How is it with two kids with CF?

zoeg · Mar 18, 2008

Hi all,

I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.) Well, everything has been going great until yesterday. At my 34 week ultrasound (supposed to be my last) the tech said everything looked wonderful- no bright bowel or anything. Then the dr. came in and said he didn't agree and that there was a bit of brightness. He said no blockage, but a little brightness and I have to go back weekly now. I asked if he thinks it is CF, and he said he thinks there is a 50/50 chance. I am terrified! I know we should have been prepared for this, but everything has been so different and better this time I guess I just let hope get in the way of reality.

My questions are:
1. How is it with 2 CF kids? My husband thinks they will be able to support/rely on each other as they grow and may not feel so alone. I don't know...I'm just scared.

2. Kate has been super healthy besides normal kid stuff. Do you think that changes when you have two CFers that can pass germs?

3. Has anyone else had a bright bowel ultrasound that DIDN'T mean CF? I keep hoping since the tech didn't see it that maybe it is not CF since it wasn't too bad. I'm sure I'm just sounding like I'm in denial though....

Thanks for your help,
Zoe, mom to Kate 2wCF

zoeg · Mar 18, 2008

Hi all,

I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.) Well, everything has been going great until yesterday. At my 34 week ultrasound (supposed to be my last) the tech said everything looked wonderful- no bright bowel or anything. Then the dr. came in and said he didn't agree and that there was a bit of brightness. He said no blockage, but a little brightness and I have to go back weekly now. I asked if he thinks it is CF, and he said he thinks there is a 50/50 chance. I am terrified! I know we should have been prepared for this, but everything has been so different and better this time I guess I just let hope get in the way of reality.

My questions are:
1. How is it with 2 CF kids? My husband thinks they will be able to support/rely on each other as they grow and may not feel so alone. I don't know...I'm just scared.

2. Kate has been super healthy besides normal kid stuff. Do you think that changes when you have two CFers that can pass germs?

3. Has anyone else had a bright bowel ultrasound that DIDN'T mean CF? I keep hoping since the tech didn't see it that maybe it is not CF since it wasn't too bad. I'm sure I'm just sounding like I'm in denial though....

Thanks for your help,
Zoe, mom to Kate 2wCF

zoeg · Mar 18, 2008

Hi all,

I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.) Well, everything has been going great until yesterday. At my 34 week ultrasound (supposed to be my last) the tech said everything looked wonderful- no bright bowel or anything. Then the dr. came in and said he didn't agree and that there was a bit of brightness. He said no blockage, but a little brightness and I have to go back weekly now. I asked if he thinks it is CF, and he said he thinks there is a 50/50 chance. I am terrified! I know we should have been prepared for this, but everything has been so different and better this time I guess I just let hope get in the way of reality.

My questions are:
1. How is it with 2 CF kids? My husband thinks they will be able to support/rely on each other as they grow and may not feel so alone. I don't know...I'm just scared.

2. Kate has been super healthy besides normal kid stuff. Do you think that changes when you have two CFers that can pass germs?

3. Has anyone else had a bright bowel ultrasound that DIDN'T mean CF? I keep hoping since the tech didn't see it that maybe it is not CF since it wasn't too bad. I'm sure I'm just sounding like I'm in denial though....

Thanks for your help,
Zoe, mom to Kate 2wCF

zoeg · Mar 18, 2008

Hi all,

I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.) Well, everything has been going great until yesterday. At my 34 week ultrasound (supposed to be my last) the tech said everything looked wonderful- no bright bowel or anything. Then the dr. came in and said he didn't agree and that there was a bit of brightness. He said no blockage, but a little brightness and I have to go back weekly now. I asked if he thinks it is CF, and he said he thinks there is a 50/50 chance. I am terrified! I know we should have been prepared for this, but everything has been so different and better this time I guess I just let hope get in the way of reality.

My questions are:
1. How is it with 2 CF kids? My husband thinks they will be able to support/rely on each other as they grow and may not feel so alone. I don't know...I'm just scared.

2. Kate has been super healthy besides normal kid stuff. Do you think that changes when you have two CFers that can pass germs?

3. Has anyone else had a bright bowel ultrasound that DIDN'T mean CF? I keep hoping since the tech didn't see it that maybe it is not CF since it wasn't too bad. I'm sure I'm just sounding like I'm in denial though....

