some much needed advice!!

butkool01 · Sep 21, 2009

hello,
so here i am 20 yrs old and think i may have lost my mind!! i have had my first child 7 months ago and its suppose to be the greatest moment of your life till you recieve that one call that can change it all. worst day of my life!

anyway i need some advice since i have no one to turn to and the one person i do (her father) still wants to be in denial about it all and doesnt understand it to begin with!! so my Jorja is 7 months old 14lbs (found out when she was 6 weeks) and has not gained weight for a month and this month has only managed to gain a lb even, i have tried everything we add butter to food, increased enzymes,she is even on the 24 calorie diet for formula, ive even resorted to feeding her yogurt to put on the pounds. she is 27 inches long however they still pressure me into the she needs to gain weight, and now they have enrolled her into pt cause she is so skinny that she wobbles when she sits up and falls over, i feel like ive been strecthed to my limit and need to know of other options for weight gain or maybe just someone to talk to. i feel like this is to much i mean shes on 11 medications already! i really dont wanna go to the feeding tube option, id really like to hear how others dealt and or feelings about the feeding tube..

thanks,
stressed mother

p.s also does anyone know how to relieve the gas pains cause by all these medication, nothing seems to work!!

butkool01 · Sep 21, 2009

hello,
so here i am 20 yrs old and think i may have lost my mind!! i have had my first child 7 months ago and its suppose to be the greatest moment of your life till you recieve that one call that can change it all. worst day of my life!

anyway i need some advice since i have no one to turn to and the one person i do (her father) still wants to be in denial about it all and doesnt understand it to begin with!! so my Jorja is 7 months old 14lbs (found out when she was 6 weeks) and has not gained weight for a month and this month has only managed to gain a lb even, i have tried everything we add butter to food, increased enzymes,she is even on the 24 calorie diet for formula, ive even resorted to feeding her yogurt to put on the pounds. she is 27 inches long however they still pressure me into the she needs to gain weight, and now they have enrolled her into pt cause she is so skinny that she wobbles when she sits up and falls over, i feel like ive been strecthed to my limit and need to know of other options for weight gain or maybe just someone to talk to. i feel like this is to much i mean shes on 11 medications already! i really dont wanna go to the feeding tube option, id really like to hear how others dealt and or feelings about the feeding tube..

thanks,
stressed mother

p.s also does anyone know how to relieve the gas pains cause by all these medication, nothing seems to work!!

butkool01 · Sep 21, 2009

hello,
so here i am 20 yrs old and think i may have lost my mind!! i have had my first child 7 months ago and its suppose to be the greatest moment of your life till you recieve that one call that can change it all. worst day of my life!

anyway i need some advice since i have no one to turn to and the one person i do (her father) still wants to be in denial about it all and doesnt understand it to begin with!! so my Jorja is 7 months old 14lbs (found out when she was 6 weeks) and has not gained weight for a month and this month has only managed to gain a lb even, i have tried everything we add butter to food, increased enzymes,she is even on the 24 calorie diet for formula, ive even resorted to feeding her yogurt to put on the pounds. she is 27 inches long however they still pressure me into the she needs to gain weight, and now they have enrolled her into pt cause she is so skinny that she wobbles when she sits up and falls over, i feel like ive been strecthed to my limit and need to know of other options for weight gain or maybe just someone to talk to. i feel like this is to much i mean shes on 11 medications already! i really dont wanna go to the feeding tube option, id really like to hear how others dealt and or feelings about the feeding tube..

thanks,
stressed mother

p.s also does anyone know how to relieve the gas pains cause by all these medication, nothing seems to work!!

butkool01 · Sep 21, 2009

hello,
so here i am 20 yrs old and think i may have lost my mind!! i have had my first child 7 months ago and its suppose to be the greatest moment of your life till you recieve that one call that can change it all. worst day of my life!

anyway i need some advice since i have no one to turn to and the one person i do (her father) still wants to be in denial about it all and doesnt understand it to begin with!! so my Jorja is 7 months old 14lbs (found out when she was 6 weeks) and has not gained weight for a month and this month has only managed to gain a lb even, i have tried everything we add butter to food, increased enzymes,she is even on the 24 calorie diet for formula, ive even resorted to feeding her yogurt to put on the pounds. she is 27 inches long however they still pressure me into the she needs to gain weight, and now they have enrolled her into pt cause she is so skinny that she wobbles when she sits up and falls over, i feel like ive been strecthed to my limit and need to know of other options for weight gain or maybe just someone to talk to. i feel like this is to much i mean shes on 11 medications already! i really dont wanna go to the feeding tube option, id really like to hear how others dealt and or feelings about the feeding tube..

thanks,
stressed mother

p.s also does anyone know how to relieve the gas pains cause by all these medication, nothing seems to work!!

