Preparing family

[SJCmoon]

A bit of background. . .When pregnant with my first child, DH & I found out we are carriers. She too was born a carrier. Jump ahead 3/4 years. We tried PGD to avoid CF, it was not successful. We also had no remaining embryos to freeze and try implanting with. We were on board with the idea of screened donor sperm. We had chosen the donor, had everything in place between the donor center & the hospital. We were waiting for my cycle to start and it never did. We had a surprise. . .We decided very early that come what may, this baby was meant.

We opted not to have a CVS but wait to do amnio. Our son was dx at 20 weeks, heterogeneous DeltaF508. Since the dx we have met with the CF team at our hospital, are getting ultrasounds to monitor him every 2-3 weeks, and have a neonatal consult (just in case he needs surgery for mecomium ilius). According to the ultrasounds his growth is great, and all other systems are functioning normally.

Everytime we have an appointment, DH & I are complimented for preparing ourselves for the birth of our son. We have told our daughter that her brother will need to have medicine and some extra care to stay healthy. She seems to accept that fo rnow. But, I still have worries & questions. Maybe answers can be given here.

1) Is there a possibility of his birth being induced to help avoid surgery?

2) Is there anyway that the doctors could tell ahead of time if surgery is needed?

3) Can a newborn "eat" applesauce to take enzymes? How?

I have been lurking on here for a few weeks now, but I realize I needed to finally reach out to people who would understand. Thank you for listening.

 

[SJCmoon]

A bit of background. . .When pregnant with my first child, DH & I found out we are carriers. She too was born a carrier. Jump ahead 3/4 years. We tried PGD to avoid CF, it was not successful. We also had no remaining embryos to freeze and try implanting with. We were on board with the idea of screened donor sperm. We had chosen the donor, had everything in place between the donor center & the hospital. We were waiting for my cycle to start and it never did. We had a surprise. . .We decided very early that come what may, this baby was meant.

We opted not to have a CVS but wait to do amnio. Our son was dx at 20 weeks, heterogeneous DeltaF508. Since the dx we have met with the CF team at our hospital, are getting ultrasounds to monitor him every 2-3 weeks, and have a neonatal consult (just in case he needs surgery for mecomium ilius). According to the ultrasounds his growth is great, and all other systems are functioning normally.

Everytime we have an appointment, DH & I are complimented for preparing ourselves for the birth of our son. We have told our daughter that her brother will need to have medicine and some extra care to stay healthy. She seems to accept that fo rnow. But, I still have worries & questions. Maybe answers can be given here.

1) Is there a possibility of his birth being induced to help avoid surgery?

2) Is there anyway that the doctors could tell ahead of time if surgery is needed?

3) Can a newborn "eat" applesauce to take enzymes? How?

I have been lurking on here for a few weeks now, but I realize I needed to finally reach out to people who would understand. Thank you for listening.

 

[SJCmoon]

A bit of background. . .When pregnant with my first child, DH & I found out we are carriers. She too was born a carrier. Jump ahead 3/4 years. We tried PGD to avoid CF, it was not successful. We also had no remaining embryos to freeze and try implanting with. We were on board with the idea of screened donor sperm. We had chosen the donor, had everything in place between the donor center & the hospital. We were waiting for my cycle to start and it never did. We had a surprise. . .We decided very early that come what may, this baby was meant.

We opted not to have a CVS but wait to do amnio. Our son was dx at 20 weeks, heterogeneous DeltaF508. Since the dx we have met with the CF team at our hospital, are getting ultrasounds to monitor him every 2-3 weeks, and have a neonatal consult (just in case he needs surgery for mecomium ilius). According to the ultrasounds his growth is great, and all other systems are functioning normally.

Everytime we have an appointment, DH & I are complimented for preparing ourselves for the birth of our son. We have told our daughter that her brother will need to have medicine and some extra care to stay healthy. She seems to accept that fo rnow. But, I still have worries & questions. Maybe answers can be given here.

1) Is there a possibility of his birth being induced to help avoid surgery?

2) Is there anyway that the doctors could tell ahead of time if surgery is needed?

3) Can a newborn "eat" applesauce to take enzymes? How?

I have been lurking on here for a few weeks now, but I realize I needed to finally reach out to people who would understand. Thank you for listening.