Thanks for your help,
Zoe, mom to Kate 2wCF

zoeg · Mar 18, 2008

Hi all,
 
 I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.) Well, everything has been going great until yesterday. At my 34 week ultrasound (supposed to be my last) the tech said everything looked wonderful- no bright bowel or anything. Then the dr. came in and said he didn't agree and that there was a bit of brightness. He said no blockage, but a little brightness and I have to go back weekly now. I asked if he thinks it is CF, and he said he thinks there is a 50/50 chance. I am terrified! I know we should have been prepared for this, but everything has been so different and better this time I guess I just let hope get in the way of reality.
 
 My questions are:
 1. How is it with 2 CF kids? My husband thinks they will be able to support/rely on each other as they grow and may not feel so alone. I don't know...I'm just scared.
 
 2. Kate has been super healthy besides normal kid stuff. Do you think that changes when you have two CFers that can pass germs?
 
 3. Has anyone else had a bright bowel ultrasound that DIDN'T mean CF? I keep hoping since the tech didn't see it that maybe it is not CF since it wasn't too bad. I'm sure I'm just sounding like I'm in denial though....
 
 Thanks for your help,
 Zoe, mom to Kate 2wCF

sdelorenzo · Mar 18, 2008

Our first born, Sophia, was diagnosed at one month due to failure to thrive. Our second, Jack, was diagnosed in the womb due to bright bowel. We didn't do an amnio for him either. I was really scared too when I found out my second would have cf. It is much harder I think to find out when you are pregnant. Once my son was born it was much easier not to focus on him having cf. My children are very close. They have always cultured different bacteria. Hopefully your baby will not have meconium illeus or cf, but you should plan for it just in case. It did help tremendously for us to know what to do about Jack's situation before he was born. He was able to have 10 days of enemas that allowed him to avoid surgery. You need to see a perinatal dr soon. They are experts on bright bowel in the womb. Also, you need to find a pediatric surgeon soon who is familiar with meconium illeus. Can you e-mail me at sdelorenzo@sbcglobal.net so I can pass on some more info to you?
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Mar 18, 2008

Our first born, Sophia, was diagnosed at one month due to failure to thrive. Our second, Jack, was diagnosed in the womb due to bright bowel. We didn't do an amnio for him either. I was really scared too when I found out my second would have cf. It is much harder I think to find out when you are pregnant. Once my son was born it was much easier not to focus on him having cf. My children are very close. They have always cultured different bacteria. Hopefully your baby will not have meconium illeus or cf, but you should plan for it just in case. It did help tremendously for us to know what to do about Jack's situation before he was born. He was able to have 10 days of enemas that allowed him to avoid surgery. You need to see a perinatal dr soon. They are experts on bright bowel in the womb. Also, you need to find a pediatric surgeon soon who is familiar with meconium illeus. Can you e-mail me at sdelorenzo@sbcglobal.net so I can pass on some more info to you?
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Mar 18, 2008

Our first born, Sophia, was diagnosed at one month due to failure to thrive. Our second, Jack, was diagnosed in the womb due to bright bowel. We didn't do an amnio for him either. I was really scared too when I found out my second would have cf. It is much harder I think to find out when you are pregnant. Once my son was born it was much easier not to focus on him having cf. My children are very close. They have always cultured different bacteria. Hopefully your baby will not have meconium illeus or cf, but you should plan for it just in case. It did help tremendously for us to know what to do about Jack's situation before he was born. He was able to have 10 days of enemas that allowed him to avoid surgery. You need to see a perinatal dr soon. They are experts on bright bowel in the womb. Also, you need to find a pediatric surgeon soon who is familiar with meconium illeus. Can you e-mail me at sdelorenzo@sbcglobal.net so I can pass on some more info to you?
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Mar 18, 2008

Our first born, Sophia, was diagnosed at one month due to failure to thrive. Our second, Jack, was diagnosed in the womb due to bright bowel. We didn't do an amnio for him either. I was really scared too when I found out my second would have cf. It is much harder I think to find out when you are pregnant. Once my son was born it was much easier not to focus on him having cf. My children are very close. They have always cultured different bacteria. Hopefully your baby will not have meconium illeus or cf, but you should plan for it just in case. It did help tremendously for us to know what to do about Jack's situation before he was born. He was able to have 10 days of enemas that allowed him to avoid surgery. You need to see a perinatal dr soon. They are experts on bright bowel in the womb. Also, you need to find a pediatric surgeon soon who is familiar with meconium illeus. Can you e-mail me at sdelorenzo@sbcglobal.net so I can pass on some more info to you?
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Mar 18, 2008

