new mom

[babybear]

So I think I'm finally coming out of my "denial" about my 9 month old daughter having CF...so I thought I would introduce myself and my situation.
We found out she had CF after a newborn screen showed one mutation, then went through 2 sweat tests and genetic testing to determine the other mutation. She has had 4 chest x-rays all showing nothing too significant, a little inflammation on her left side in one area that doesn't seem to go away. The only preventive thing we do currently is CPT twice daily which is a peice of cake thus far but of course when she gets a cold then we increase to at least 3 times a day. No GI issues yet but I'm always paranoid about her BM's or eating and thinking she's developing pancreatic insufficiency symptoms. Anyway, of course it took some getting used to this idea of a life with a child with CF...All I know of CF people are those who have died. In grade school, I was good friends with a girl who died when she was in her very early 20's, then recently I worked with a young man who just died in his late teens. So of course this all freaks me out and I look at my beatiful little baby and wonder how long she'll live or when is she going to be hospitalized and how bad it's going to get and I know that I shouldn't focus on all the potential bad outcomes but I do. I just don't know how one could ever get over the death of their child!! When I first found out, I immediately wanted to get pregnant again (totally disregarding the potential of having another child with CF) almost to replace my daughter if she died...I'm over that now, thank goodness!! But I do want other children but don't think we will because of the risks involved...this makes me so sad because I always wanted many children. So anyway, that's a brief introduction to my story...I'm at this point now where I feel like I'm just waiting for something bad to happen to my baby and it's a terrible feeling but I keep remembering all the things I read when I first found out about how most people with CF have GI issues, and all the medications and hospitalizations etc...and then finally today I take some time to look online for support etc and read about people with someone with CF in their lives and of course I look at the "remembered" section and look at the ages in which people passed and it just really saddens me. I'm sorry, I have no real objective in writing this...just seem to be free flowing thoughts. Anyway, I would like to hear how you all have coped with the threat of death and your child/ren with CF...thank you

 

[babybear]

So I think I'm finally coming out of my "denial" about my 9 month old daughter having CF...so I thought I would introduce myself and my situation.
We found out she had CF after a newborn screen showed one mutation, then went through 2 sweat tests and genetic testing to determine the other mutation. She has had 4 chest x-rays all showing nothing too significant, a little inflammation on her left side in one area that doesn't seem to go away. The only preventive thing we do currently is CPT twice daily which is a peice of cake thus far but of course when she gets a cold then we increase to at least 3 times a day. No GI issues yet but I'm always paranoid about her BM's or eating and thinking she's developing pancreatic insufficiency symptoms. Anyway, of course it took some getting used to this idea of a life with a child with CF...All I know of CF people are those who have died. In grade school, I was good friends with a girl who died when she was in her very early 20's, then recently I worked with a young man who just died in his late teens. So of course this all freaks me out and I look at my beatiful little baby and wonder how long she'll live or when is she going to be hospitalized and how bad it's going to get and I know that I shouldn't focus on all the potential bad outcomes but I do. I just don't know how one could ever get over the death of their child!! When I first found out, I immediately wanted to get pregnant again (totally disregarding the potential of having another child with CF) almost to replace my daughter if she died...I'm over that now, thank goodness!! But I do want other children but don't think we will because of the risks involved...this makes me so sad because I always wanted many children. So anyway, that's a brief introduction to my story...I'm at this point now where I feel like I'm just waiting for something bad to happen to my baby and it's a terrible feeling but I keep remembering all the things I read when I first found out about how most people with CF have GI issues, and all the medications and hospitalizations etc...and then finally today I take some time to look online for support etc and read about people with someone with CF in their lives and of course I look at the "remembered" section and look at the ages in which people passed and it just really saddens me. I'm sorry, I have no real objective in writing this...just seem to be free flowing thoughts. Anyway, I would like to hear how you all have coped with the threat of death and your child/ren with CF...thank you

 

[babybear]

