Wife pregnant with second girl....

KennasDaddy · Dec 5, 2008

Well, my wife was pregnant when our first daugher was diagnosed with CF, we are all praying our second daughter hits the other 75% chance and is not positive.

But, if our second child does have CF, what should I expect? I hear two CFer's together are bad, is it really that bad? Should I move closer to a hospital that can care for them?

/sigh...Just wanting to be prepared i guess. Any responses welcome.

Kevin
Computer Programmer by Day, Daddy and Husband by Night!

KennasDaddy · Dec 5, 2008

Well, my wife was pregnant when our first daugher was diagnosed with CF, we are all praying our second daughter hits the other 75% chance and is not positive.

But, if our second child does have CF, what should I expect? I hear two CFer's together are bad, is it really that bad? Should I move closer to a hospital that can care for them?

/sigh...Just wanting to be prepared i guess. Any responses welcome.

Kevin
Computer Programmer by Day, Daddy and Husband by Night!

KennasDaddy · Dec 5, 2008

Well, my wife was pregnant when our first daugher was diagnosed with CF, we are all praying our second daughter hits the other 75% chance and is not positive.

But, if our second child does have CF, what should I expect? I hear two CFer's together are bad, is it really that bad? Should I move closer to a hospital that can care for them?

/sigh...Just wanting to be prepared i guess. Any responses welcome.

Kevin
Computer Programmer by Day, Daddy and Husband by Night!

KennasDaddy · Dec 5, 2008

Well, my wife was pregnant when our first daugher was diagnosed with CF, we are all praying our second daughter hits the other 75% chance and is not positive.

But, if our second child does have CF, what should I expect? I hear two CFer's together are bad, is it really that bad? Should I move closer to a hospital that can care for them?

/sigh...Just wanting to be prepared i guess. Any responses welcome.

Kevin
Computer Programmer by Day, Daddy and Husband by Night!

KennasDaddy · Dec 5, 2008

Well, my wife was pregnant when our first daugher was diagnosed with CF, we are all praying our second daughter hits the other 75% chance and is not positive.
 
 But, if our second child does have CF, what should I expect? I hear two CFer's together are bad, is it really that bad? Should I move closer to a hospital that can care for them?
 
 /sigh...Just wanting to be prepared i guess. Any responses welcome.
 
 Kevin
 Computer Programmer by Day, Daddy and Husband by Night!

sdelorenzo · Dec 5, 2008

First of all, congratulations on the new baby that is on the way! I have two kids with cf. My daugther is 7 and my son is 5. They are really close.

My son has cultured pseudomonas about once a year. My daughter has never cultured pseudomonas, only staph. So, in my kids case, they haven't passed bacteria back and forth as far as we know. They do treatments often in the same room. It is just too hard to separate them. They don't drink after one another, etc.

It is hard emotionally knowing that they both have the disease. We always do treatments, it is just hard to get them done, especially with school. Other than that, we are just blessed to have them and enjoy them so much!
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Dec 5, 2008

First of all, congratulations on the new baby that is on the way! I have two kids with cf. My daugther is 7 and my son is 5. They are really close.

My son has cultured pseudomonas about once a year. My daughter has never cultured pseudomonas, only staph. So, in my kids case, they haven't passed bacteria back and forth as far as we know. They do treatments often in the same room. It is just too hard to separate them. They don't drink after one another, etc.

It is hard emotionally knowing that they both have the disease. We always do treatments, it is just hard to get them done, especially with school. Other than that, we are just blessed to have them and enjoy them so much!
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Dec 5, 2008

First of all, congratulations on the new baby that is on the way! I have two kids with cf. My daugther is 7 and my son is 5. They are really close.

My son has cultured pseudomonas about once a year. My daughter has never cultured pseudomonas, only staph. So, in my kids case, they haven't passed bacteria back and forth as far as we know. They do treatments often in the same room. It is just too hard to separate them. They don't drink after one another, etc.

It is hard emotionally knowing that they both have the disease. We always do treatments, it is just hard to get them done, especially with school. Other than that, we are just blessed to have them and enjoy them so much!
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Dec 5, 2008

First of all, congratulations on the new baby that is on the way! I have two kids with cf. My daugther is 7 and my son is 5. They are really close.

My son has cultured pseudomonas about once a year. My daughter has never cultured pseudomonas, only staph. So, in my kids case, they haven't passed bacteria back and forth as far as we know. They do treatments often in the same room. It is just too hard to separate them. They don't drink after one another, etc.