 

[SJCmoon]

A bit of background. . .When pregnant with my first child, DH & I found out we are carriers. She too was born a carrier. Jump ahead 3/4 years. We tried PGD to avoid CF, it was not successful. We also had no remaining embryos to freeze and try implanting with. We were on board with the idea of screened donor sperm. We had chosen the donor, had everything in place between the donor center & the hospital. We were waiting for my cycle to start and it never did. We had a surprise. . .We decided very early that come what may, this baby was meant.

We opted not to have a CVS but wait to do amnio. Our son was dx at 20 weeks, heterogeneous DeltaF508. Since the dx we have met with the CF team at our hospital, are getting ultrasounds to monitor him every 2-3 weeks, and have a neonatal consult (just in case he needs surgery for mecomium ilius). According to the ultrasounds his growth is great, and all other systems are functioning normally.

Everytime we have an appointment, DH & I are complimented for preparing ourselves for the birth of our son. We have told our daughter that her brother will need to have medicine and some extra care to stay healthy. She seems to accept that fo rnow. But, I still have worries & questions. Maybe answers can be given here.

1) Is there a possibility of his birth being induced to help avoid surgery?

2) Is there anyway that the doctors could tell ahead of time if surgery is needed?

3) Can a newborn "eat" applesauce to take enzymes? How?

I have been lurking on here for a few weeks now, but I realize I needed to finally reach out to people who would understand. Thank you for listening.

 

[SJCmoon]

A bit of background. . .When pregnant with my first child, DH & I found out we are carriers. She too was born a carrier. Jump ahead 3/4 years. We tried PGD to avoid CF, it was not successful. We also had no remaining embryos to freeze and try implanting with. We were on board with the idea of screened donor sperm. We had chosen the donor, had everything in place between the donor center & the hospital. We were waiting for my cycle to start and it never did. We had a surprise. . .We decided very early that come what may, this baby was meant.

We opted not to have a CVS but wait to do amnio. Our son was dx at 20 weeks, heterogeneous DeltaF508. Since the dx we have met with the CF team at our hospital, are getting ultrasounds to monitor him every 2-3 weeks, and have a neonatal consult (just in case he needs surgery for mecomium ilius). According to the ultrasounds his growth is great, and all other systems are functioning normally.

Everytime we have an appointment, DH & I are complimented for preparing ourselves for the birth of our son. We have told our daughter that her brother will need to have medicine and some extra care to stay healthy. She seems to accept that fo rnow. But, I still have worries & questions. Maybe answers can be given here.

1) Is there a possibility of his birth being induced to help avoid surgery?

2) Is there anyway that the doctors could tell ahead of time if surgery is needed?

3) Can a newborn "eat" applesauce to take enzymes? How?

I have been lurking on here for a few weeks now, but I realize I needed to finally reach out to people who would understand. Thank you for listening.

 

[ktsmom]

First, congratulations on your son. He will be a joy and as you said, he was meant to be! Our daughter wasn't diagnosed until age 3 so I can't answer your specific questions. But I will say that while our older daughter might not understand the full gravity of her sister's diagnosis, she knows the names of all of her medications and does 'happy dances' and the like to help Katy cooperate with treatments.

Mostly I wanted to say welcome, and you will defintely find lots of support and advice here. We DO understand!

 

[ktsmom]

First, congratulations on your son. He will be a joy and as you said, he was meant to be! Our daughter wasn't diagnosed until age 3 so I can't answer your specific questions. But I will say that while our older daughter might not understand the full gravity of her sister's diagnosis, she knows the names of all of her medications and does 'happy dances' and the like to help Katy cooperate with treatments.

Mostly I wanted to say welcome, and you will defintely find lots of support and advice here. We DO understand!

 

[ktsmom]

First, congratulations on your son. He will be a joy and as you said, he was meant to be! Our daughter wasn't diagnosed until age 3 so I can't answer your specific questions. But I will say that while our older daughter might not understand the full gravity of her sister's diagnosis, she knows the names of all of her medications and does 'happy dances' and the like to help Katy cooperate with treatments.

Mostly I wanted to say welcome, and you will defintely find lots of support and advice here. We DO understand!

 

[ktsmom]

First, congratulations on your son. He will be a joy and as you said, he was meant to be! Our daughter wasn't diagnosed until age 3 so I can't answer your specific questions. But I will say that while our older daughter might not understand the full gravity of her sister's diagnosis, she knows the names of all of her medications and does 'happy dances' and the like to help Katy cooperate with treatments.

Mostly I wanted to say welcome, and you will defintely find lots of support and advice here. We DO understand!

