quotes</a>

 

[Nancy08]

Some inspirational quotes for you

"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."

"In the middle of every difficulty lies opportunity."

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them."



___________________
<a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">inspirational quotes</a> || <a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">motivational quotes</a>

 

[Nancy08]

Some inspirational quotes for you

"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."

"In the middle of every difficulty lies opportunity."

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them."



___________________
<a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">inspirational quotes</a> || <a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">motivational quotes</a>

 

[Nancy08]

Some inspirational quotes for you

"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."

"In the middle of every difficulty lies opportunity."

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them."



___________________
<a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">inspirational quotes</a> || <a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">motivational quotes</a>

 

[Nancy08]

Some inspirational quotes for you
<br />
<br />"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."
<br />
<br />"In the middle of every difficulty lies opportunity."
<br />
<br />"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them."
<br />
<br />
<br />
<br />___________________
<br /><a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">inspirational quotes</a> || <a target=_blank class=ftalternatingbarlinklarge href="https://http://www.selfgrowth.com/quote.html">motivational quotes</a>

 

[butkool01]

thanks for all the advice guys, its really tough but im sure you all already know, my daughter seems to have caught both ends of it really bad, she cant poop, breath, gain, well she can she just has a hard time it seems with everything. but i thank you all very much and would still love to hear more about this g-tube before jumping to any descions. also is there any military families on here?

thanks all!

 

[butkool01]

thanks for all the advice guys, its really tough but im sure you all already know, my daughter seems to have caught both ends of it really bad, she cant poop, breath, gain, well she can she just has a hard time it seems with everything. but i thank you all very much and would still love to hear more about this g-tube before jumping to any descions. also is there any military families on here?

thanks all!

 

[butkool01]

thanks for all the advice guys, its really tough but im sure you all already know, my daughter seems to have caught both ends of it really bad, she cant poop, breath, gain, well she can she just has a hard time it seems with everything. but i thank you all very much and would still love to hear more about this g-tube before jumping to any descions. also is there any military families on here?

thanks all!

 

[butkool01]

thanks for all the advice guys, its really tough but im sure you all already know, my daughter seems to have caught both ends of it really bad, she cant poop, breath, gain, well she can she just has a hard time it seems with everything. but i thank you all very much and would still love to hear more about this g-tube before jumping to any descions. also is there any military families on here?

thanks all!

 

[butkool01]

thanks for all the advice guys, its really tough but im sure you all already know, my daughter seems to have caught both ends of it really bad, she cant poop, breath, gain, well she can she just has a hard time it seems with everything. but i thank you all very much and would still love to hear more about this g-tube before jumping to any descions. also is there any military families on here?
<br />
<br />thanks all!

 

[babyluke]

I just wanted to encourage you that if you end up going the g tube route, it is really not that bad. Luke had his done when he was 8 months old and it was a horrible decision. I felt like such a failure. But we had tried everything. You can try every calorie adding trick in the book, but if they won't eat it it does no good and at the end of the day there is only one way to "force" them to eat and that is the feeding tube.
There are other threads going right now about feeding tubes, but they may be older so just to share our experience with it: Luke was 8 months old and only about 13 lbs. and probably 23 inches long, so he was horribly skinny and drastically off the curve. In fact, he wasn't even tracking upward on his own "curve" so we knew we had no choice. The surgery was not that bad. He was a little lethargic the first day, but back to normal by day two and home about 3 days after the surgery. The long tube they have at first is a little bit scarier--it just looks worse(in my opinion)and we had to make sure it stayed tucked up near his body so he did not pull it or crawl on it. The feeding pumps (assuming you will do overnight feeds) are really easy to use--you fill the bag, feed the line thru a couple places, prime it and push some buttons to set the rate and off you go. It takes us a couple of minutes each night at this point. A couple months after the surgery they can get a mickey button. They are easy to take care of, easy to replace and barely noticeable under their clothes. We have gone on vacation to the beach and to Disney with Luke's pump. He goes swimming and all of the things that other two year old's do.
Luke is two now, he is 26 lbs. and 33 inches tall. He is at the 57th percentile for his BMI. The feeling I had when we first got that green sticker (that is how they do there nutritional levels at our clinic) was unbelievable. It has relieved so, so, so much stress for me. I am not trying to make light of the decision, because we strugged with it so much. But I can just say that it has been a help, not a hassle and I would do it again if faced with the same choice. Hope that helps!!

 

[babyluke]

I just wanted to encourage you that if you end up going the g tube route, it is really not that bad. Luke had his done when he was 8 months old and it was a horrible decision. I felt like such a failure. But we had tried everything. You can try every calorie adding trick in the book, but if they won't eat it it does no good and at the end of the day there is only one way to "force" them to eat and that is the feeding tube.
There are other threads going right now about feeding tubes, but they may be older so just to share our experience with it: Luke was 8 months old and only about 13 lbs. and probably 23 inches long, so he was horribly skinny and drastically off the curve. In fact, he wasn't even tracking upward on his own "curve" so we knew we had no choice. The surgery was not that bad. He was a little lethargic the first day, but back to normal by day two and home about 3 days after the surgery. The long tube they have at first is a little bit scarier--it just looks worse(in my opinion)and we had to make sure it stayed tucked up near his body so he did not pull it or crawl on it. The feeding pumps (assuming you will do overnight feeds) are really easy to use--you fill the bag, feed the line thru a couple places, prime it and push some buttons to set the rate and off you go. It takes us a couple of minutes each night at this point. A couple months after the surgery they can get a mickey button. They are easy to take care of, easy to replace and barely noticeable under their clothes. We have gone on vacation to the beach and to Disney with Luke's pump. He goes swimming and all of the things that other two year old's do.
Luke is two now, he is 26 lbs. and 33 inches tall. He is at the 57th percentile for his BMI. The feeling I had when we first got that green sticker (that is how they do there nutritional levels at our clinic) was unbelievable. It has relieved so, so, so much stress for me. I am not trying to make light of the decision, because we strugged with it so much. But I can just say that it has been a help, not a hassle and I would do it again if faced with the same choice. Hope that helps!!