It is hard emotionally knowing that they both have the disease. We always do treatments, it is just hard to get them done, especially with school. Other than that, we are just blessed to have them and enjoy them so much!
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Dec 5, 2008

First of all, congratulations on the new baby that is on the way! I have two kids with cf. My daugther is 7 and my son is 5. They are really close.
 
 My son has cultured pseudomonas about once a year. My daughter has never cultured pseudomonas, only staph. So, in my kids case, they haven't passed bacteria back and forth as far as we know. They do treatments often in the same room. It is just too hard to separate them. They don't drink after one another, etc.
 
 It is hard emotionally knowing that they both have the disease. We always do treatments, it is just hard to get them done, especially with school. Other than that, we are just blessed to have them and enjoy them so much!
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf

ehtansky21 · Dec 7, 2008

The best thing I did when I was pregnant with our second child, was get life insurance all set up for him prior to his birth. We have a $100,000 policy set up for him, that can grow with him as his life changes, with no evaluation health-wise. An insurance representative came to our house a couple days after Caleb's birth to make sure he looked "healthy" and then we were signed up. Once the diagnosis of CF is there though, they can't be signed up (as I am sure you know) so you have to do it ASAP.
There are some rules in our household that are far stricter than most homes. But it is all considered the norm for us. No one shares any type of eating apparatus. No toys that are made to go in the mouth (harmonicas, party blowers, whistles) are allowed in the house.

we were living in a very small town when Caleb was born. We chose to move back to our hometown, Phoenix, as a result of his diagnosis. They wanted to see him a lot at first to do weight checks.

Hope this helps!!! PM me if you have more questions. I would love to talk!!

Blessings,
Missa

ehtansky21 · Dec 7, 2008

The best thing I did when I was pregnant with our second child, was get life insurance all set up for him prior to his birth. We have a $100,000 policy set up for him, that can grow with him as his life changes, with no evaluation health-wise. An insurance representative came to our house a couple days after Caleb's birth to make sure he looked "healthy" and then we were signed up. Once the diagnosis of CF is there though, they can't be signed up (as I am sure you know) so you have to do it ASAP.
There are some rules in our household that are far stricter than most homes. But it is all considered the norm for us. No one shares any type of eating apparatus. No toys that are made to go in the mouth (harmonicas, party blowers, whistles) are allowed in the house.

we were living in a very small town when Caleb was born. We chose to move back to our hometown, Phoenix, as a result of his diagnosis. They wanted to see him a lot at first to do weight checks.

Hope this helps!!! PM me if you have more questions. I would love to talk!!

Blessings,
Missa

ehtansky21 · Dec 7, 2008

The best thing I did when I was pregnant with our second child, was get life insurance all set up for him prior to his birth. We have a $100,000 policy set up for him, that can grow with him as his life changes, with no evaluation health-wise. An insurance representative came to our house a couple days after Caleb's birth to make sure he looked "healthy" and then we were signed up. Once the diagnosis of CF is there though, they can't be signed up (as I am sure you know) so you have to do it ASAP.
There are some rules in our household that are far stricter than most homes. But it is all considered the norm for us. No one shares any type of eating apparatus. No toys that are made to go in the mouth (harmonicas, party blowers, whistles) are allowed in the house.

we were living in a very small town when Caleb was born. We chose to move back to our hometown, Phoenix, as a result of his diagnosis. They wanted to see him a lot at first to do weight checks.

Hope this helps!!! PM me if you have more questions. I would love to talk!!

Blessings,
Missa

ehtansky21 · Dec 7, 2008

The best thing I did when I was pregnant with our second child, was get life insurance all set up for him prior to his birth. We have a $100,000 policy set up for him, that can grow with him as his life changes, with no evaluation health-wise. An insurance representative came to our house a couple days after Caleb's birth to make sure he looked "healthy" and then we were signed up. Once the diagnosis of CF is there though, they can't be signed up (as I am sure you know) so you have to do it ASAP.
There are some rules in our household that are far stricter than most homes. But it is all considered the norm for us. No one shares any type of eating apparatus. No toys that are made to go in the mouth (harmonicas, party blowers, whistles) are allowed in the house.

we were living in a very small town when Caleb was born. We chose to move back to our hometown, Phoenix, as a result of his diagnosis. They wanted to see him a lot at first to do weight checks.

Hope this helps!!! PM me if you have more questions. I would love to talk!!

