Am i waiting too long?

T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
S

SaraBlue

New member
My son had his first appt. at 10 days old. The RT started us on cpt, he had a throat swab and started on enzymes. Also scheduled a fecal fat test. Not sure why the bf didn't work out for you, but it was even more important to me to bf because of the cf. Not that any of the dr's encouraged it!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
T

TonyaH

Guest
At sounds like you are ready to jump in and start taking care of this disease, and for that...KUDDOS! My son is 9 now, but at 2 months of age he was failure to thrive. I was bottle feeding and I remember how fortunate I felt to be able to document every ounce he drank. Had I been nursing I could not have given the doctors such an exact schedule of his intake, output, etc. We, too, were put on Pregestimil and yes, it was extremely expensive and had to be mixed in the blender. However, within a week Andrew was gaining weight, adjusted to his enzymes in applesauce, and he looked like a completely different baby. I wish you the best of luck as you work with your doctor on a treatment schedule. Keep us posted!
 
R

Ratatosk

Administrator
Staff member
I didn't BF and we tried pregistimil for about a week -- think the dietician said the cheapest source was buying directly from the company. DS hated it -- he'd clamp his mouth shut and refused to eat it -- nurses told us to force feed him -- move his jaw, squeeze the bottle -- just made things worse and he developed a bottle aversion. We did taste it --- bleah -- tasted like vomit and the way road kill smells. Our CF doctor said to feed him what he'll eat, so we switched to infamil lipil made with a greater ratio of powder to water, so as to bump up the calories.

Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!

Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.
 
R

Ratatosk

Administrator
Staff member
I didn't BF and we tried pregistimil for about a week -- think the dietician said the cheapest source was buying directly from the company. DS hated it -- he'd clamp his mouth shut and refused to eat it -- nurses told us to force feed him -- move his jaw, squeeze the bottle -- just made things worse and he developed a bottle aversion. We did taste it --- bleah -- tasted like vomit and the way road kill smells. Our CF doctor said to feed him what he'll eat, so we switched to infamil lipil made with a greater ratio of powder to water, so as to bump up the calories.

Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!

Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.
 
R

Ratatosk

Administrator
Staff member
I didn't BF and we tried pregistimil for about a week -- think the dietician said the cheapest source was buying directly from the company. DS hated it -- he'd clamp his mouth shut and refused to eat it -- nurses told us to force feed him -- move his jaw, squeeze the bottle -- just made things worse and he developed a bottle aversion. We did taste it --- bleah -- tasted like vomit and the way road kill smells. Our CF doctor said to feed him what he'll eat, so we switched to infamil lipil made with a greater ratio of powder to water, so as to bump up the calories.

Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!

Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.
 
R

Ratatosk

Administrator
Staff member
I didn't BF and we tried pregistimil for about a week -- think the dietician said the cheapest source was buying directly from the company. DS hated it -- he'd clamp his mouth shut and refused to eat it -- nurses told us to force feed him -- move his jaw, squeeze the bottle -- just made things worse and he developed a bottle aversion. We did taste it --- bleah -- tasted like vomit and the way road kill smells. Our CF doctor said to feed him what he'll eat, so we switched to infamil lipil made with a greater ratio of powder to water, so as to bump up the calories.

Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!

Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.
 
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