So I think I'm finally coming out of my "denial" about my 9 month old daughter having CF...so I thought I would introduce myself and my situation.
We found out she had CF after a newborn screen showed one mutation, then went through 2 sweat tests and genetic testing to determine the other mutation. She has had 4 chest x-rays all showing nothing too significant, a little inflammation on her left side in one area that doesn't seem to go away. The only preventive thing we do currently is CPT twice daily which is a peice of cake thus far but of course when she gets a cold then we increase to at least 3 times a day. No GI issues yet but I'm always paranoid about her BM's or eating and thinking she's developing pancreatic insufficiency symptoms. Anyway, of course it took some getting used to this idea of a life with a child with CF...All I know of CF people are those who have died. In grade school, I was good friends with a girl who died when she was in her very early 20's, then recently I worked with a young man who just died in his late teens. So of course this all freaks me out and I look at my beatiful little baby and wonder how long she'll live or when is she going to be hospitalized and how bad it's going to get and I know that I shouldn't focus on all the potential bad outcomes but I do. I just don't know how one could ever get over the death of their child!! When I first found out, I immediately wanted to get pregnant again (totally disregarding the potential of having another child with CF) almost to replace my daughter if she died...I'm over that now, thank goodness!! But I do want other children but don't think we will because of the risks involved...this makes me so sad because I always wanted many children. So anyway, that's a brief introduction to my story...I'm at this point now where I feel like I'm just waiting for something bad to happen to my baby and it's a terrible feeling but I keep remembering all the things I read when I first found out about how most people with CF have GI issues, and all the medications and hospitalizations etc...and then finally today I take some time to look online for support etc and read about people with someone with CF in their lives and of course I look at the "remembered" section and look at the ages in which people passed and it just really saddens me. I'm sorry, I have no real objective in writing this...just seem to be free flowing thoughts. Anyway, I would like to hear how you all have coped with the threat of death and your child/ren with CF...thank you

 

[JazzysMom]

First of all welcome to the site. I am glad you got over the impulse to have another child to "replace" your daughter when she passes. It means you have moved to a better place mentally. Its devistating. No question about that and then knowing people personally who have died young or looking at the remembering section its a constant reminder that the average age is still quite young. That being said....I will start with the usual lecture of your daughter is "fortunate" to be born now adays because of the improvements in care blah, blah, blah. That being said....compliance, environement, attitude and luck are the contributing factors to a longer life for her. That being said.....enjoy your daughter and do your best. That is all you can do!!!!!!!!!!

 

[JazzysMom]

First of all welcome to the site. I am glad you got over the impulse to have another child to "replace" your daughter when she passes. It means you have moved to a better place mentally. Its devistating. No question about that and then knowing people personally who have died young or looking at the remembering section its a constant reminder that the average age is still quite young. That being said....I will start with the usual lecture of your daughter is "fortunate" to be born now adays because of the improvements in care blah, blah, blah. That being said....compliance, environement, attitude and luck are the contributing factors to a longer life for her. That being said.....enjoy your daughter and do your best. That is all you can do!!!!!!!!!!

 

[JazzysMom]

First of all welcome to the site. I am glad you got over the impulse to have another child to "replace" your daughter when she passes. It means you have moved to a better place mentally. Its devistating. No question about that and then knowing people personally who have died young or looking at the remembering section its a constant reminder that the average age is still quite young. That being said....I will start with the usual lecture of your daughter is "fortunate" to be born now adays because of the improvements in care blah, blah, blah. That being said....compliance, environement, attitude and luck are the contributing factors to a longer life for her. That being said.....enjoy your daughter and do your best. That is all you can do!!!!!!!!!!

 

[Rebjane]

welcome to this site. I have a daughter who is 4 with CF. I went more through an anger phase than denial phase. I was angry at everyone, I thought it had to be somebody's fault my daughter had CF. I try not to dwell on what could have been or what may happen anymore. It's hard. a special gift CF has given our family is enjoying the everyday beauty in life. For example, today my daughter had a Valentine's day party at nursery school today. I felt so happy watching the kids give out valentine's and having a special snack, it was so sweet. Maybe before I had my daughter with CF, I was too busy to slow down and truly enjoy the small moments. Don't get me wrong. I wish my daughter did not have CF. If I could I would switch places with her. But, I don't think about death everyday, I don't think she's going to die anytime soon in fact. We just do our best to keep her healthy the best way we know how and live. When maggie was a baby I was so scared she'ld get sick all the time, of course I still worry. Maggie has gotten sick, sick enough to need IV's and interventions. She's pulled though and we feel blessed.

 

[Rebjane]

welcome to this site. I have a daughter who is 4 with CF. I went more through an anger phase than denial phase. I was angry at everyone, I thought it had to be somebody's fault my daughter had CF. I try not to dwell on what could have been or what may happen anymore. It's hard. a special gift CF has given our family is enjoying the everyday beauty in life. For example, today my daughter had a Valentine's day party at nursery school today. I felt so happy watching the kids give out valentine's and having a special snack, it was so sweet. Maybe before I had my daughter with CF, I was too busy to slow down and truly enjoy the small moments. Don't get me wrong. I wish my daughter did not have CF. If I could I would switch places with her. But, I don't think about death everyday, I don't think she's going to die anytime soon in fact. We just do our best to keep her healthy the best way we know how and live. When maggie was a baby I was so scared she'ld get sick all the time, of course I still worry. Maggie has gotten sick, sick enough to need IV's and interventions. She's pulled though and we feel blessed.

