Prenatal diagnosis for CF

[flipper711]

I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.

If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.

THANK YOU in advance.

 

[flipper711]

I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.

If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.

THANK YOU in advance.

 

[flipper711]

I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.

If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.

THANK YOU in advance.

 

[flipper711]

I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.

If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.

THANK YOU in advance.

 

[flipper711]

I am new to the board. My husband and I just received a prenatal diagnosis for CF. My husband has the DF508 mutation and I have the R347P mutation. We have an appointment with a pediatric pulmonologist next week. I have researched all of the CF sites and read all the "basic" information about the disease. I know there are different severities and I know the websites don't give even a clue to what we can expect on a daily basis.
<br />
<br />If any of you would be so kind as to share your story with us, it would be so greatly appreciated. It would be so helpful to know the severity of your child's case first but then what you go through each day with regard to meds, treatments, drs/specialists, etc. Even things like challenges with school (in the future) or travel or just going out for the day to run errands...how bad is it really?? Please don't fear being very honest. We want to know what to expect...how to prepare our 8 yr old son...how to prepare ourselves for anything or everything.
<br />
<br />THANK YOU in advance.

 

[Gnome]

So let me get this clear you are expecting a child in the near future that may have CF. And you also have a 8 year old son. I am just asking so I understand everything.


If you want to know severity of your mutation you can get a general idea by asking Steven Keyles who has a Forum on this website. Generally CF will take the form of the milder mutation and you don't know what the R347P mutation is he can perhaps shed some light on things.

Generally in the beginning, although the diagnosis is overwealming, in a lot of cases in the first few years, other than pancreastic issues, most of CFers have few problems. However as time goes by things do gets progressively worse. How long until one has problems depends on a number of things including how compliant one is with the treatments. Some people are very compliant and have trouble right from the onset.

 

[Gnome]

So let me get this clear you are expecting a child in the near future that may have CF. And you also have a 8 year old son. I am just asking so I understand everything.


If you want to know severity of your mutation you can get a general idea by asking Steven Keyles who has a Forum on this website. Generally CF will take the form of the milder mutation and you don't know what the R347P mutation is he can perhaps shed some light on things.

Generally in the beginning, although the diagnosis is overwealming, in a lot of cases in the first few years, other than pancreastic issues, most of CFers have few problems. However as time goes by things do gets progressively worse. How long until one has problems depends on a number of things including how compliant one is with the treatments. Some people are very compliant and have trouble right from the onset.

 

[Gnome]

So let me get this clear you are expecting a child in the near future that may have CF. And you also have a 8 year old son. I am just asking so I understand everything.


If you want to know severity of your mutation you can get a general idea by asking Steven Keyles who has a Forum on this website. Generally CF will take the form of the milder mutation and you don't know what the R347P mutation is he can perhaps shed some light on things.

Generally in the beginning, although the diagnosis is overwealming, in a lot of cases in the first few years, other than pancreastic issues, most of CFers have few problems. However as time goes by things do gets progressively worse. How long until one has problems depends on a number of things including how compliant one is with the treatments. Some people are very compliant and have trouble right from the onset.

 

[Gnome]

So let me get this clear you are expecting a child in the near future that may have CF. And you also have a 8 year old son. I am just asking so I understand everything.


If you want to know severity of your mutation you can get a general idea by asking Steven Keyles who has a Forum on this website. Generally CF will take the form of the milder mutation and you don't know what the R347P mutation is he can perhaps shed some light on things.

Generally in the beginning, although the diagnosis is overwealming, in a lot of cases in the first few years, other than pancreastic issues, most of CFers have few problems. However as time goes by things do gets progressively worse. How long until one has problems depends on a number of things including how compliant one is with the treatments. Some people are very compliant and have trouble right from the onset.

