New mom with 5 month old daughter w/cf

[Ratatosk]

My mind was racing when DS was diagnosed with what ifs, what should I do? Do we need to get rid of the dog? Do I need to quit my job?....

DS has been in daycare/preschool since he was 3 months old. We thought long and hard about what we should do after his diagnosis. Visited with his CF doctor. Eventually he will be going to school and interacting with other kids, being exposed to germs. Despite being in a center, his class is quite small and he loves going.

 

[Ratatosk]

My mind was racing when DS was diagnosed with what ifs, what should I do? Do we need to get rid of the dog? Do I need to quit my job?....

DS has been in daycare/preschool since he was 3 months old. We thought long and hard about what we should do after his diagnosis. Visited with his CF doctor. Eventually he will be going to school and interacting with other kids, being exposed to germs. Despite being in a center, his class is quite small and he loves going.

 

[zoeg]

Hi Rebecca!

Great topic! I feel so much in the same boat as you. I have a 13 month old with CF and some days are great, others I am a nervous wreck driving my family crazy. Most days are good, and as Liza said it does become so routine. I agree with her as well to enjoy your child! I wish so much I had done that in the first year more (and even now) but I still worry, worry, worry. I will say that on our first clinic visit our CF doc said that even though the life expectancy is 36 now, those people were born in 1970. Our little guys are born in the 2000s so we can expect much longer lives for them. That has really stuck with me, especially when I am having a bad day. Welcome!

Zoe
mom to Kate

 

[zoeg]

Hi Rebecca!

Great topic! I feel so much in the same boat as you. I have a 13 month old with CF and some days are great, others I am a nervous wreck driving my family crazy. Most days are good, and as Liza said it does become so routine. I agree with her as well to enjoy your child! I wish so much I had done that in the first year more (and even now) but I still worry, worry, worry. I will say that on our first clinic visit our CF doc said that even though the life expectancy is 36 now, those people were born in 1970. Our little guys are born in the 2000s so we can expect much longer lives for them. That has really stuck with me, especially when I am having a bad day. Welcome!

Zoe
mom to Kate

 

[zoeg]

Hi Rebecca!

Great topic! I feel so much in the same boat as you. I have a 13 month old with CF and some days are great, others I am a nervous wreck driving my family crazy. Most days are good, and as Liza said it does become so routine. I agree with her as well to enjoy your child! I wish so much I had done that in the first year more (and even now) but I still worry, worry, worry. I will say that on our first clinic visit our CF doc said that even though the life expectancy is 36 now, those people were born in 1970. Our little guys are born in the 2000s so we can expect much longer lives for them. That has really stuck with me, especially when I am having a bad day. Welcome!

Zoe
mom to Kate

 

[Keirasmom]

Hi..
I hope everyone has a great Turkey day tomorrow. I have a question for the moms with little one's. After you found out about CF, did you talk with your spouse about not having anymore children?
Just wondering what some other families decided.
Thanks,
Rebecca

 

[Keirasmom]

Hi..
I hope everyone has a great Turkey day tomorrow. I have a question for the moms with little one's. After you found out about CF, did you talk with your spouse about not having anymore children?
Just wondering what some other families decided.
Thanks,
Rebecca

 

[Keirasmom]

Hi..
I hope everyone has a great Turkey day tomorrow. I have a question for the moms with little one's. After you found out about CF, did you talk with your spouse about not having anymore children?
Just wondering what some other families decided.
Thanks,
Rebecca

 

[Mommafirst]

Well, we were done before we found out about the CF. BUT we have discussed that if we weren't sure we were done before, we KNOW we are done now. For us the risk of another CF child would have been too hard to take. I know there are plenty of people on this site that have gone on to have other children, and I don't think there is anything wrong with that -- you just have to know what you can handle. Babies are blessings regardless!!

 

[Mommafirst]

Well, we were done before we found out about the CF. BUT we have discussed that if we weren't sure we were done before, we KNOW we are done now. For us the risk of another CF child would have been too hard to take. I know there are plenty of people on this site that have gone on to have other children, and I don't think there is anything wrong with that -- you just have to know what you can handle. Babies are blessings regardless!!

 

[Mommafirst]

Well, we were done before we found out about the CF. BUT we have discussed that if we weren't sure we were done before, we KNOW we are done now. For us the risk of another CF child would have been too hard to take. I know there are plenty of people on this site that have gone on to have other children, and I don't think there is anything wrong with that -- you just have to know what you can handle. Babies are blessings regardless!!

