About to have another CF child

M

Mommy2Alysa

New member
Thank you so much!

It's nice to hear that there are other families out there who had another child after having one with CF. I have been told by a few people that i am "crazy" and they cant understand why I would go through with the pregnancy. To me, the option was easy and I love this baby no less than if it was "normal and healthy"

I am sure that my girls, this one is a girl as well, will have the same competition with treatments as yours did and I am actually sort of looking forward to having another CFer. I mean sure, the hospital scares, doctor appts, and everything will be nerve-racking and very hard but having someone else for my girls to turn to (each other) and having someone understand them will be so good for them.

Neither my husband or I have CF and have no clue what they will have go through in life except what we can imagine. Before Alysa was dx at 18 months I had never even really heard of CF before.

Where do you get one of those vests from? They sound like such a great idea as trying to do her physio is practically impossible, I mean what 2 year old likes being held down and patted on for 20 mins 3times a day? LOL
 
M

Mommy2Alysa

New member
Thank you so much!

It's nice to hear that there are other families out there who had another child after having one with CF. I have been told by a few people that i am "crazy" and they cant understand why I would go through with the pregnancy. To me, the option was easy and I love this baby no less than if it was "normal and healthy"

I am sure that my girls, this one is a girl as well, will have the same competition with treatments as yours did and I am actually sort of looking forward to having another CFer. I mean sure, the hospital scares, doctor appts, and everything will be nerve-racking and very hard but having someone else for my girls to turn to (each other) and having someone understand them will be so good for them.

Neither my husband or I have CF and have no clue what they will have go through in life except what we can imagine. Before Alysa was dx at 18 months I had never even really heard of CF before.

Where do you get one of those vests from? They sound like such a great idea as trying to do her physio is practically impossible, I mean what 2 year old likes being held down and patted on for 20 mins 3times a day? LOL
 
T

tammykrumrey

Guest
Ask your daughters clinic about the Vest. It is a prescribed device. They are very expensive. Fortunately my insurance covered everything minus $2,000.00 on each machine.

Again, congrats on the new baby girl<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Ask your daughters clinic about the Vest. It is a prescribed device. They are very expensive. Fortunately my insurance covered everything minus $2,000.00 on each machine.

Again, congrats on the new baby girl<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Ask your daughters clinic about the Vest. It is a prescribed device. They are very expensive. Fortunately my insurance covered everything minus $2,000.00 on each machine.

Again, congrats on the new baby girl<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jane

Digital opinion leader
Our insurance paid too. It depends who you have, but mine considered it respiratory equipment.
 
J

Jane

Digital opinion leader
Our insurance paid too. It depends who you have, but mine considered it respiratory equipment.
 
J

Jane

Digital opinion leader
Our insurance paid too. It depends who you have, but mine considered it respiratory equipment.
 
T

tara

New member
I just wanted to confirm the comradery of having a sibling with CF. I am a 31 year old female with CF and I have a 29 year old brother with CF. I have two other siblings, no CF. My brother and I are very close because of our CF relationship. We grew up with one respiratory treatment per day. (nebs and CPT by hand) My mom did most of it for 18 years (then I went to college), but my dad helped out on weekends. So we weren't able to do treatments "together" but we did go to all our office visits together and had labs drawn etc. We were fairly healthy growing up, but I have to say, I think CF regimes have become much more aggressive over the last 30 years.

We grew up going to CF camp together as well. I think that part made my non-CF siblings a little jealous. Since it was essentially a "free" camp, my parents could afford it, but they couldn't afford an annual getaway for the non-CFers. We did family vacations of course. I do have a good relationship with all my siblings.

We were never excluded from any event or extra curricular activity because we had CF. Our parents were not over protective. No special precautions were taken (that I'm aware of)

About the vest. I have the SmartVest now. I like it ok. My insurance has not paid for it yet (I've had it for 10 months) but SmartVest brought the equipment out to me anyway, and said not to worry about paying for it. They will get the money from the insurance through appeals. I have an HMO and SmartVest is not the "preferred" dealer of vests. They would willingly pay for another brand (not sure which one) but my doc specifically prescribes this one for all his CF clinic patients. At the time I didn't know any better and didn't do any research on any type of vests.

Hope some of this helps. Congrats on the new baby Mommy2Alysa!