 

[Gnome]

So let me get this clear you are expecting a child in the near future that may have CF. And you also have a 8 year old son. I am just asking so I understand everything.
<br />
<br />
<br />If you want to know severity of your mutation you can get a general idea by asking Steven Keyles who has a Forum on this website. Generally CF will take the form of the milder mutation and you don't know what the R347P mutation is he can perhaps shed some light on things.
<br />
<br />Generally in the beginning, although the diagnosis is overwealming, in a lot of cases in the first few years, other than pancreastic issues, most of CFers have few problems. However as time goes by things do gets progressively worse. How long until one has problems depends on a number of things including how compliant one is with the treatments. Some people are very compliant and have trouble right from the onset.

 

[izemmom]

Hello!

First, WELCOME! We are happy you're here. This is a great place to come for support. Secondly, my heart breaks, thinking of what you're feeling right now. It's so overwhelming. My daughter was not diagnosed until about 4 days after birth, but our world went into a tailspin then like yours must have when you got the news. You are not alone.
Third, let me assure you that you will have a beautiful baby whom you will LOVE beyond belief! Eventually, you will have a "normal" life, doing all the things you've done with your 8 year old, just with CF in the mix. Seems impossible right now, I know. It did to me, too. But eventually, the things you have to do become routine...except for the times when the routine is blown out the window, the times of sickness.

There are some diagnosis stories in the diagnosis section of this site. You'll find details of alot of our stories there. For now, I'm going to tell you some of the major ways that our lives shanged after dagnosis.

Prior to CF we rarely visited the doctor...for any of us. Now it's a regular deal. The first two years it felt like we lived in one waiting room or the other. That has settled down for us, and now we have pretty much the quartely clinic visits and a few things in between. That's different for everyone. Emily technically has two class 1 mutations (Df508, R5113x - I think). So, by the numbers she has a severe case...but you'll learn that that really doesn't mean much. There is a HUGE variance in symptoms, degrees of severity, general helath, etc, among people with the same mutations, let alone the hundreds of different mutation combinations that are possible.

We are vigilant about meds and treatments at home. Currently Emily takes about 8 different meds daily, some oral, some inhaled/nebulized, some that we put in her g-tube (more about that lately). We've gotten to this point gradually over 4 years, and it changes from time to time. When she was a tiny baby, yes, it felt overwhelming. Now, it's part of the routine, and it doesn't phase us, her, or her daycare staff, or the occasional babysitter. It's just our life. Emily also uses a vest for airway clearance. Again, part of the routine.

Getting her g-tube at about 18 months was a HUGE decision for us...the hardest thing we've encountered yet. That's one thing about CF...it sure makes you grow and learn and face tough stuff. But, we made the choice the best we could, and we've never regretted it. Even something as big as this hadsn't had a negative impact on Emily's day to day life. SHe's just a normal preschooler. Really.

You asked about daily life, travel, etc... Well, the best I can say is that it's all VERY NORMAL! We are like any other family in our neighborhood or in our kids schools. We're normal. No, it didn't feel that way at first. I thought we'd never be able to do the things we enjoyed again, like camping and going out for dates just the two of us (well, that hasn't happened in years, but not due to CF!!!). But, we do! It's OK, and it's a great life.

I do live with the constant knowledge that things could change tomorrow. One day there will be a clinic vist that ends in a hospital admit instead of coming home. Some day we'll add a new med to the routine, or we'll get a culture result that will send me into despair. I know the other shoe will drop. But for now, we are managing, and Emily is THRIVING. MOre than anything, CF HAS taught me to enjoy each day. To LIVE and be aware of it. There are lots of other positive consequences, too (we both take care of ourselves a little better now. We don't sweat the small stuff. We've gotten closer as a couple...) that I attribute to Emily's dagnosis.

OK. I've gone on long enough. Just rest assured that it's going to be tough at first. You'll find support for those tough days here and from your family, hopefully. Then, in a few years, you'll be able to write a post like this to a "new" family. It's going to be OK.