Our first born, Sophia, was diagnosed at one month due to failure to thrive. Our second, Jack, was diagnosed in the womb due to bright bowel. We didn't do an amnio for him either. I was really scared too when I found out my second would have cf. It is much harder I think to find out when you are pregnant. Once my son was born it was much easier not to focus on him having cf. My children are very close. They have always cultured different bacteria. Hopefully your baby will not have meconium illeus or cf, but you should plan for it just in case. It did help tremendously for us to know what to do about Jack's situation before he was born. He was able to have 10 days of enemas that allowed him to avoid surgery. You need to see a perinatal dr soon. They are experts on bright bowel in the womb. Also, you need to find a pediatric surgeon soon who is familiar with meconium illeus. Can you e-mail me at sdelorenzo@sbcglobal.net so I can pass on some more info to you?
 Sharon, mom of Sophia, 6 and Jack, 4 both with cf

Mommafirst · Mar 18, 2008

I only have one with CF and she is my youngest, so I don't think I can really answer your questions. I just wanted to say I'm so sorry that your pregnancy is being so marred by this fear. CF will be a part of your new baby's life whether or not he or she has it. I hope you only have one CF child to love, but if your new baby has CF too, I'm sure there are good things along with all the bad. (((HUGS)))

Mommafirst · Mar 18, 2008

I only have one with CF and she is my youngest, so I don't think I can really answer your questions. I just wanted to say I'm so sorry that your pregnancy is being so marred by this fear. CF will be a part of your new baby's life whether or not he or she has it. I hope you only have one CF child to love, but if your new baby has CF too, I'm sure there are good things along with all the bad. (((HUGS)))

Mommafirst · Mar 18, 2008

I only have one with CF and she is my youngest, so I don't think I can really answer your questions. I just wanted to say I'm so sorry that your pregnancy is being so marred by this fear. CF will be a part of your new baby's life whether or not he or she has it. I hope you only have one CF child to love, but if your new baby has CF too, I'm sure there are good things along with all the bad. (((HUGS)))

Mommafirst · Mar 18, 2008

I only have one with CF and she is my youngest, so I don't think I can really answer your questions. I just wanted to say I'm so sorry that your pregnancy is being so marred by this fear. CF will be a part of your new baby's life whether or not he or she has it. I hope you only have one CF child to love, but if your new baby has CF too, I'm sure there are good things along with all the bad. (((HUGS)))

Mommafirst · Mar 18, 2008

I only have one with CF and she is my youngest, so I don't think I can really answer your questions. I just wanted to say I'm so sorry that your pregnancy is being so marred by this fear. CF will be a part of your new baby's life whether or not he or she has it. I hope you only have one CF child to love, but if your new baby has CF too, I'm sure there are good things along with all the bad. (((HUGS)))

pjspiegle · Mar 18, 2008

I only have one so I am going to answer based on my best friend that has two daughters with CF.

For her, she says she doesn't know if it is harder or not because it is what she has had and doesn't know any different. In her case, because of where her 1st was born, her youngest was daignosed first and then the oldest was at age 2. They pretty much knew immediately when Faith was diagnosed because she was not growing and they knew something was wrong but did not have a diagnosis yet.

The girls are a great support for one another. They love it when they get to do their tune-ups together and hate it if one needs a tune-up ant the other doesn't. They both have such different personalities, completely and totally different in every way. Of coarse, they both have the exact same 2 mutations, but both are very different with where they are with the disease right now. The younger one is having much more difficulty presently, yet, she is the fighter, lots of attitude, and probably more able to handle it, she has mycobacterium abscessus. Even though they have the same genes, they do not always grow the same things and even though they would like to be sick at the same time, they are not always sick at the same time, and if they are both sick, it is not always with the same things.

They do their treatments together which seems to be helpful, don't know if you read the last week when we were talking about "entertaining" the "normal" kids during treatments or not, but this is one of the benefits of having two, if you can call anything about CF a benefit. For these two girls, I think it has helped them have a very special and unique bond that is stronger than the average sibling bond. They are both very special little girls and I know that my friend would not give them up for anything, the CF she would in a heartbeat, but not the girls themselves.

She often says she would not know what to do if she had had one with and one without CF. It is all she knows and so she just does what she has to do. She says she doesn't think that it is any harder doing double of everything because if you are doing it for one, it doesn't take much to set up for two, unless you only have one of everything. I know that she would advise that you demand two of everything from the beginning, two vests, two travel nebs, two regular nebs, and so on, otherwise, everything will take twice as long.

You can do it!! I know it must be very overwhelming and scary right now but you will have lots of support right here on this site! Plus, you might be worried about nothing. The doctor is human and without an amino, they really can't say for sure either way. Plus, until that baby is born, God could heal that precious baby! Well, really, He could after the baby is born as well if He wanted, but if you ask Him now, there is still HOPE that the baby could be born "normal" and "healthy."