Blessings,
Missa

ehtansky21 · Dec 7, 2008

The best thing I did when I was pregnant with our second child, was get life insurance all set up for him prior to his birth. We have a $100,000 policy set up for him, that can grow with him as his life changes, with no evaluation health-wise. An insurance representative came to our house a couple days after Caleb's birth to make sure he looked "healthy" and then we were signed up. Once the diagnosis of CF is there though, they can't be signed up (as I am sure you know) so you have to do it ASAP.
 There are some rules in our household that are far stricter than most homes. But it is all considered the norm for us. No one shares any type of eating apparatus. No toys that are made to go in the mouth (harmonicas, party blowers, whistles) are allowed in the house.
 
 we were living in a very small town when Caleb was born. We chose to move back to our hometown, Phoenix, as a result of his diagnosis. They wanted to see him a lot at first to do weight checks.
 
 Hope this helps!!! PM me if you have more questions. I would love to talk!!
 
 Blessings,
 Missa

PedsNP2007 · Dec 7, 2008

Hi,
I hope your upcoming child doesn't have cf, but if she does, it is not a horrendous thing. And do not expect the worst nor the same things to happen. Even with the same genotype (double delta f508), my siblings and I presented differently the CF expression (phenotype).

My brother with CF had a low lung function by his teenager years. He compensated for many years despite this. He has passed on since in 4/05 after a lung transplant.

My sister is of moderate to more moderate CF health. She has pseudomonas. She is expecting a child (via surrogate) with her husband next week... she'll be a stay at home mom -- she fatigues easily after working a long day... taking care a child should be interesting to see how her health does.

I am of mild lung disease (lung function 60-70). I work full time, exercise, etc. I go into the hospital about 1-2x/year.

We all had pseudomonas growing up (unsure exactly when we cultured it). We didn't go into the hospital until 8 or 9 years old (I had my first at 18 years old). We were not separated. We did a lot together, got therapies together. We didn't share masks nor food/drinks, but who knows since that was a long time ago.

I don't think we cultured the same strain of pseudomonas. All I know is that we were not told to be separated. Granted, if I end up culturing another bacteria (ie. cepacia), I will restrict my contact with my sister. I would not want to give her anything. I also don't see her (or hug) if I am sick; we have a mutual understanding not to give each other colds as long as we are aware we have a cold.

My parents would have preferred to not have 3 cf kids, but that is what happened. We have all enjoyed our lives so far (my brother lived his life to the fullest before he died at 32 years old).

One note: Do make sure you are by an accredited CF center!!
Good luck!

Jenn
30 yo cf

PedsNP2007 · Dec 7, 2008

Hi,
I hope your upcoming child doesn't have cf, but if she does, it is not a horrendous thing. And do not expect the worst nor the same things to happen. Even with the same genotype (double delta f508), my siblings and I presented differently the CF expression (phenotype).

My brother with CF had a low lung function by his teenager years. He compensated for many years despite this. He has passed on since in 4/05 after a lung transplant.

My sister is of moderate to more moderate CF health. She has pseudomonas. She is expecting a child (via surrogate) with her husband next week... she'll be a stay at home mom -- she fatigues easily after working a long day... taking care a child should be interesting to see how her health does.

I am of mild lung disease (lung function 60-70). I work full time, exercise, etc. I go into the hospital about 1-2x/year.

We all had pseudomonas growing up (unsure exactly when we cultured it). We didn't go into the hospital until 8 or 9 years old (I had my first at 18 years old). We were not separated. We did a lot together, got therapies together. We didn't share masks nor food/drinks, but who knows since that was a long time ago.

I don't think we cultured the same strain of pseudomonas. All I know is that we were not told to be separated. Granted, if I end up culturing another bacteria (ie. cepacia), I will restrict my contact with my sister. I would not want to give her anything. I also don't see her (or hug) if I am sick; we have a mutual understanding not to give each other colds as long as we are aware we have a cold.

My parents would have preferred to not have 3 cf kids, but that is what happened. We have all enjoyed our lives so far (my brother lived his life to the fullest before he died at 32 years old).

One note: Do make sure you are by an accredited CF center!!
Good luck!

Jenn
30 yo cf

PedsNP2007 · Dec 7, 2008

Hi,
I hope your upcoming child doesn't have cf, but if she does, it is not a horrendous thing. And do not expect the worst nor the same things to happen. Even with the same genotype (double delta f508), my siblings and I presented differently the CF expression (phenotype).

My brother with CF had a low lung function by his teenager years. He compensated for many years despite this. He has passed on since in 4/05 after a lung transplant.