 

[ktsmom]

First, congratulations on your son. He will be a joy and as you said, he was meant to be! Our daughter wasn't diagnosed until age 3 so I can't answer your specific questions. But I will say that while our older daughter might not understand the full gravity of her sister's diagnosis, she knows the names of all of her medications and does 'happy dances' and the like to help Katy cooperate with treatments.

Mostly I wanted to say welcome, and you will defintely find lots of support and advice here. We DO understand!

 

[xstefani3x]

Hi. I also want to congratulate you on your son. When i was pregnant with Lily (who is now 3), i didn't even really understand what CF is but she was having all hte markers for it. I got tested, and found out i was a carrier the night i went in to have her.
Basically, they can't induce labor to avoid surgery (or from what my experience was and several others). Lily was born with a meconium ilius (i can't remember how far along i was when they saw it), but i also kept having ultrasounds every week to keep an eye on it. Finaly at about 38 weeks my doctor had me called in to induce labor because he was afraid she would be half way out .. and that her belly would be to big and so she would be stuck... lovely picture, i know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I ended up being lucky because when i got there ( i had been being watched very closely cuz i was about to go on my own anyway), she was already on her way out. So that was hte lucky part.
The sad part is after she came out they did all their tests, did a barium enema to check on it (all in an hour of her being in the world) and decided that they would wait 24 hours to see if she could pass it by herself. Everything else was normal, and her scores were great! It was my first time and everything went as smooth as a whistle.
Then the next day she still didn't pass so they decided to send her to Syracuase (which is about 2 hours from me) for surgery. Oh boy.. what a night...
She went up to the Nicu, they did it the next morning, and then it was just waiting. And waiting.. and waiting.. i won't go into all the drama.
Anyway, newborns can eat applesauce from day 1. No problem... i think it helps them when they start spoon feeding cuz she picked up on it like nothing! Lily was started on enzymes at 2 weeks old (she wasn't able to feed until then).
So they will usually get a really good reading on what is going on all the way up until delivery.
I wish you luck and hope everything turns out well!!!! They are little fighters!!! and you guys will give him all the love he needs to fight and grow!

 

[xstefani3x]

Hi. I also want to congratulate you on your son. When i was pregnant with Lily (who is now 3), i didn't even really understand what CF is but she was having all hte markers for it. I got tested, and found out i was a carrier the night i went in to have her.
Basically, they can't induce labor to avoid surgery (or from what my experience was and several others). Lily was born with a meconium ilius (i can't remember how far along i was when they saw it), but i also kept having ultrasounds every week to keep an eye on it. Finaly at about 38 weeks my doctor had me called in to induce labor because he was afraid she would be half way out .. and that her belly would be to big and so she would be stuck... lovely picture, i know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I ended up being lucky because when i got there ( i had been being watched very closely cuz i was about to go on my own anyway), she was already on her way out. So that was hte lucky part.
The sad part is after she came out they did all their tests, did a barium enema to check on it (all in an hour of her being in the world) and decided that they would wait 24 hours to see if she could pass it by herself. Everything else was normal, and her scores were great! It was my first time and everything went as smooth as a whistle.
Then the next day she still didn't pass so they decided to send her to Syracuase (which is about 2 hours from me) for surgery. Oh boy.. what a night...
She went up to the Nicu, they did it the next morning, and then it was just waiting. And waiting.. and waiting.. i won't go into all the drama.
Anyway, newborns can eat applesauce from day 1. No problem... i think it helps them when they start spoon feeding cuz she picked up on it like nothing! Lily was started on enzymes at 2 weeks old (she wasn't able to feed until then).
So they will usually get a really good reading on what is going on all the way up until delivery.
I wish you luck and hope everything turns out well!!!! They are little fighters!!! and you guys will give him all the love he needs to fight and grow!

 

[xstefani3x]