 

[Rebjane]

welcome to this site. I have a daughter who is 4 with CF. I went more through an anger phase than denial phase. I was angry at everyone, I thought it had to be somebody's fault my daughter had CF. I try not to dwell on what could have been or what may happen anymore. It's hard. a special gift CF has given our family is enjoying the everyday beauty in life. For example, today my daughter had a Valentine's day party at nursery school today. I felt so happy watching the kids give out valentine's and having a special snack, it was so sweet. Maybe before I had my daughter with CF, I was too busy to slow down and truly enjoy the small moments. Don't get me wrong. I wish my daughter did not have CF. If I could I would switch places with her. But, I don't think about death everyday, I don't think she's going to die anytime soon in fact. We just do our best to keep her healthy the best way we know how and live. When maggie was a baby I was so scared she'ld get sick all the time, of course I still worry. Maggie has gotten sick, sick enough to need IV's and interventions. She's pulled though and we feel blessed.

 

[mneville]

Sorry about your diagnosis. Our son Aidan was disgnosed through newborn screening as well. He is two and a half now and doing great! He is very healthy and growing awesome despite severe pancreatic insufficiency. He is 36 pounds!

We also were so upset at having no more children. We looked into adoption but it is so expensive! So we did a procedure involving IVF. We used something called PGD with IVF. Only CF free embryos (it all works right) are transferred back to the mother. I am currently pregnant with a second boy who should not have CF. Just something to think about...

I used to dwell on the death thing- not anymore. My kid is way too full of life!!

Megan

 

[mneville]

Sorry about your diagnosis. Our son Aidan was disgnosed through newborn screening as well. He is two and a half now and doing great! He is very healthy and growing awesome despite severe pancreatic insufficiency. He is 36 pounds!

We also were so upset at having no more children. We looked into adoption but it is so expensive! So we did a procedure involving IVF. We used something called PGD with IVF. Only CF free embryos (it all works right) are transferred back to the mother. I am currently pregnant with a second boy who should not have CF. Just something to think about...

I used to dwell on the death thing- not anymore. My kid is way too full of life!!

Megan

 

[mneville]

Sorry about your diagnosis. Our son Aidan was disgnosed through newborn screening as well. He is two and a half now and doing great! He is very healthy and growing awesome despite severe pancreatic insufficiency. He is 36 pounds!

We also were so upset at having no more children. We looked into adoption but it is so expensive! So we did a procedure involving IVF. We used something called PGD with IVF. Only CF free embryos (it all works right) are transferred back to the mother. I am currently pregnant with a second boy who should not have CF. Just something to think about...

I used to dwell on the death thing- not anymore. My kid is way too full of life!!

Megan

 

[Mommafirst]

Welcome!<br>
<br>
My 12 month old daughter was diagnosed at 6 months after a ton of testing since she was born with meconium illeus. Even though she had the MI at birth, she has had no other digestive issues and only takes enzymes as a precaution (pancreatic sufficient CFers have a higher rate of pancreatitis). While she had a several week bout with a respiratory illness last fall, she shows totally clear x-rays and the docs don't necessarily think it was a CF flareup.
<br>
<br>
I totally understand where you are in the process of grieving over this diagnosis. Although my daughter is a few months older than yours, we were probably diagnosed pretty much around the same time. Some days the words "Cystic Fibrosis" echo in my ears. I have become relatively stoic and detail oriented for the most part, but some days I just start bawling. I think about college and whether or not she will get to go away to college, I think about death and I think about the limitations that will be placed on her as this stupid CF progresses. I also try to think of all the good things that could come out in the next 20 years and all the progress that has been made already.<br>
<br>
I guess I don't have a lot to say, just more rambling. But I did want you to know you are not alone -- your thoughts and feelings are so totally valid, and you are welcome to share them here and ask your questions.\

 

[Mommafirst]