A few last items:
1. Find the closest accredidted CF center and make an appointment, if you haven;'t done that already.
2. Plan to deliver at a hospital with a high level NICU, just in case. I wish I had been able to do that.
3. There are some kids books out there about CF...although I can't think of anything appropriate for an 8 year old. They are geared for younger kids. You'll want to let him know about some of the things you'll have to do for the baby, (Chest PT, enzymes...) and by all means, make HIM a part of it as early as you can.

OK. I"m really done now.
Please visit often. We're here for you!

 

[izemmom]

Hello!

First, WELCOME! We are happy you're here. This is a great place to come for support. Secondly, my heart breaks, thinking of what you're feeling right now. It's so overwhelming. My daughter was not diagnosed until about 4 days after birth, but our world went into a tailspin then like yours must have when you got the news. You are not alone.
Third, let me assure you that you will have a beautiful baby whom you will LOVE beyond belief! Eventually, you will have a "normal" life, doing all the things you've done with your 8 year old, just with CF in the mix. Seems impossible right now, I know. It did to me, too. But eventually, the things you have to do become routine...except for the times when the routine is blown out the window, the times of sickness.

There are some diagnosis stories in the diagnosis section of this site. You'll find details of alot of our stories there. For now, I'm going to tell you some of the major ways that our lives shanged after dagnosis.

Prior to CF we rarely visited the doctor...for any of us. Now it's a regular deal. The first two years it felt like we lived in one waiting room or the other. That has settled down for us, and now we have pretty much the quartely clinic visits and a few things in between. That's different for everyone. Emily technically has two class 1 mutations (Df508, R5113x - I think). So, by the numbers she has a severe case...but you'll learn that that really doesn't mean much. There is a HUGE variance in symptoms, degrees of severity, general helath, etc, among people with the same mutations, let alone the hundreds of different mutation combinations that are possible.

We are vigilant about meds and treatments at home. Currently Emily takes about 8 different meds daily, some oral, some inhaled/nebulized, some that we put in her g-tube (more about that lately). We've gotten to this point gradually over 4 years, and it changes from time to time. When she was a tiny baby, yes, it felt overwhelming. Now, it's part of the routine, and it doesn't phase us, her, or her daycare staff, or the occasional babysitter. It's just our life. Emily also uses a vest for airway clearance. Again, part of the routine.

Getting her g-tube at about 18 months was a HUGE decision for us...the hardest thing we've encountered yet. That's one thing about CF...it sure makes you grow and learn and face tough stuff. But, we made the choice the best we could, and we've never regretted it. Even something as big as this hadsn't had a negative impact on Emily's day to day life. SHe's just a normal preschooler. Really.

You asked about daily life, travel, etc... Well, the best I can say is that it's all VERY NORMAL! We are like any other family in our neighborhood or in our kids schools. We're normal. No, it didn't feel that way at first. I thought we'd never be able to do the things we enjoyed again, like camping and going out for dates just the two of us (well, that hasn't happened in years, but not due to CF!!!). But, we do! It's OK, and it's a great life.

I do live with the constant knowledge that things could change tomorrow. One day there will be a clinic vist that ends in a hospital admit instead of coming home. Some day we'll add a new med to the routine, or we'll get a culture result that will send me into despair. I know the other shoe will drop. But for now, we are managing, and Emily is THRIVING. MOre than anything, CF HAS taught me to enjoy each day. To LIVE and be aware of it. There are lots of other positive consequences, too (we both take care of ourselves a little better now. We don't sweat the small stuff. We've gotten closer as a couple...) that I attribute to Emily's dagnosis.

OK. I've gone on long enough. Just rest assured that it's going to be tough at first. You'll find support for those tough days here and from your family, hopefully. Then, in a few years, you'll be able to write a post like this to a "new" family. It's going to be OK.