butkool01 · Sep 21, 2009

hello,
 so here i am 20 yrs old and think i may have lost my mind!! i have had my first child 7 months ago and its suppose to be the greatest moment of your life till you recieve that one call that can change it all. worst day of my life!
 
 anyway i need some advice since i have no one to turn to and the one person i do (her father) still wants to be in denial about it all and doesnt understand it to begin with!! so my Jorja is 7 months old 14lbs (found out when she was 6 weeks) and has not gained weight for a month and this month has only managed to gain a lb even, i have tried everything we add butter to food, increased enzymes,she is even on the 24 calorie diet for formula, ive even resorted to feeding her yogurt to put on the pounds. she is 27 inches long however they still pressure me into the she needs to gain weight, and now they have enrolled her into pt cause she is so skinny that she wobbles when she sits up and falls over, i feel like ive been strecthed to my limit and need to know of other options for weight gain or maybe just someone to talk to. i feel like this is to much i mean shes on 11 medications already! i really dont wanna go to the feeding tube option, id really like to hear how others dealt and or feelings about the feeding tube..
 
 thanks,
 stressed mother
 
 p.s also does anyone know how to relieve the gas pains cause by all these medication, nothing seems to work!!

Ratatosk · Sep 21, 2009

We used the higher calorie formula. Lots of yo baby yogurt, though if I didn't have that, I'd find one with the highest calories and/or sometimes would add cream. Once she was given the okay for regular food -- his doctor suggested grinding up what we were having -- I would give him ground up chicken ala king, spaghetti -- sometimes adding olive oil... Baby food mac and cheese and meats were his favorite. Oatmeal with pears, I'd add butter. If I found something he enjoyed, I'd just shovel it in.

As he got older, I would add cream to things as well.

Ratatosk · Sep 21, 2009

We used the higher calorie formula. Lots of yo baby yogurt, though if I didn't have that, I'd find one with the highest calories and/or sometimes would add cream. Once she was given the okay for regular food -- his doctor suggested grinding up what we were having -- I would give him ground up chicken ala king, spaghetti -- sometimes adding olive oil... Baby food mac and cheese and meats were his favorite. Oatmeal with pears, I'd add butter. If I found something he enjoyed, I'd just shovel it in.

As he got older, I would add cream to things as well.

Ratatosk · Sep 21, 2009

We used the higher calorie formula. Lots of yo baby yogurt, though if I didn't have that, I'd find one with the highest calories and/or sometimes would add cream. Once she was given the okay for regular food -- his doctor suggested grinding up what we were having -- I would give him ground up chicken ala king, spaghetti -- sometimes adding olive oil... Baby food mac and cheese and meats were his favorite. Oatmeal with pears, I'd add butter. If I found something he enjoyed, I'd just shovel it in.

As he got older, I would add cream to things as well.

Ratatosk · Sep 21, 2009

We used the higher calorie formula. Lots of yo baby yogurt, though if I didn't have that, I'd find one with the highest calories and/or sometimes would add cream. Once she was given the okay for regular food -- his doctor suggested grinding up what we were having -- I would give him ground up chicken ala king, spaghetti -- sometimes adding olive oil... Baby food mac and cheese and meats were his favorite. Oatmeal with pears, I'd add butter. If I found something he enjoyed, I'd just shovel it in.

As he got older, I would add cream to things as well.

Ratatosk · Sep 21, 2009

We used the higher calorie formula. Lots of yo baby yogurt, though if I didn't have that, I'd find one with the highest calories and/or sometimes would add cream. Once she was given the okay for regular food -- his doctor suggested grinding up what we were having -- I would give him ground up chicken ala king, spaghetti -- sometimes adding olive oil... Baby food mac and cheese and meats were his favorite. Oatmeal with pears, I'd add butter. If I found something he enjoyed, I'd just shovel it in.
 
 As he got older, I would add cream to things as well.

amityvsvenom · Sep 21, 2009

My daughter has a g tube, and that i how we keep her weight at the 19 pounds it is at right now. She is 1 year old, 25 inches long and 19 lbs 8 oz. Has your doctor suggested a g tube? Or do they think maybe it can be corrected before it gets that bad?
I honestly put butter, salt, cream, sugar, ect on EVERYTHING that goes into her mouth and through her g tube. There is a cream at the grocery store that has 50 calories pre tablespoon. I put two tablespoons in her bottle every morning and every time I get her cows milk. I started out with half a tablespoon and worked up to make sure her tummy could handle the cream because it was so high in fat. I would suggest not using yogurt because there really isnt much calories in there compared to other things you could use...like icecream. I am not sure if she can chew yet, but before skye could chew I bought a food processor and I put everything I could find at the store that had high fat calorie in there and gave it to her. I hope I helped a little bit. You can always PM me if you want! Im here to talk. I am also 20 years old, I had her when I was 19 and she was DX at birth. Has has 4 surgeries and a LONG list of medications, nebulizer treatments and CPT treatments ect.