Will keep you and that little one in our prayers! Please let us know when the baby is born and that you and the baby are ok. By ok, I mean that the birth process went ok and all is doing good.

pjspiegle · Mar 18, 2008

I only have one so I am going to answer based on my best friend that has two daughters with CF.

For her, she says she doesn't know if it is harder or not because it is what she has had and doesn't know any different. In her case, because of where her 1st was born, her youngest was daignosed first and then the oldest was at age 2. They pretty much knew immediately when Faith was diagnosed because she was not growing and they knew something was wrong but did not have a diagnosis yet.

The girls are a great support for one another. They love it when they get to do their tune-ups together and hate it if one needs a tune-up ant the other doesn't. They both have such different personalities, completely and totally different in every way. Of coarse, they both have the exact same 2 mutations, but both are very different with where they are with the disease right now. The younger one is having much more difficulty presently, yet, she is the fighter, lots of attitude, and probably more able to handle it, she has mycobacterium abscessus. Even though they have the same genes, they do not always grow the same things and even though they would like to be sick at the same time, they are not always sick at the same time, and if they are both sick, it is not always with the same things.

They do their treatments together which seems to be helpful, don't know if you read the last week when we were talking about "entertaining" the "normal" kids during treatments or not, but this is one of the benefits of having two, if you can call anything about CF a benefit. For these two girls, I think it has helped them have a very special and unique bond that is stronger than the average sibling bond. They are both very special little girls and I know that my friend would not give them up for anything, the CF she would in a heartbeat, but not the girls themselves.

She often says she would not know what to do if she had had one with and one without CF. It is all she knows and so she just does what she has to do. She says she doesn't think that it is any harder doing double of everything because if you are doing it for one, it doesn't take much to set up for two, unless you only have one of everything. I know that she would advise that you demand two of everything from the beginning, two vests, two travel nebs, two regular nebs, and so on, otherwise, everything will take twice as long.

You can do it!! I know it must be very overwhelming and scary right now but you will have lots of support right here on this site! Plus, you might be worried about nothing. The doctor is human and without an amino, they really can't say for sure either way. Plus, until that baby is born, God could heal that precious baby! Well, really, He could after the baby is born as well if He wanted, but if you ask Him now, there is still HOPE that the baby could be born "normal" and "healthy."

Will keep you and that little one in our prayers! Please let us know when the baby is born and that you and the baby are ok. By ok, I mean that the birth process went ok and all is doing good.

pjspiegle · Mar 18, 2008

I only have one so I am going to answer based on my best friend that has two daughters with CF.

For her, she says she doesn't know if it is harder or not because it is what she has had and doesn't know any different. In her case, because of where her 1st was born, her youngest was daignosed first and then the oldest was at age 2. They pretty much knew immediately when Faith was diagnosed because she was not growing and they knew something was wrong but did not have a diagnosis yet.

The girls are a great support for one another. They love it when they get to do their tune-ups together and hate it if one needs a tune-up ant the other doesn't. They both have such different personalities, completely and totally different in every way. Of coarse, they both have the exact same 2 mutations, but both are very different with where they are with the disease right now. The younger one is having much more difficulty presently, yet, she is the fighter, lots of attitude, and probably more able to handle it, she has mycobacterium abscessus. Even though they have the same genes, they do not always grow the same things and even though they would like to be sick at the same time, they are not always sick at the same time, and if they are both sick, it is not always with the same things.

They do their treatments together which seems to be helpful, don't know if you read the last week when we were talking about "entertaining" the "normal" kids during treatments or not, but this is one of the benefits of having two, if you can call anything about CF a benefit. For these two girls, I think it has helped them have a very special and unique bond that is stronger than the average sibling bond. They are both very special little girls and I know that my friend would not give them up for anything, the CF she would in a heartbeat, but not the girls themselves.

She often says she would not know what to do if she had had one with and one without CF. It is all she knows and so she just does what she has to do. She says she doesn't think that it is any harder doing double of everything because if you are doing it for one, it doesn't take much to set up for two, unless you only have one of everything. I know that she would advise that you demand two of everything from the beginning, two vests, two travel nebs, two regular nebs, and so on, otherwise, everything will take twice as long.

You can do it!! I know it must be very overwhelming and scary right now but you will have lots of support right here on this site! Plus, you might be worried about nothing. The doctor is human and without an amino, they really can't say for sure either way. Plus, until that baby is born, God could heal that precious baby! Well, really, He could after the baby is born as well if He wanted, but if you ask Him now, there is still HOPE that the baby could be born "normal" and "healthy."