My sister is of moderate to more moderate CF health. She has pseudomonas. She is expecting a child (via surrogate) with her husband next week... she'll be a stay at home mom -- she fatigues easily after working a long day... taking care a child should be interesting to see how her health does.

I am of mild lung disease (lung function 60-70). I work full time, exercise, etc. I go into the hospital about 1-2x/year.

We all had pseudomonas growing up (unsure exactly when we cultured it). We didn't go into the hospital until 8 or 9 years old (I had my first at 18 years old). We were not separated. We did a lot together, got therapies together. We didn't share masks nor food/drinks, but who knows since that was a long time ago.

I don't think we cultured the same strain of pseudomonas. All I know is that we were not told to be separated. Granted, if I end up culturing another bacteria (ie. cepacia), I will restrict my contact with my sister. I would not want to give her anything. I also don't see her (or hug) if I am sick; we have a mutual understanding not to give each other colds as long as we are aware we have a cold.

My parents would have preferred to not have 3 cf kids, but that is what happened. We have all enjoyed our lives so far (my brother lived his life to the fullest before he died at 32 years old).

One note: Do make sure you are by an accredited CF center!!
Good luck!

Jenn
30 yo cf

PedsNP2007 · Dec 7, 2008

Hi,
I hope your upcoming child doesn't have cf, but if she does, it is not a horrendous thing. And do not expect the worst nor the same things to happen. Even with the same genotype (double delta f508), my siblings and I presented differently the CF expression (phenotype).

My brother with CF had a low lung function by his teenager years. He compensated for many years despite this. He has passed on since in 4/05 after a lung transplant.

My sister is of moderate to more moderate CF health. She has pseudomonas. She is expecting a child (via surrogate) with her husband next week... she'll be a stay at home mom -- she fatigues easily after working a long day... taking care a child should be interesting to see how her health does.

I am of mild lung disease (lung function 60-70). I work full time, exercise, etc. I go into the hospital about 1-2x/year.

We all had pseudomonas growing up (unsure exactly when we cultured it). We didn't go into the hospital until 8 or 9 years old (I had my first at 18 years old). We were not separated. We did a lot together, got therapies together. We didn't share masks nor food/drinks, but who knows since that was a long time ago.

I don't think we cultured the same strain of pseudomonas. All I know is that we were not told to be separated. Granted, if I end up culturing another bacteria (ie. cepacia), I will restrict my contact with my sister. I would not want to give her anything. I also don't see her (or hug) if I am sick; we have a mutual understanding not to give each other colds as long as we are aware we have a cold.

My parents would have preferred to not have 3 cf kids, but that is what happened. We have all enjoyed our lives so far (my brother lived his life to the fullest before he died at 32 years old).

One note: Do make sure you are by an accredited CF center!!
Good luck!

Jenn
30 yo cf

PedsNP2007 · Dec 7, 2008

Hi,
 I hope your upcoming child doesn't have cf, but if she does, it is not a horrendous thing. And do not expect the worst nor the same things to happen. Even with the same genotype (double delta f508), my siblings and I presented differently the CF expression (phenotype).
 
 My brother with CF had a low lung function by his teenager years. He compensated for many years despite this. He has passed on since in 4/05 after a lung transplant.
 
 My sister is of moderate to more moderate CF health. She has pseudomonas. She is expecting a child (via surrogate) with her husband next week... she'll be a stay at home mom -- she fatigues easily after working a long day... taking care a child should be interesting to see how her health does.
 
 I am of mild lung disease (lung function 60-70). I work full time, exercise, etc. I go into the hospital about 1-2x/year.
 
 We all had pseudomonas growing up (unsure exactly when we cultured it). We didn't go into the hospital until 8 or 9 years old (I had my first at 18 years old). We were not separated. We did a lot together, got therapies together. We didn't share masks nor food/drinks, but who knows since that was a long time ago.
 
 I don't think we cultured the same strain of pseudomonas. All I know is that we were not told to be separated. Granted, if I end up culturing another bacteria (ie. cepacia), I will restrict my contact with my sister. I would not want to give her anything. I also don't see her (or hug) if I am sick; we have a mutual understanding not to give each other colds as long as we are aware we have a cold.
 
 My parents would have preferred to not have 3 cf kids, but that is what happened. We have all enjoyed our lives so far (my brother lived his life to the fullest before he died at 32 years old).
 
 One note: Do make sure you are by an accredited CF center!!
 Good luck!
 
 Jenn
 30 yo cf

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