amityvsvenom · Sep 21, 2009

My daughter has a g tube, and that i how we keep her weight at the 19 pounds it is at right now. She is 1 year old, 25 inches long and 19 lbs 8 oz. Has your doctor suggested a g tube? Or do they think maybe it can be corrected before it gets that bad?
I honestly put butter, salt, cream, sugar, ect on EVERYTHING that goes into her mouth and through her g tube. There is a cream at the grocery store that has 50 calories pre tablespoon. I put two tablespoons in her bottle every morning and every time I get her cows milk. I started out with half a tablespoon and worked up to make sure her tummy could handle the cream because it was so high in fat. I would suggest not using yogurt because there really isnt much calories in there compared to other things you could use...like icecream. I am not sure if she can chew yet, but before skye could chew I bought a food processor and I put everything I could find at the store that had high fat calorie in there and gave it to her. I hope I helped a little bit. You can always PM me if you want! Im here to talk. I am also 20 years old, I had her when I was 19 and she was DX at birth. Has has 4 surgeries and a LONG list of medications, nebulizer treatments and CPT treatments ect.

amityvsvenom · Sep 21, 2009

My daughter has a g tube, and that i how we keep her weight at the 19 pounds it is at right now. She is 1 year old, 25 inches long and 19 lbs 8 oz. Has your doctor suggested a g tube? Or do they think maybe it can be corrected before it gets that bad?
I honestly put butter, salt, cream, sugar, ect on EVERYTHING that goes into her mouth and through her g tube. There is a cream at the grocery store that has 50 calories pre tablespoon. I put two tablespoons in her bottle every morning and every time I get her cows milk. I started out with half a tablespoon and worked up to make sure her tummy could handle the cream because it was so high in fat. I would suggest not using yogurt because there really isnt much calories in there compared to other things you could use...like icecream. I am not sure if she can chew yet, but before skye could chew I bought a food processor and I put everything I could find at the store that had high fat calorie in there and gave it to her. I hope I helped a little bit. You can always PM me if you want! Im here to talk. I am also 20 years old, I had her when I was 19 and she was DX at birth. Has has 4 surgeries and a LONG list of medications, nebulizer treatments and CPT treatments ect.

amityvsvenom · Sep 21, 2009

My daughter has a g tube, and that i how we keep her weight at the 19 pounds it is at right now. She is 1 year old, 25 inches long and 19 lbs 8 oz. Has your doctor suggested a g tube? Or do they think maybe it can be corrected before it gets that bad?
I honestly put butter, salt, cream, sugar, ect on EVERYTHING that goes into her mouth and through her g tube. There is a cream at the grocery store that has 50 calories pre tablespoon. I put two tablespoons in her bottle every morning and every time I get her cows milk. I started out with half a tablespoon and worked up to make sure her tummy could handle the cream because it was so high in fat. I would suggest not using yogurt because there really isnt much calories in there compared to other things you could use...like icecream. I am not sure if she can chew yet, but before skye could chew I bought a food processor and I put everything I could find at the store that had high fat calorie in there and gave it to her. I hope I helped a little bit. You can always PM me if you want! Im here to talk. I am also 20 years old, I had her when I was 19 and she was DX at birth. Has has 4 surgeries and a LONG list of medications, nebulizer treatments and CPT treatments ect.

amityvsvenom · Sep 21, 2009

My daughter has a g tube, and that i how we keep her weight at the 19 pounds it is at right now. She is 1 year old, 25 inches long and 19 lbs 8 oz. Has your doctor suggested a g tube? Or do they think maybe it can be corrected before it gets that bad?
 I honestly put butter, salt, cream, sugar, ect on EVERYTHING that goes into her mouth and through her g tube. There is a cream at the grocery store that has 50 calories pre tablespoon. I put two tablespoons in her bottle every morning and every time I get her cows milk. I started out with half a tablespoon and worked up to make sure her tummy could handle the cream because it was so high in fat. I would suggest not using yogurt because there really isnt much calories in there compared to other things you could use...like icecream. I am not sure if she can chew yet, but before skye could chew I bought a food processor and I put everything I could find at the store that had high fat calorie in there and gave it to her. I hope I helped a little bit. You can always PM me if you want! Im here to talk. I am also 20 years old, I had her when I was 19 and she was DX at birth. Has has 4 surgeries and a LONG list of medications, nebulizer treatments and CPT treatments ect.