A few last items:
1. Find the closest accredidted CF center and make an appointment, if you haven;'t done that already.
2. Plan to deliver at a hospital with a high level NICU, just in case. I wish I had been able to do that.
3. There are some kids books out there about CF...although I can't think of anything appropriate for an 8 year old. They are geared for younger kids. You'll want to let him know about some of the things you'll have to do for the baby, (Chest PT, enzymes...) and by all means, make HIM a part of it as early as you can.

OK. I"m really done now.
Please visit often. We're here for you!

 

[izemmom]

Hello!

First, WELCOME! We are happy you're here. This is a great place to come for support. Secondly, my heart breaks, thinking of what you're feeling right now. It's so overwhelming. My daughter was not diagnosed until about 4 days after birth, but our world went into a tailspin then like yours must have when you got the news. You are not alone.
Third, let me assure you that you will have a beautiful baby whom you will LOVE beyond belief! Eventually, you will have a "normal" life, doing all the things you've done with your 8 year old, just with CF in the mix. Seems impossible right now, I know. It did to me, too. But eventually, the things you have to do become routine...except for the times when the routine is blown out the window, the times of sickness.

There are some diagnosis stories in the diagnosis section of this site. You'll find details of alot of our stories there. For now, I'm going to tell you some of the major ways that our lives shanged after dagnosis.

Prior to CF we rarely visited the doctor...for any of us. Now it's a regular deal. The first two years it felt like we lived in one waiting room or the other. That has settled down for us, and now we have pretty much the quartely clinic visits and a few things in between. That's different for everyone. Emily technically has two class 1 mutations (Df508, R5113x - I think). So, by the numbers she has a severe case...but you'll learn that that really doesn't mean much. There is a HUGE variance in symptoms, degrees of severity, general helath, etc, among people with the same mutations, let alone the hundreds of different mutation combinations that are possible.

We are vigilant about meds and treatments at home. Currently Emily takes about 8 different meds daily, some oral, some inhaled/nebulized, some that we put in her g-tube (more about that lately). We've gotten to this point gradually over 4 years, and it changes from time to time. When she was a tiny baby, yes, it felt overwhelming. Now, it's part of the routine, and it doesn't phase us, her, or her daycare staff, or the occasional babysitter. It's just our life. Emily also uses a vest for airway clearance. Again, part of the routine.

Getting her g-tube at about 18 months was a HUGE decision for us...the hardest thing we've encountered yet. That's one thing about CF...it sure makes you grow and learn and face tough stuff. But, we made the choice the best we could, and we've never regretted it. Even something as big as this hadsn't had a negative impact on Emily's day to day life. SHe's just a normal preschooler. Really.

You asked about daily life, travel, etc... Well, the best I can say is that it's all VERY NORMAL! We are like any other family in our neighborhood or in our kids schools. We're normal. No, it didn't feel that way at first. I thought we'd never be able to do the things we enjoyed again, like camping and going out for dates just the two of us (well, that hasn't happened in years, but not due to CF!!!). But, we do! It's OK, and it's a great life.

I do live with the constant knowledge that things could change tomorrow. One day there will be a clinic vist that ends in a hospital admit instead of coming home. Some day we'll add a new med to the routine, or we'll get a culture result that will send me into despair. I know the other shoe will drop. But for now, we are managing, and Emily is THRIVING. MOre than anything, CF HAS taught me to enjoy each day. To LIVE and be aware of it. There are lots of other positive consequences, too (we both take care of ourselves a little better now. We don't sweat the small stuff. We've gotten closer as a couple...) that I attribute to Emily's dagnosis.

OK. I've gone on long enough. Just rest assured that it's going to be tough at first. You'll find support for those tough days here and from your family, hopefully. Then, in a few years, you'll be able to write a post like this to a "new" family. It's going to be OK.

A few last items:
1. Find the closest accredidted CF center and make an appointment, if you haven;'t done that already.
2. Plan to deliver at a hospital with a high level NICU, just in case. I wish I had been able to do that.
3. There are some kids books out there about CF...although I can't think of anything appropriate for an 8 year old. They are geared for younger kids. You'll want to let him know about some of the things you'll have to do for the baby, (Chest PT, enzymes...) and by all means, make HIM a part of it as early as you can.