Tara
 
T

tara

New member
I just wanted to confirm the comradery of having a sibling with CF. I am a 31 year old female with CF and I have a 29 year old brother with CF. I have two other siblings, no CF. My brother and I are very close because of our CF relationship. We grew up with one respiratory treatment per day. (nebs and CPT by hand) My mom did most of it for 18 years (then I went to college), but my dad helped out on weekends. So we weren't able to do treatments "together" but we did go to all our office visits together and had labs drawn etc. We were fairly healthy growing up, but I have to say, I think CF regimes have become much more aggressive over the last 30 years.

We grew up going to CF camp together as well. I think that part made my non-CF siblings a little jealous. Since it was essentially a "free" camp, my parents could afford it, but they couldn't afford an annual getaway for the non-CFers. We did family vacations of course. I do have a good relationship with all my siblings.

We were never excluded from any event or extra curricular activity because we had CF. Our parents were not over protective. No special precautions were taken (that I'm aware of)

About the vest. I have the SmartVest now. I like it ok. My insurance has not paid for it yet (I've had it for 10 months) but SmartVest brought the equipment out to me anyway, and said not to worry about paying for it. They will get the money from the insurance through appeals. I have an HMO and SmartVest is not the "preferred" dealer of vests. They would willingly pay for another brand (not sure which one) but my doc specifically prescribes this one for all his CF clinic patients. At the time I didn't know any better and didn't do any research on any type of vests.

Hope some of this helps. Congrats on the new baby Mommy2Alysa!

Tara
 
T

tara

New member
I just wanted to confirm the comradery of having a sibling with CF. I am a 31 year old female with CF and I have a 29 year old brother with CF. I have two other siblings, no CF. My brother and I are very close because of our CF relationship. We grew up with one respiratory treatment per day. (nebs and CPT by hand) My mom did most of it for 18 years (then I went to college), but my dad helped out on weekends. So we weren't able to do treatments "together" but we did go to all our office visits together and had labs drawn etc. We were fairly healthy growing up, but I have to say, I think CF regimes have become much more aggressive over the last 30 years.

We grew up going to CF camp together as well. I think that part made my non-CF siblings a little jealous. Since it was essentially a "free" camp, my parents could afford it, but they couldn't afford an annual getaway for the non-CFers. We did family vacations of course. I do have a good relationship with all my siblings.

We were never excluded from any event or extra curricular activity because we had CF. Our parents were not over protective. No special precautions were taken (that I'm aware of)

About the vest. I have the SmartVest now. I like it ok. My insurance has not paid for it yet (I've had it for 10 months) but SmartVest brought the equipment out to me anyway, and said not to worry about paying for it. They will get the money from the insurance through appeals. I have an HMO and SmartVest is not the "preferred" dealer of vests. They would willingly pay for another brand (not sure which one) but my doc specifically prescribes this one for all his CF clinic patients. At the time I didn't know any better and didn't do any research on any type of vests.

Hope some of this helps. Congrats on the new baby Mommy2Alysa!

Tara
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
C

cfmomma

New member
Congrats on the baby! I have a six year old and a 2month old baby with CF. I haven't posted in awhile because I have been busy and too emotional, but I am gradually beginning to feel human again. We found out our second son also has CF when he was ten days old and I am still an emotional wreck. How did you find out, amnio/CVS ? We sent cord blood to Ambry right after he was born. My first son was diagnosed at 18 months and so this is the first time i have dealt with a CF newborn. The only thing we have to do right now is give him enzymes and supplement breastfeeding with extra formula. No breathing treatments yet. He is doing good except for slow weight gain.
Clinic visits are much more interesting! They take a little longer, but it's no biggie. I am amazed by how well my six year old has dealt with this. He was in the room when I got the "dreaded diagnosis" and cried with me, but he comforted me also. He looked into his baby brothers eyes and told him that CF was hard but they can do it together. He explains every little treatment, medicine, PFT's, etc... to his brother. It's bittersweet to see this interaction and new dynamic in their brotherly relationship. I am sad they have CF but I know they will be closer because of it.

I honestly have not dealt with my emotions the way I should. I have been in denial and depression, but right now i am just pissed. I want to shake the crap out of other new moms who have healthy babies. My sister-in-law is concerned because she thinks her 5 month old baby is too big for his age and has almost tripled his birthweight. My baby doesn't even weigh ten pounds! If I have one more little old lady come up to me and tell me to feed my baby more I am going to scream. The only advice I have for coping is to look at your baby and your 2 year old and love them. When my emotions get the best of me I crawl into bed with my sweet boys and snuggle with them, it makes everything better! Good Luck and feel free to email me when times are tough.
 
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