ashmomo · Sep 21, 2009

Hi
I have also been where you are and have started over again, almost in a worse situation now.
Anyways...my daughter is 4 1/2 months old and weighs 9lbs 12 oz. She had 2 surgeries and was in the hospital for 2 1/2 mos and most of it without food...only TPN. She is said to have 'poor weight gain' at this point. They did this with my last too and she is 4 years old now and just making it to the 45% for BMI. We have worked hard to get her to eat and try to gain weight. We NEVER gave into the feeding tube. If she had become unhealthy or fell off the charts I would have been more open to the tube, but that was not the case. We, the parents, are both small and don't expect our children to be big.
Is the baby healthy otherwise or having lots of lung issues as well? If she is having lung problems already...it may be necessary for the weight to help her fight illnesses.
You have to make the right decision for you and your child. You will get lots of different advice on this forum. Good luck.
PM me if you have any questions or need someone to talk to. I am 25 and had my first with CF when I was 20.

ashmomo · Sep 21, 2009

Hi
I have also been where you are and have started over again, almost in a worse situation now.
Anyways...my daughter is 4 1/2 months old and weighs 9lbs 12 oz. She had 2 surgeries and was in the hospital for 2 1/2 mos and most of it without food...only TPN. She is said to have 'poor weight gain' at this point. They did this with my last too and she is 4 years old now and just making it to the 45% for BMI. We have worked hard to get her to eat and try to gain weight. We NEVER gave into the feeding tube. If she had become unhealthy or fell off the charts I would have been more open to the tube, but that was not the case. We, the parents, are both small and don't expect our children to be big.
Is the baby healthy otherwise or having lots of lung issues as well? If she is having lung problems already...it may be necessary for the weight to help her fight illnesses.
You have to make the right decision for you and your child. You will get lots of different advice on this forum. Good luck.
PM me if you have any questions or need someone to talk to. I am 25 and had my first with CF when I was 20.

ashmomo · Sep 21, 2009

Hi
I have also been where you are and have started over again, almost in a worse situation now.
Anyways...my daughter is 4 1/2 months old and weighs 9lbs 12 oz. She had 2 surgeries and was in the hospital for 2 1/2 mos and most of it without food...only TPN. She is said to have 'poor weight gain' at this point. They did this with my last too and she is 4 years old now and just making it to the 45% for BMI. We have worked hard to get her to eat and try to gain weight. We NEVER gave into the feeding tube. If she had become unhealthy or fell off the charts I would have been more open to the tube, but that was not the case. We, the parents, are both small and don't expect our children to be big.
Is the baby healthy otherwise or having lots of lung issues as well? If she is having lung problems already...it may be necessary for the weight to help her fight illnesses.
You have to make the right decision for you and your child. You will get lots of different advice on this forum. Good luck.
PM me if you have any questions or need someone to talk to. I am 25 and had my first with CF when I was 20.

ashmomo · Sep 21, 2009

Hi
I have also been where you are and have started over again, almost in a worse situation now.
Anyways...my daughter is 4 1/2 months old and weighs 9lbs 12 oz. She had 2 surgeries and was in the hospital for 2 1/2 mos and most of it without food...only TPN. She is said to have 'poor weight gain' at this point. They did this with my last too and she is 4 years old now and just making it to the 45% for BMI. We have worked hard to get her to eat and try to gain weight. We NEVER gave into the feeding tube. If she had become unhealthy or fell off the charts I would have been more open to the tube, but that was not the case. We, the parents, are both small and don't expect our children to be big.
Is the baby healthy otherwise or having lots of lung issues as well? If she is having lung problems already...it may be necessary for the weight to help her fight illnesses.
You have to make the right decision for you and your child. You will get lots of different advice on this forum. Good luck.
PM me if you have any questions or need someone to talk to. I am 25 and had my first with CF when I was 20.

ashmomo · Sep 21, 2009

Hi
 I have also been where you are and have started over again, almost in a worse situation now.
 Anyways...my daughter is 4 1/2 months old and weighs 9lbs 12 oz. She had 2 surgeries and was in the hospital for 2 1/2 mos and most of it without food...only TPN. She is said to have 'poor weight gain' at this point. They did this with my last too and she is 4 years old now and just making it to the 45% for BMI. We have worked hard to get her to eat and try to gain weight. We NEVER gave into the feeding tube. If she had become unhealthy or fell off the charts I would have been more open to the tube, but that was not the case. We, the parents, are both small and don't expect our children to be big.
 Is the baby healthy otherwise or having lots of lung issues as well? If she is having lung problems already...it may be necessary for the weight to help her fight illnesses.
 You have to make the right decision for you and your child. You will get lots of different advice on this forum. Good luck.
 PM me if you have any questions or need someone to talk to. I am 25 and had my first with CF when I was 20.

some much needed advice!!

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