OK. I"m really done now.
Please visit often. We're here for you!

 

[izemmom]

Hello!

First, WELCOME! We are happy you're here. This is a great place to come for support. Secondly, my heart breaks, thinking of what you're feeling right now. It's so overwhelming. My daughter was not diagnosed until about 4 days after birth, but our world went into a tailspin then like yours must have when you got the news. You are not alone.
Third, let me assure you that you will have a beautiful baby whom you will LOVE beyond belief! Eventually, you will have a "normal" life, doing all the things you've done with your 8 year old, just with CF in the mix. Seems impossible right now, I know. It did to me, too. But eventually, the things you have to do become routine...except for the times when the routine is blown out the window, the times of sickness.

There are some diagnosis stories in the diagnosis section of this site. You'll find details of alot of our stories there. For now, I'm going to tell you some of the major ways that our lives shanged after dagnosis.

Prior to CF we rarely visited the doctor...for any of us. Now it's a regular deal. The first two years it felt like we lived in one waiting room or the other. That has settled down for us, and now we have pretty much the quartely clinic visits and a few things in between. That's different for everyone. Emily technically has two class 1 mutations (Df508, R5113x - I think). So, by the numbers she has a severe case...but you'll learn that that really doesn't mean much. There is a HUGE variance in symptoms, degrees of severity, general helath, etc, among people with the same mutations, let alone the hundreds of different mutation combinations that are possible.

We are vigilant about meds and treatments at home. Currently Emily takes about 8 different meds daily, some oral, some inhaled/nebulized, some that we put in her g-tube (more about that lately). We've gotten to this point gradually over 4 years, and it changes from time to time. When she was a tiny baby, yes, it felt overwhelming. Now, it's part of the routine, and it doesn't phase us, her, or her daycare staff, or the occasional babysitter. It's just our life. Emily also uses a vest for airway clearance. Again, part of the routine.

Getting her g-tube at about 18 months was a HUGE decision for us...the hardest thing we've encountered yet. That's one thing about CF...it sure makes you grow and learn and face tough stuff. But, we made the choice the best we could, and we've never regretted it. Even something as big as this hadsn't had a negative impact on Emily's day to day life. SHe's just a normal preschooler. Really.

You asked about daily life, travel, etc... Well, the best I can say is that it's all VERY NORMAL! We are like any other family in our neighborhood or in our kids schools. We're normal. No, it didn't feel that way at first. I thought we'd never be able to do the things we enjoyed again, like camping and going out for dates just the two of us (well, that hasn't happened in years, but not due to CF!!!). But, we do! It's OK, and it's a great life.

I do live with the constant knowledge that things could change tomorrow. One day there will be a clinic vist that ends in a hospital admit instead of coming home. Some day we'll add a new med to the routine, or we'll get a culture result that will send me into despair. I know the other shoe will drop. But for now, we are managing, and Emily is THRIVING. MOre than anything, CF HAS taught me to enjoy each day. To LIVE and be aware of it. There are lots of other positive consequences, too (we both take care of ourselves a little better now. We don't sweat the small stuff. We've gotten closer as a couple...) that I attribute to Emily's dagnosis.

OK. I've gone on long enough. Just rest assured that it's going to be tough at first. You'll find support for those tough days here and from your family, hopefully. Then, in a few years, you'll be able to write a post like this to a "new" family. It's going to be OK.

A few last items:
1. Find the closest accredidted CF center and make an appointment, if you haven;'t done that already.
2. Plan to deliver at a hospital with a high level NICU, just in case. I wish I had been able to do that.
3. There are some kids books out there about CF...although I can't think of anything appropriate for an 8 year old. They are geared for younger kids. You'll want to let him know about some of the things you'll have to do for the baby, (Chest PT, enzymes...) and by all means, make HIM a part of it as early as you can.

