Mommy2Alysa
New member
HI There! We just found out that we are having another baby in September with CF(we got the genetic amnio testing done). Does anyone hae any advice on how to cope with having two kids with CF?
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About to have another CF child
- Thread starter Mommy2Alysa
- Start date
Mommy2Alysa
New member
HI There! We just found out that we are having another baby in September with CF(we got the genetic amnio testing done). Does anyone hae any advice on how to cope with having two kids with CF?
Mommy2Alysa
New member
HI There! We just found out that we are having another baby in September with CF(we got the genetic amnio testing done). Does anyone hae any advice on how to cope with having two kids with CF?
S
sdelorenzo
Guest
First of all congratulations on the sweet baby you are expecting! I was at a cf parents support group meeting today when a mom asked me how I deal with two kids with cf. I told her we are just busy and I don't know any differently. Also, while we make sure my kids don't drink the same drinks, etc. It took 3 years for them to both culture a same bacteria - staph. So that is a blessing. My daughter just turned two when my son was born. Her doctor said it was best that I keep my daughter out of school for a while since I had a newborn with cf. Well, I decided my daughter (and I) needed her to go to one day a week to Mother's day out and I am so glad I sent her. She LOVED the interaction with the kids and it kept our lives a bit normal and gave me a little break.
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all congratulations on the sweet baby you are expecting! I was at a cf parents support group meeting today when a mom asked me how I deal with two kids with cf. I told her we are just busy and I don't know any differently. Also, while we make sure my kids don't drink the same drinks, etc. It took 3 years for them to both culture a same bacteria - staph. So that is a blessing. My daughter just turned two when my son was born. Her doctor said it was best that I keep my daughter out of school for a while since I had a newborn with cf. Well, I decided my daughter (and I) needed her to go to one day a week to Mother's day out and I am so glad I sent her. She LOVED the interaction with the kids and it kept our lives a bit normal and gave me a little break.
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all congratulations on the sweet baby you are expecting! I was at a cf parents support group meeting today when a mom asked me how I deal with two kids with cf. I told her we are just busy and I don't know any differently. Also, while we make sure my kids don't drink the same drinks, etc. It took 3 years for them to both culture a same bacteria - staph. So that is a blessing. My daughter just turned two when my son was born. Her doctor said it was best that I keep my daughter out of school for a while since I had a newborn with cf. Well, I decided my daughter (and I) needed her to go to one day a week to Mother's day out and I am so glad I sent her. She LOVED the interaction with the kids and it kept our lives a bit normal and gave me a little break.
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I would say the biggest issue for me when my son was diagnosed while I was pregnant was just the acceptance that both of our kids were going to be facing this disease. We didn't know my daughter had cf until she was a month old. So I found going through a pregnancy knowing was difficult. But it did help us monitor his bowel problems while I was pregnant and we were prepared for his meconium illues. They are both joys and we are so blessed to have them both. They do have different issues, my son gains weight really well, but not my daughter for example. I had another chance to learn from the mistakes I made with my first child. If my son refused his bottle fine, I knew he would eat later. I didn't stress over feeding him like I did with my daughter and it is likely one of the reasons why he eats well I think. Your new baby will be just as beautiful as your first!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Mommy2Alysa
New member
Thanks its comforting knowing there are other moms out there with more than one CF child.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
Mommy2Alysa
New member
Thanks its comforting knowing there are other moms out there with more than one CF child.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
Mommy2Alysa
New member
Thanks its comforting knowing there are other moms out there with more than one CF child.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
As you mentioned, at least our kids can support each other and help each other cope with the difficulties of CF. It wil be an adventure for sure but my husband and I are fully prepared to enjoy it.
Thanks again.
Congratulations to you and baby #2!
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
Congratulations to you and baby #2!
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
Congratulations to you and baby #2!
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
My boys are soon to be 16 and soon to be 12 both with CF. We learned my younger son had CF via amnio. It was a huge shock, but by the time he was born, we were over the grieving and shock about the new diagnosis and ready for the exciting new baby part.