Welcome!<br>
<br>
My 12 month old daughter was diagnosed at 6 months after a ton of testing since she was born with meconium illeus. Even though she had the MI at birth, she has had no other digestive issues and only takes enzymes as a precaution (pancreatic sufficient CFers have a higher rate of pancreatitis). While she had a several week bout with a respiratory illness last fall, she shows totally clear x-rays and the docs don't necessarily think it was a CF flareup.
<br>
<br>
I totally understand where you are in the process of grieving over this diagnosis. Although my daughter is a few months older than yours, we were probably diagnosed pretty much around the same time. Some days the words "Cystic Fibrosis" echo in my ears. I have become relatively stoic and detail oriented for the most part, but some days I just start bawling. I think about college and whether or not she will get to go away to college, I think about death and I think about the limitations that will be placed on her as this stupid CF progresses. I also try to think of all the good things that could come out in the next 20 years and all the progress that has been made already.<br>
<br>
I guess I don't have a lot to say, just more rambling. But I did want you to know you are not alone -- your thoughts and feelings are so totally valid, and you are welcome to share them here and ask your questions.\

 

[Mommafirst]

Welcome!<br>
<br>
My 12 month old daughter was diagnosed at 6 months after a ton of testing since she was born with meconium illeus. Even though she had the MI at birth, she has had no other digestive issues and only takes enzymes as a precaution (pancreatic sufficient CFers have a higher rate of pancreatitis). While she had a several week bout with a respiratory illness last fall, she shows totally clear x-rays and the docs don't necessarily think it was a CF flareup.
<br>
<br>
I totally understand where you are in the process of grieving over this diagnosis. Although my daughter is a few months older than yours, we were probably diagnosed pretty much around the same time. Some days the words "Cystic Fibrosis" echo in my ears. I have become relatively stoic and detail oriented for the most part, but some days I just start bawling. I think about college and whether or not she will get to go away to college, I think about death and I think about the limitations that will be placed on her as this stupid CF progresses. I also try to think of all the good things that could come out in the next 20 years and all the progress that has been made already.<br>
<br>
I guess I don't have a lot to say, just more rambling. But I did want you to know you are not alone -- your thoughts and feelings are so totally valid, and you are welcome to share them here and ask your questions.\

 

[welshwitch]

Hi! Welcome to the site!

I'm a 27 year old woman with CF, and I must say congrats for embracing your daughter and this disease. I think my parents went through a similar stage when they found out I had CF (when I was 9 months old). A word to you, and I am speaking strictly from my experience:

It's tough having CF, but the hardest part is the mental and not the physical. I have a "mild" case (never been hospitalized, take minimal medication, am rarely sick, etc.) and live a fairly normal life. That said, the toughest part is dealing with the negative stigma attached to it!

Anyways, just know that for me it was harder for my parents than me! Life is good, and my boyfriend and all my friends say I'm one of the happiest and most positive people they know! I know I am! And I know I'm not going anywhere anytime soon! <img src="i/expressions/face-icon-small-smile.gif" border="0">

--welshwitch

 

[welshwitch]

Hi! Welcome to the site!

I'm a 27 year old woman with CF, and I must say congrats for embracing your daughter and this disease. I think my parents went through a similar stage when they found out I had CF (when I was 9 months old). A word to you, and I am speaking strictly from my experience:

It's tough having CF, but the hardest part is the mental and not the physical. I have a "mild" case (never been hospitalized, take minimal medication, am rarely sick, etc.) and live a fairly normal life. That said, the toughest part is dealing with the negative stigma attached to it!

Anyways, just know that for me it was harder for my parents than me! Life is good, and my boyfriend and all my friends say I'm one of the happiest and most positive people they know! I know I am! And I know I'm not going anywhere anytime soon! <img src="i/expressions/face-icon-small-smile.gif" border="0">

--welshwitch

 

[welshwitch]

Hi! Welcome to the site!

I'm a 27 year old woman with CF, and I must say congrats for embracing your daughter and this disease. I think my parents went through a similar stage when they found out I had CF (when I was 9 months old). A word to you, and I am speaking strictly from my experience:

It's tough having CF, but the hardest part is the mental and not the physical. I have a "mild" case (never been hospitalized, take minimal medication, am rarely sick, etc.) and live a fairly normal life. That said, the toughest part is dealing with the negative stigma attached to it!

Anyways, just know that for me it was harder for my parents than me! Life is good, and my boyfriend and all my friends say I'm one of the happiest and most positive people they know! I know I am! And I know I'm not going anywhere anytime soon! <img src="i/expressions/face-icon-small-smile.gif" border="0">

--welshwitch

 

[welshwitch]

...and I also want to add that my parents "rolled the dice" and had another baby 4 years after me and were extremely excited that my brother didn't have CF! But I think if he did it would have all been OK, too.

 

[welshwitch]

...and I also want to add that my parents "rolled the dice" and had another baby 4 years after me and were extremely excited that my brother didn't have CF! But I think if he did it would have all been OK, too.