OK. I"m really done now.
Please visit often. We're here for you!

 

[izemmom]

Hello!
<br />
<br />First, WELCOME! We are happy you're here. This is a great place to come for support. Secondly, my heart breaks, thinking of what you're feeling right now. It's so overwhelming. My daughter was not diagnosed until about 4 days after birth, but our world went into a tailspin then like yours must have when you got the news. You are not alone.
<br />Third, let me assure you that you will have a beautiful baby whom you will LOVE beyond belief! Eventually, you will have a "normal" life, doing all the things you've done with your 8 year old, just with CF in the mix. Seems impossible right now, I know. It did to me, too. But eventually, the things you have to do become routine...except for the times when the routine is blown out the window, the times of sickness.
<br />
<br />There are some diagnosis stories in the diagnosis section of this site. You'll find details of alot of our stories there. For now, I'm going to tell you some of the major ways that our lives shanged after dagnosis.
<br />
<br />Prior to CF we rarely visited the doctor...for any of us. Now it's a regular deal. The first two years it felt like we lived in one waiting room or the other. That has settled down for us, and now we have pretty much the quartely clinic visits and a few things in between. That's different for everyone. Emily technically has two class 1 mutations (Df508, R5113x - I think). So, by the numbers she has a severe case...but you'll learn that that really doesn't mean much. There is a HUGE variance in symptoms, degrees of severity, general helath, etc, among people with the same mutations, let alone the hundreds of different mutation combinations that are possible.
<br />
<br />We are vigilant about meds and treatments at home. Currently Emily takes about 8 different meds daily, some oral, some inhaled/nebulized, some that we put in her g-tube (more about that lately). We've gotten to this point gradually over 4 years, and it changes from time to time. When she was a tiny baby, yes, it felt overwhelming. Now, it's part of the routine, and it doesn't phase us, her, or her daycare staff, or the occasional babysitter. It's just our life. Emily also uses a vest for airway clearance. Again, part of the routine.
<br />
<br />Getting her g-tube at about 18 months was a HUGE decision for us...the hardest thing we've encountered yet. That's one thing about CF...it sure makes you grow and learn and face tough stuff. But, we made the choice the best we could, and we've never regretted it. Even something as big as this hadsn't had a negative impact on Emily's day to day life. SHe's just a normal preschooler. Really.
<br />
<br />You asked about daily life, travel, etc... Well, the best I can say is that it's all VERY NORMAL! We are like any other family in our neighborhood or in our kids schools. We're normal. No, it didn't feel that way at first. I thought we'd never be able to do the things we enjoyed again, like camping and going out for dates just the two of us (well, that hasn't happened in years, but not due to CF!!!). But, we do! It's OK, and it's a great life.
<br />
<br />I do live with the constant knowledge that things could change tomorrow. One day there will be a clinic vist that ends in a hospital admit instead of coming home. Some day we'll add a new med to the routine, or we'll get a culture result that will send me into despair. I know the other shoe will drop. But for now, we are managing, and Emily is THRIVING. MOre than anything, CF HAS taught me to enjoy each day. To LIVE and be aware of it. There are lots of other positive consequences, too (we both take care of ourselves a little better now. We don't sweat the small stuff. We've gotten closer as a couple...) that I attribute to Emily's dagnosis.
<br />
<br />OK. I've gone on long enough. Just rest assured that it's going to be tough at first. You'll find support for those tough days here and from your family, hopefully. Then, in a few years, you'll be able to write a post like this to a "new" family. It's going to be OK.
<br />
<br />A few last items:
<br />1. Find the closest accredidted CF center and make an appointment, if you haven;'t done that already.
<br />2. Plan to deliver at a hospital with a high level NICU, just in case. I wish I had been able to do that.
<br />3. There are some kids books out there about CF...although I can't think of anything appropriate for an 8 year old. They are geared for younger kids. You'll want to let him know about some of the things you'll have to do for the baby, (Chest PT, enzymes...) and by all means, make HIM a part of it as early as you can.
<br />
<br />OK. I"m really done now.
<br />Please visit often. We're here for you!