Hi. I also want to congratulate you on your son. When i was pregnant with Lily (who is now 3), i didn't even really understand what CF is but she was having all hte markers for it. I got tested, and found out i was a carrier the night i went in to have her.
Basically, they can't induce labor to avoid surgery (or from what my experience was and several others). Lily was born with a meconium ilius (i can't remember how far along i was when they saw it), but i also kept having ultrasounds every week to keep an eye on it. Finaly at about 38 weeks my doctor had me called in to induce labor because he was afraid she would be half way out .. and that her belly would be to big and so she would be stuck... lovely picture, i know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I ended up being lucky because when i got there ( i had been being watched very closely cuz i was about to go on my own anyway), she was already on her way out. So that was hte lucky part.
The sad part is after she came out they did all their tests, did a barium enema to check on it (all in an hour of her being in the world) and decided that they would wait 24 hours to see if she could pass it by herself. Everything else was normal, and her scores were great! It was my first time and everything went as smooth as a whistle.
Then the next day she still didn't pass so they decided to send her to Syracuase (which is about 2 hours from me) for surgery. Oh boy.. what a night...
She went up to the Nicu, they did it the next morning, and then it was just waiting. And waiting.. and waiting.. i won't go into all the drama.
Anyway, newborns can eat applesauce from day 1. No problem... i think it helps them when they start spoon feeding cuz she picked up on it like nothing! Lily was started on enzymes at 2 weeks old (she wasn't able to feed until then).
So they will usually get a really good reading on what is going on all the way up until delivery.
I wish you luck and hope everything turns out well!!!! They are little fighters!!! and you guys will give him all the love he needs to fight and grow!

 

[xstefani3x]

Hi. I also want to congratulate you on your son. When i was pregnant with Lily (who is now 3), i didn't even really understand what CF is but she was having all hte markers for it. I got tested, and found out i was a carrier the night i went in to have her.
Basically, they can't induce labor to avoid surgery (or from what my experience was and several others). Lily was born with a meconium ilius (i can't remember how far along i was when they saw it), but i also kept having ultrasounds every week to keep an eye on it. Finaly at about 38 weeks my doctor had me called in to induce labor because he was afraid she would be half way out .. and that her belly would be to big and so she would be stuck... lovely picture, i know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I ended up being lucky because when i got there ( i had been being watched very closely cuz i was about to go on my own anyway), she was already on her way out. So that was hte lucky part.
The sad part is after she came out they did all their tests, did a barium enema to check on it (all in an hour of her being in the world) and decided that they would wait 24 hours to see if she could pass it by herself. Everything else was normal, and her scores were great! It was my first time and everything went as smooth as a whistle.
Then the next day she still didn't pass so they decided to send her to Syracuase (which is about 2 hours from me) for surgery. Oh boy.. what a night...
She went up to the Nicu, they did it the next morning, and then it was just waiting. And waiting.. and waiting.. i won't go into all the drama.
Anyway, newborns can eat applesauce from day 1. No problem... i think it helps them when they start spoon feeding cuz she picked up on it like nothing! Lily was started on enzymes at 2 weeks old (she wasn't able to feed until then).
So they will usually get a really good reading on what is going on all the way up until delivery.
I wish you luck and hope everything turns out well!!!! They are little fighters!!! and you guys will give him all the love he needs to fight and grow!

 

[xstefani3x]

Hi. I also want to congratulate you on your son. When i was pregnant with Lily (who is now 3), i didn't even really understand what CF is but she was having all hte markers for it. I got tested, and found out i was a carrier the night i went in to have her.
Basically, they can't induce labor to avoid surgery (or from what my experience was and several others). Lily was born with a meconium ilius (i can't remember how far along i was when they saw it), but i also kept having ultrasounds every week to keep an eye on it. Finaly at about 38 weeks my doctor had me called in to induce labor because he was afraid she would be half way out .. and that her belly would be to big and so she would be stuck... lovely picture, i know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I ended up being lucky because when i got there ( i had been being watched very closely cuz i was about to go on my own anyway), she was already on her way out. So that was hte lucky part.
The sad part is after she came out they did all their tests, did a barium enema to check on it (all in an hour of her being in the world) and decided that they would wait 24 hours to see if she could pass it by herself. Everything else was normal, and her scores were great! It was my first time and everything went as smooth as a whistle.
Then the next day she still didn't pass so they decided to send her to Syracuase (which is about 2 hours from me) for surgery. Oh boy.. what a night...
She went up to the Nicu, they did it the next morning, and then it was just waiting. And waiting.. and waiting.. i won't go into all the drama.
Anyway, newborns can eat applesauce from day 1. No problem... i think it helps them when they start spoon feeding cuz she picked up on it like nothing! Lily was started on enzymes at 2 weeks old (she wasn't able to feed until then).
So they will usually get a really good reading on what is going on all the way up until delivery.
I wish you luck and hope everything turns out well!!!! They are little fighters!!! and you guys will give him all the love he needs to fight and grow!

 

[fourkidsmom]

Welcome to the site & congratulations on the coming of your little boy! You will find he will be an extra special blessing and you will adapt with the diagnosis of CF. You are on your way with being a member on this site.