 

[babyluke]

I just wanted to encourage you that if you end up going the g tube route, it is really not that bad. Luke had his done when he was 8 months old and it was a horrible decision. I felt like such a failure. But we had tried everything. You can try every calorie adding trick in the book, but if they won't eat it it does no good and at the end of the day there is only one way to "force" them to eat and that is the feeding tube.
There are other threads going right now about feeding tubes, but they may be older so just to share our experience with it: Luke was 8 months old and only about 13 lbs. and probably 23 inches long, so he was horribly skinny and drastically off the curve. In fact, he wasn't even tracking upward on his own "curve" so we knew we had no choice. The surgery was not that bad. He was a little lethargic the first day, but back to normal by day two and home about 3 days after the surgery. The long tube they have at first is a little bit scarier--it just looks worse(in my opinion)and we had to make sure it stayed tucked up near his body so he did not pull it or crawl on it. The feeding pumps (assuming you will do overnight feeds) are really easy to use--you fill the bag, feed the line thru a couple places, prime it and push some buttons to set the rate and off you go. It takes us a couple of minutes each night at this point. A couple months after the surgery they can get a mickey button. They are easy to take care of, easy to replace and barely noticeable under their clothes. We have gone on vacation to the beach and to Disney with Luke's pump. He goes swimming and all of the things that other two year old's do.
Luke is two now, he is 26 lbs. and 33 inches tall. He is at the 57th percentile for his BMI. The feeling I had when we first got that green sticker (that is how they do there nutritional levels at our clinic) was unbelievable. It has relieved so, so, so much stress for me. I am not trying to make light of the decision, because we strugged with it so much. But I can just say that it has been a help, not a hassle and I would do it again if faced with the same choice. Hope that helps!!

 

[babyluke]

I just wanted to encourage you that if you end up going the g tube route, it is really not that bad. Luke had his done when he was 8 months old and it was a horrible decision. I felt like such a failure. But we had tried everything. You can try every calorie adding trick in the book, but if they won't eat it it does no good and at the end of the day there is only one way to "force" them to eat and that is the feeding tube.
There are other threads going right now about feeding tubes, but they may be older so just to share our experience with it: Luke was 8 months old and only about 13 lbs. and probably 23 inches long, so he was horribly skinny and drastically off the curve. In fact, he wasn't even tracking upward on his own "curve" so we knew we had no choice. The surgery was not that bad. He was a little lethargic the first day, but back to normal by day two and home about 3 days after the surgery. The long tube they have at first is a little bit scarier--it just looks worse(in my opinion)and we had to make sure it stayed tucked up near his body so he did not pull it or crawl on it. The feeding pumps (assuming you will do overnight feeds) are really easy to use--you fill the bag, feed the line thru a couple places, prime it and push some buttons to set the rate and off you go. It takes us a couple of minutes each night at this point. A couple months after the surgery they can get a mickey button. They are easy to take care of, easy to replace and barely noticeable under their clothes. We have gone on vacation to the beach and to Disney with Luke's pump. He goes swimming and all of the things that other two year old's do.
Luke is two now, he is 26 lbs. and 33 inches tall. He is at the 57th percentile for his BMI. The feeling I had when we first got that green sticker (that is how they do there nutritional levels at our clinic) was unbelievable. It has relieved so, so, so much stress for me. I am not trying to make light of the decision, because we strugged with it so much. But I can just say that it has been a help, not a hassle and I would do it again if faced with the same choice. Hope that helps!!

 

[babyluke]

I just wanted to encourage you that if you end up going the g tube route, it is really not that bad. Luke had his done when he was 8 months old and it was a horrible decision. I felt like such a failure. But we had tried everything. You can try every calorie adding trick in the book, but if they won't eat it it does no good and at the end of the day there is only one way to "force" them to eat and that is the feeding tube.
<br />There are other threads going right now about feeding tubes, but they may be older so just to share our experience with it: Luke was 8 months old and only about 13 lbs. and probably 23 inches long, so he was horribly skinny and drastically off the curve. In fact, he wasn't even tracking upward on his own "curve" so we knew we had no choice. The surgery was not that bad. He was a little lethargic the first day, but back to normal by day two and home about 3 days after the surgery. The long tube they have at first is a little bit scarier--it just looks worse(in my opinion)and we had to make sure it stayed tucked up near his body so he did not pull it or crawl on it. The feeding pumps (assuming you will do overnight feeds) are really easy to use--you fill the bag, feed the line thru a couple places, prime it and push some buttons to set the rate and off you go. It takes us a couple of minutes each night at this point. A couple months after the surgery they can get a mickey button. They are easy to take care of, easy to replace and barely noticeable under their clothes. We have gone on vacation to the beach and to Disney with Luke's pump. He goes swimming and all of the things that other two year old's do.
<br />Luke is two now, he is 26 lbs. and 33 inches tall. He is at the 57th percentile for his BMI. The feeling I had when we first got that green sticker (that is how they do there nutritional levels at our clinic) was unbelievable. It has relieved so, so, so much stress for me. I am not trying to make light of the decision, because we strugged with it so much. But I can just say that it has been a help, not a hassle and I would do it again if faced with the same choice. Hope that helps!!