 

[mneville]

Rebecca- After our firstborn was diagnosed, we decided that we would not take the 1/4 chance for another child with CF. We did decide to try the IVF/PGD route and are currently 10 weeks pregnant with our second child. It is not 100% accurate but much better than the 25% risk we would have been dealing with.

Megan, mom to Aidan

 

[mneville]

Rebecca- After our firstborn was diagnosed, we decided that we would not take the 1/4 chance for another child with CF. We did decide to try the IVF/PGD route and are currently 10 weeks pregnant with our second child. It is not 100% accurate but much better than the 25% risk we would have been dealing with.

Megan, mom to Aidan

 

[mneville]

Rebecca- After our firstborn was diagnosed, we decided that we would not take the 1/4 chance for another child with CF. We did decide to try the IVF/PGD route and are currently 10 weeks pregnant with our second child. It is not 100% accurate but much better than the 25% risk we would have been dealing with.

Megan, mom to Aidan

 

[johnsmum]

hi, i think we as parents have to keep life as normal as possible. I think that the kids are going to take on our attitude towards their condition, so sometimes we have to put a face on things. Since i found out my son has cf i truly feel my heart has been broken and i honestly could not risk having another child and going through it all again i don't think it would be fair to the family i have or to the child i would be bringing into the world x

 

[johnsmum]

hi, i think we as parents have to keep life as normal as possible. I think that the kids are going to take on our attitude towards their condition, so sometimes we have to put a face on things. Since i found out my son has cf i truly feel my heart has been broken and i honestly could not risk having another child and going through it all again i don't think it would be fair to the family i have or to the child i would be bringing into the world x

 

[johnsmum]

hi, i think we as parents have to keep life as normal as possible. I think that the kids are going to take on our attitude towards their condition, so sometimes we have to put a face on things. Since i found out my son has cf i truly feel my heart has been broken and i honestly could not risk having another child and going through it all again i don't think it would be fair to the family i have or to the child i would be bringing into the world x

 

[ktsmom]

Welcome Keirasmom! We were also already done with having kids before the CF diagnosis, but if we hadn't been, the CF diagnosis certainly would have sealed the deal for us.

I am sorry that you were told your daughter has a 'severe' form of CF. I wasted hours and lots of emotional energy after our diagnosis trying to find stories of those with the exact symptoms and mutations, because I wanted to know how severe my daughter's CF was, and what her prognosis was. For all of the reasons other posters have given, I have since moved on to focus on the positive, and the things I CAN control, like adhering to her treatment regimens.

This will be a constant struggle for you, to some degree or another, every single day. But you can do it! Our daughter goes to preschool, feels SO much better now that her digestive issues are being addressed. We curtail activities only when there is a known danger (staying away when we know people are sick, for instance) or when it would interfere too much with treatment. Otherwise we try to be normal!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Welcome Keirasmom! We were also already done with having kids before the CF diagnosis, but if we hadn't been, the CF diagnosis certainly would have sealed the deal for us.

I am sorry that you were told your daughter has a 'severe' form of CF. I wasted hours and lots of emotional energy after our diagnosis trying to find stories of those with the exact symptoms and mutations, because I wanted to know how severe my daughter's CF was, and what her prognosis was. For all of the reasons other posters have given, I have since moved on to focus on the positive, and the things I CAN control, like adhering to her treatment regimens.

This will be a constant struggle for you, to some degree or another, every single day. But you can do it! Our daughter goes to preschool, feels SO much better now that her digestive issues are being addressed. We curtail activities only when there is a known danger (staying away when we know people are sick, for instance) or when it would interfere too much with treatment. Otherwise we try to be normal!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Welcome Keirasmom! We were also already done with having kids before the CF diagnosis, but if we hadn't been, the CF diagnosis certainly would have sealed the deal for us.

I am sorry that you were told your daughter has a 'severe' form of CF. I wasted hours and lots of emotional energy after our diagnosis trying to find stories of those with the exact symptoms and mutations, because I wanted to know how severe my daughter's CF was, and what her prognosis was. For all of the reasons other posters have given, I have since moved on to focus on the positive, and the things I CAN control, like adhering to her treatment regimens.

This will be a constant struggle for you, to some degree or another, every single day. But you can do it! Our daughter goes to preschool, feels SO much better now that her digestive issues are being addressed. We curtail activities only when there is a known danger (staying away when we know people are sick, for instance) or when it would interfere too much with treatment. Otherwise we try to be normal!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)