Will keep you and that little one in our prayers! Please let us know when the baby is born and that you and the baby are ok. By ok, I mean that the birth process went ok and all is doing good.

pjspiegle · Mar 18, 2008

I only have one so I am going to answer based on my best friend that has two daughters with CF.

For her, she says she doesn't know if it is harder or not because it is what she has had and doesn't know any different. In her case, because of where her 1st was born, her youngest was daignosed first and then the oldest was at age 2. They pretty much knew immediately when Faith was diagnosed because she was not growing and they knew something was wrong but did not have a diagnosis yet.

The girls are a great support for one another. They love it when they get to do their tune-ups together and hate it if one needs a tune-up ant the other doesn't. They both have such different personalities, completely and totally different in every way. Of coarse, they both have the exact same 2 mutations, but both are very different with where they are with the disease right now. The younger one is having much more difficulty presently, yet, she is the fighter, lots of attitude, and probably more able to handle it, she has mycobacterium abscessus. Even though they have the same genes, they do not always grow the same things and even though they would like to be sick at the same time, they are not always sick at the same time, and if they are both sick, it is not always with the same things.

They do their treatments together which seems to be helpful, don't know if you read the last week when we were talking about "entertaining" the "normal" kids during treatments or not, but this is one of the benefits of having two, if you can call anything about CF a benefit. For these two girls, I think it has helped them have a very special and unique bond that is stronger than the average sibling bond. They are both very special little girls and I know that my friend would not give them up for anything, the CF she would in a heartbeat, but not the girls themselves.

She often says she would not know what to do if she had had one with and one without CF. It is all she knows and so she just does what she has to do. She says she doesn't think that it is any harder doing double of everything because if you are doing it for one, it doesn't take much to set up for two, unless you only have one of everything. I know that she would advise that you demand two of everything from the beginning, two vests, two travel nebs, two regular nebs, and so on, otherwise, everything will take twice as long.

You can do it!! I know it must be very overwhelming and scary right now but you will have lots of support right here on this site! Plus, you might be worried about nothing. The doctor is human and without an amino, they really can't say for sure either way. Plus, until that baby is born, God could heal that precious baby! Well, really, He could after the baby is born as well if He wanted, but if you ask Him now, there is still HOPE that the baby could be born "normal" and "healthy."

Will keep you and that little one in our prayers! Please let us know when the baby is born and that you and the baby are ok. By ok, I mean that the birth process went ok and all is doing good.

pjspiegle · Mar 18, 2008

I only have one so I am going to answer based on my best friend that has two daughters with CF.
 
 For her, she says she doesn't know if it is harder or not because it is what she has had and doesn't know any different. In her case, because of where her 1st was born, her youngest was daignosed first and then the oldest was at age 2. They pretty much knew immediately when Faith was diagnosed because she was not growing and they knew something was wrong but did not have a diagnosis yet.
 
 The girls are a great support for one another. They love it when they get to do their tune-ups together and hate it if one needs a tune-up ant the other doesn't. They both have such different personalities, completely and totally different in every way. Of coarse, they both have the exact same 2 mutations, but both are very different with where they are with the disease right now. The younger one is having much more difficulty presently, yet, she is the fighter, lots of attitude, and probably more able to handle it, she has mycobacterium abscessus. Even though they have the same genes, they do not always grow the same things and even though they would like to be sick at the same time, they are not always sick at the same time, and if they are both sick, it is not always with the same things.
 
 They do their treatments together which seems to be helpful, don't know if you read the last week when we were talking about "entertaining" the "normal" kids during treatments or not, but this is one of the benefits of having two, if you can call anything about CF a benefit. For these two girls, I think it has helped them have a very special and unique bond that is stronger than the average sibling bond. They are both very special little girls and I know that my friend would not give them up for anything, the CF she would in a heartbeat, but not the girls themselves.
 
 She often says she would not know what to do if she had had one with and one without CF. It is all she knows and so she just does what she has to do. She says she doesn't think that it is any harder doing double of everything because if you are doing it for one, it doesn't take much to set up for two, unless you only have one of everything. I know that she would advise that you demand two of everything from the beginning, two vests, two travel nebs, two regular nebs, and so on, otherwise, everything will take twice as long.
 
 You can do it!! I know it must be very overwhelming and scary right now but you will have lots of support right here on this site! Plus, you might be worried about nothing. The doctor is human and without an amino, they really can't say for sure either way. Plus, until that baby is born, God could heal that precious baby! Well, really, He could after the baby is born as well if He wanted, but if you ask Him now, there is still HOPE that the baby could be born "normal" and "healthy."
 
 Will keep you and that little one in our prayers! Please let us know when the baby is born and that you and the baby are ok. By ok, I mean that the birth process went ok and all is doing good.

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