Just like Sharon said, we don't know any different. Our kids are our kids. We cope as best we can. The kids have a special bond. They help each other with meds, treatments, clinic visits etc. My boys do everything together and have always grown the same bacteria so the meds have been the same(except for pseudomonas- one does, one doesn't). The hardest thing for us is when one is in the hospital and the other isn't.
My older son was just saying today that he's "glad (imagine) that both he and his bro have CF. Otherwise it would be weird". He is right, I can't imagine having it any other way.
I don't mean to imply that its easy to have two w/cf, but we take it day by day.
Please PM me with any questions you have about my kids or anything. I will be happy to share my experience.
Mommy2Alysa
New member
Thanks and via amnio was how this baby was diagnosed with CF. With Alysa, our daughter, she wasnt diagnosed until she was about a year and a half old so even that period was tough cause we were always in the ER with her due to her vomitting and everything.
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
Mommy2Alysa
New member
Thanks and via amnio was how this baby was diagnosed with CF. With Alysa, our daughter, she wasnt diagnosed until she was about a year and a half old so even that period was tough cause we were always in the ER with her due to her vomitting and everything.
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
Mommy2Alysa
New member
Thanks and via amnio was how this baby was diagnosed with CF. With Alysa, our daughter, she wasnt diagnosed until she was about a year and a half old so even that period was tough cause we were always in the ER with her due to her vomitting and everything.
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
At least we know ahead of time this way and we can prepare mentally for it before this one comes along and I am sure you're right. Alysa and this baby (which I feel is a boy - we will find out in a few weeks) will be able to have a special bond and do their treatments and stuff together.
As much as I dont like to say it but I am sort of glad this one has CF, as your son said, because then it would be weird fo Alysa if it didnt. I dont want her to feel like an outsider or anything and this way she can do the big sister thing and show her younger sibling how to be a champ at doing her machine and her "pat-pats" (physio).
Don't be surprised if I message ya some day as I am sure having two with CF is difficult but having to go through twice as many hospital stays would be tough. Alysa has already been in the hospital twice since November when she was diagnosed and one was becuase she had pseudomonous (howver you spell it and luckily they dont think it has colonized).
Thanks!
Hi, I have two girls w/CF. My soon to be 20yr old was diagnosed one week before my youngest was born. To be honest, I didn't know anything about CF except what I read on those collection jars at the random restaurant check out counter. My husband knew more but not much more. My girls are three yrs apart. As others have said already... you just adjust your time and do what has to be done. We know no other way. I do remember the days when we didn't have to lug everything to do with treatments but we still lugged tons of kid stuff. My girls didn't have to do much until they were older. One treatment a day until they were about 12. We have never kept the girls from doing/trying whatever they wanted. Swim lessons, gymnastics, ballet, school field trips, sleepovers, multi-nite school trips, Girl Scouts, overnite camp, camping trips, cheerleading. I was fortunate that I could be a stay at home mom. I often wondered how a mom of a CF child could work. Not the how can you leave your child at home but more of how can you hold on to your job. One thing you have to remember is even though your two children both have CF, they will most likely have very different CF. Sometimes hard to understand but it's true.
Congratulations on your upcoming blessed event.
Congratulations on your upcoming blessed event.
Hi, I have two girls w/CF. My soon to be 20yr old was diagnosed one week before my youngest was born. To be honest, I didn't know anything about CF except what I read on those collection jars at the random restaurant check out counter. My husband knew more but not much more. My girls are three yrs apart. As others have said already... you just adjust your time and do what has to be done. We know no other way. I do remember the days when we didn't have to lug everything to do with treatments but we still lugged tons of kid stuff. My girls didn't have to do much until they were older. One treatment a day until they were about 12. We have never kept the girls from doing/trying whatever they wanted. Swim lessons, gymnastics, ballet, school field trips, sleepovers, multi-nite school trips, Girl Scouts, overnite camp, camping trips, cheerleading. I was fortunate that I could be a stay at home mom. I often wondered how a mom of a CF child could work. Not the how can you leave your child at home but more of how can you hold on to your job. One thing you have to remember is even though your two children both have CF, they will most likely have very different CF. Sometimes hard to understand but it's true.
Congratulations on your upcoming blessed event.
Congratulations on your upcoming blessed event.