My son was diagnosed when I was 7 months pregnant, so I can relate to you. As far as your questions. #2 My son had the blockage and it was seen on ultrasound when I was 7 months pregnant. So I highly suggest the ultrasounds you are getting. Remember I think it is like 15% of the CF births have the meconium ilius. So just keep on top of the ultrasounds and hopefully everything will go ok for the baby. I had to deliver C-section because of the blockage, but they kept him inside for as long as possible. They took him at 35 weeks. #3 as far as a newborn eating applesauce. My son didn't eat by mouth for a while because of the surgery, but when he did, he did not have any problems with eating the applesauce and enzymes together. I did breastfeed him the first 6 months and I really believe that is something benefical you can do for the baby.

Good luck and keep in touch.
Fourkidsmom

 

[fourkidsmom]

Welcome to the site & congratulations on the coming of your little boy! You will find he will be an extra special blessing and you will adapt with the diagnosis of CF. You are on your way with being a member on this site.

My son was diagnosed when I was 7 months pregnant, so I can relate to you. As far as your questions. #2 My son had the blockage and it was seen on ultrasound when I was 7 months pregnant. So I highly suggest the ultrasounds you are getting. Remember I think it is like 15% of the CF births have the meconium ilius. So just keep on top of the ultrasounds and hopefully everything will go ok for the baby. I had to deliver C-section because of the blockage, but they kept him inside for as long as possible. They took him at 35 weeks. #3 as far as a newborn eating applesauce. My son didn't eat by mouth for a while because of the surgery, but when he did, he did not have any problems with eating the applesauce and enzymes together. I did breastfeed him the first 6 months and I really believe that is something benefical you can do for the baby.

Good luck and keep in touch.
Fourkidsmom

 

[fourkidsmom]

Welcome to the site & congratulations on the coming of your little boy! You will find he will be an extra special blessing and you will adapt with the diagnosis of CF. You are on your way with being a member on this site.

My son was diagnosed when I was 7 months pregnant, so I can relate to you. As far as your questions. #2 My son had the blockage and it was seen on ultrasound when I was 7 months pregnant. So I highly suggest the ultrasounds you are getting. Remember I think it is like 15% of the CF births have the meconium ilius. So just keep on top of the ultrasounds and hopefully everything will go ok for the baby. I had to deliver C-section because of the blockage, but they kept him inside for as long as possible. They took him at 35 weeks. #3 as far as a newborn eating applesauce. My son didn't eat by mouth for a while because of the surgery, but when he did, he did not have any problems with eating the applesauce and enzymes together. I did breastfeed him the first 6 months and I really believe that is something benefical you can do for the baby.

Good luck and keep in touch.
Fourkidsmom

 

[fourkidsmom]

Welcome to the site & congratulations on the coming of your little boy! You will find he will be an extra special blessing and you will adapt with the diagnosis of CF. You are on your way with being a member on this site.

My son was diagnosed when I was 7 months pregnant, so I can relate to you. As far as your questions. #2 My son had the blockage and it was seen on ultrasound when I was 7 months pregnant. So I highly suggest the ultrasounds you are getting. Remember I think it is like 15% of the CF births have the meconium ilius. So just keep on top of the ultrasounds and hopefully everything will go ok for the baby. I had to deliver C-section because of the blockage, but they kept him inside for as long as possible. They took him at 35 weeks. #3 as far as a newborn eating applesauce. My son didn't eat by mouth for a while because of the surgery, but when he did, he did not have any problems with eating the applesauce and enzymes together. I did breastfeed him the first 6 months and I really believe that is something benefical you can do for the baby.

Good luck and keep in touch.
Fourkidsmom

 

[fourkidsmom]

Welcome to the site & congratulations on the coming of your little boy! You will find he will be an extra special blessing and you will adapt with the diagnosis of CF. You are on your way with being a member on this site.

My son was diagnosed when I was 7 months pregnant, so I can relate to you. As far as your questions. #2 My son had the blockage and it was seen on ultrasound when I was 7 months pregnant. So I highly suggest the ultrasounds you are getting. Remember I think it is like 15% of the CF births have the meconium ilius. So just keep on top of the ultrasounds and hopefully everything will go ok for the baby. I had to deliver C-section because of the blockage, but they kept him inside for as long as possible. They took him at 35 weeks. #3 as far as a newborn eating applesauce. My son didn't eat by mouth for a while because of the surgery, but when he did, he did not have any problems with eating the applesauce and enzymes together. I did breastfeed him the first 6 months and I really believe that is something benefical you can do for the baby.

Good luck and keep in touch.
Fourkidsmom