 

[dlo2977]

I cannot imagine how difficult it must be for you to know your baby will be born with CF. We haven't been down this road for very long as my 3 year old was diagnosed 6 months ago due to pulmonary insufficiency. As of right now, she doesn't have any pulmonary symptoms. Our days are actually really easy! She does have to take enzymes ( a pill with small beads of medicine that we open up and put into a spoonful for applesauce or chocolate syrup) with every meal (except fruit, juice and stuff like gummies). It is kind of a pain because they can only eat for about an hour after the pill so you do have to remember to give the pill before any snack or meal. It is a slight inconvenience when you are out, but no big deal. My daughter takes the medicine with no problem. Since she doesn't have any respiratory problems yet, we want to keep it that way. She does the airway clearance vest for 20 minutes daily when she is well and 20 minutes 3 times a day when she is sick. She gets to watch whatever movie she wants on the laptop when she does it, so she will actually ask to do it sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do also give her a nebulizer with albuterol when she is sick with a cough. So, really, it doesn't interfere with every day life too much.

I guess a lot of it depends on how severe your baby's case is. I think your mutation is a more mild one, so that is great news! Plus, there are a few drugs in clinical trials that are aimed to help the faulty protein that causes CF symptoms to function properly. If these drugs work as they are supposed to, this may be a HUGE breakthrough!

I'm not trying to say it is easy. I had a couple really dark weeks after her diagnosis and sometimes thinking about CF and the unknowns is unbearable for me. But, you will get used to it as a part of life and won't think about it every day.

 

[dlo2977]

I cannot imagine how difficult it must be for you to know your baby will be born with CF. We haven't been down this road for very long as my 3 year old was diagnosed 6 months ago due to pulmonary insufficiency. As of right now, she doesn't have any pulmonary symptoms. Our days are actually really easy! She does have to take enzymes ( a pill with small beads of medicine that we open up and put into a spoonful for applesauce or chocolate syrup) with every meal (except fruit, juice and stuff like gummies). It is kind of a pain because they can only eat for about an hour after the pill so you do have to remember to give the pill before any snack or meal. It is a slight inconvenience when you are out, but no big deal. My daughter takes the medicine with no problem. Since she doesn't have any respiratory problems yet, we want to keep it that way. She does the airway clearance vest for 20 minutes daily when she is well and 20 minutes 3 times a day when she is sick. She gets to watch whatever movie she wants on the laptop when she does it, so she will actually ask to do it sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do also give her a nebulizer with albuterol when she is sick with a cough. So, really, it doesn't interfere with every day life too much.

I guess a lot of it depends on how severe your baby's case is. I think your mutation is a more mild one, so that is great news! Plus, there are a few drugs in clinical trials that are aimed to help the faulty protein that causes CF symptoms to function properly. If these drugs work as they are supposed to, this may be a HUGE breakthrough!

I'm not trying to say it is easy. I had a couple really dark weeks after her diagnosis and sometimes thinking about CF and the unknowns is unbearable for me. But, you will get used to it as a part of life and won't think about it every day.

 

[dlo2977]

I cannot imagine how difficult it must be for you to know your baby will be born with CF. We haven't been down this road for very long as my 3 year old was diagnosed 6 months ago due to pulmonary insufficiency. As of right now, she doesn't have any pulmonary symptoms. Our days are actually really easy! She does have to take enzymes ( a pill with small beads of medicine that we open up and put into a spoonful for applesauce or chocolate syrup) with every meal (except fruit, juice and stuff like gummies). It is kind of a pain because they can only eat for about an hour after the pill so you do have to remember to give the pill before any snack or meal. It is a slight inconvenience when you are out, but no big deal. My daughter takes the medicine with no problem. Since she doesn't have any respiratory problems yet, we want to keep it that way. She does the airway clearance vest for 20 minutes daily when she is well and 20 minutes 3 times a day when she is sick. She gets to watch whatever movie she wants on the laptop when she does it, so she will actually ask to do it sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do also give her a nebulizer with albuterol when she is sick with a cough. So, really, it doesn't interfere with every day life too much.

I guess a lot of it depends on how severe your baby's case is. I think your mutation is a more mild one, so that is great news! Plus, there are a few drugs in clinical trials that are aimed to help the faulty protein that causes CF symptoms to function properly. If these drugs work as they are supposed to, this may be a HUGE breakthrough!

I'm not trying to say it is easy. I had a couple really dark weeks after her diagnosis and sometimes thinking about CF and the unknowns is unbearable for me. But, you will get used to it as a part of life and won't think about it every day.

 

[dlo2977]

I cannot imagine how difficult it must be for you to know your baby will be born with CF. We haven't been down this road for very long as my 3 year old was diagnosed 6 months ago due to pulmonary insufficiency. As of right now, she doesn't have any pulmonary symptoms. Our days are actually really easy! She does have to take enzymes ( a pill with small beads of medicine that we open up and put into a spoonful for applesauce or chocolate syrup) with every meal (except fruit, juice and stuff like gummies). It is kind of a pain because they can only eat for about an hour after the pill so you do have to remember to give the pill before any snack or meal. It is a slight inconvenience when you are out, but no big deal. My daughter takes the medicine with no problem. Since she doesn't have any respiratory problems yet, we want to keep it that way. She does the airway clearance vest for 20 minutes daily when she is well and 20 minutes 3 times a day when she is sick. She gets to watch whatever movie she wants on the laptop when she does it, so she will actually ask to do it sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do also give her a nebulizer with albuterol when she is sick with a cough. So, really, it doesn't interfere with every day life too much.

I guess a lot of it depends on how severe your baby's case is. I think your mutation is a more mild one, so that is great news! Plus, there are a few drugs in clinical trials that are aimed to help the faulty protein that causes CF symptoms to function properly. If these drugs work as they are supposed to, this may be a HUGE breakthrough!

I'm not trying to say it is easy. I had a couple really dark weeks after her diagnosis and sometimes thinking about CF and the unknowns is unbearable for me. But, you will get used to it as a part of life and won't think about it every day.

 

[dlo2977]

I cannot imagine how difficult it must be for you to know your baby will be born with CF. We haven't been down this road for very long as my 3 year old was diagnosed 6 months ago due to pulmonary insufficiency. As of right now, she doesn't have any pulmonary symptoms. Our days are actually really easy! She does have to take enzymes ( a pill with small beads of medicine that we open up and put into a spoonful for applesauce or chocolate syrup) with every meal (except fruit, juice and stuff like gummies). It is kind of a pain because they can only eat for about an hour after the pill so you do have to remember to give the pill before any snack or meal. It is a slight inconvenience when you are out, but no big deal. My daughter takes the medicine with no problem. Since she doesn't have any respiratory problems yet, we want to keep it that way. She does the airway clearance vest for 20 minutes daily when she is well and 20 minutes 3 times a day when she is sick. She gets to watch whatever movie she wants on the laptop when she does it, so she will actually ask to do it sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0"> We do also give her a nebulizer with albuterol when she is sick with a cough. So, really, it doesn't interfere with every day life too much.
<br />
<br />I guess a lot of it depends on how severe your baby's case is. I think your mutation is a more mild one, so that is great news! Plus, there are a few drugs in clinical trials that are aimed to help the faulty protein that causes CF symptoms to function properly. If these drugs work as they are supposed to, this may be a HUGE breakthrough!
<br />
<br />I'm not trying to say it is easy. I had a couple really dark weeks after her diagnosis and sometimes thinking about CF and the unknowns is unbearable for me. But, you will get used to it as a part of life and won't think about it every day.