Preparing family

S

SJCmoon

New member
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. 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.
 
S

SJCmoon

New member
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. 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.
 
S

SJCmoon

New member
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. 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.
 
S

SJCmoon

New member
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. 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.
 
S

SJCmoon

New member
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. 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.
 
B

braydenzmom

Guest
hello there. and welcome to the site. i am glad you found us. i am a 22 year old mom to be. my little brayden is due november 19th, and we found out at about 24 weeks through amniocentesis that he has CF. my fiance and i are young, and had no clue even what CF was. so instead of locking myself in my room for the last few months ive taken the time to line up and excellent pediatrician, and to meet with our local CF center. everyone has been amazing. our little one has been monitored every 3 weeks since the diagnosis to check on his bowels. everything has been clear, thank god. our perinatologist wants to see us one more time before i deliever to make sure everything is still looking normal. so to answer your question, yes im pretty sure they can detect by ultrasound if your babies bowels will be blocked and need surgery. im not sure about being induced to help avoid surgery, it has never been mentioned to us. i was also curious about how you would get a newborn to eat applesauce...but from what they told me, its not difficult. we were also told that theres a good chance that brayden will be pancreatic sufficient thanks to my fiances gene. i carry DELTAF508, my fiance carried R117H-7T. pancreatic sufficiency is linked to the R117-H gene. what are your babies specific mutations? all i can say is, do ALL the research you can and educate yourself as much as possible before your baby is born. i thank god every day we found out BEFORE he was born, so we can begin treatment from day 1. i wish you all the best of luck with your little bundle. hope i have been of some help. i know how lonely it feels at times. i think youll find this website to be VERY helpful. lots of love & luck...jessica & brayden x0x0x
 
B

braydenzmom

Guest
hello there. and welcome to the site. i am glad you found us. i am a 22 year old mom to be. my little brayden is due november 19th, and we found out at about 24 weeks through amniocentesis that he has CF. my fiance and i are young, and had no clue even what CF was. so instead of locking myself in my room for the last few months ive taken the time to line up and excellent pediatrician, and to meet with our local CF center. everyone has been amazing. our little one has been monitored every 3 weeks since the diagnosis to check on his bowels. everything has been clear, thank god. our perinatologist wants to see us one more time before i deliever to make sure everything is still looking normal. so to answer your question, yes im pretty sure they can detect by ultrasound if your babies bowels will be blocked and need surgery. im not sure about being induced to help avoid surgery, it has never been mentioned to us. i was also curious about how you would get a newborn to eat applesauce...but from what they told me, its not difficult. we were also told that theres a good chance that brayden will be pancreatic sufficient thanks to my fiances gene. i carry DELTAF508, my fiance carried R117H-7T. pancreatic sufficiency is linked to the R117-H gene. what are your babies specific mutations? all i can say is, do ALL the research you can and educate yourself as much as possible before your baby is born. i thank god every day we found out BEFORE he was born, so we can begin treatment from day 1. i wish you all the best of luck with your little bundle. hope i have been of some help. i know how lonely it feels at times. i think youll find this website to be VERY helpful. lots of love & luck...jessica & brayden x0x0x
 
B

braydenzmom

Guest
hello there. and welcome to the site. i am glad you found us. i am a 22 year old mom to be. my little brayden is due november 19th, and we found out at about 24 weeks through amniocentesis that he has CF. my fiance and i are young, and had no clue even what CF was. so instead of locking myself in my room for the last few months ive taken the time to line up and excellent pediatrician, and to meet with our local CF center. everyone has been amazing. our little one has been monitored every 3 weeks since the diagnosis to check on his bowels. everything has been clear, thank god. our perinatologist wants to see us one more time before i deliever to make sure everything is still looking normal. so to answer your question, yes im pretty sure they can detect by ultrasound if your babies bowels will be blocked and need surgery. im not sure about being induced to help avoid surgery, it has never been mentioned to us. i was also curious about how you would get a newborn to eat applesauce...but from what they told me, its not difficult. we were also told that theres a good chance that brayden will be pancreatic sufficient thanks to my fiances gene. i carry DELTAF508, my fiance carried R117H-7T. pancreatic sufficiency is linked to the R117-H gene. what are your babies specific mutations? all i can say is, do ALL the research you can and educate yourself as much as possible before your baby is born. i thank god every day we found out BEFORE he was born, so we can begin treatment from day 1. i wish you all the best of luck with your little bundle. hope i have been of some help. i know how lonely it feels at times. i think youll find this website to be VERY helpful. lots of love & luck...jessica & brayden x0x0x
 
B

braydenzmom

Guest
hello there. and welcome to the site. i am glad you found us. i am a 22 year old mom to be. my little brayden is due november 19th, and we found out at about 24 weeks through amniocentesis that he has CF. my fiance and i are young, and had no clue even what CF was. so instead of locking myself in my room for the last few months ive taken the time to line up and excellent pediatrician, and to meet with our local CF center. everyone has been amazing. our little one has been monitored every 3 weeks since the diagnosis to check on his bowels. everything has been clear, thank god. our perinatologist wants to see us one more time before i deliever to make sure everything is still looking normal. so to answer your question, yes im pretty sure they can detect by ultrasound if your babies bowels will be blocked and need surgery. im not sure about being induced to help avoid surgery, it has never been mentioned to us. i was also curious about how you would get a newborn to eat applesauce...but from what they told me, its not difficult. we were also told that theres a good chance that brayden will be pancreatic sufficient thanks to my fiances gene. i carry DELTAF508, my fiance carried R117H-7T. pancreatic sufficiency is linked to the R117-H gene. what are your babies specific mutations? all i can say is, do ALL the research you can and educate yourself as much as possible before your baby is born. i thank god every day we found out BEFORE he was born, so we can begin treatment from day 1. i wish you all the best of luck with your little bundle. hope i have been of some help. i know how lonely it feels at times. i think youll find this website to be VERY helpful. lots of love & luck...jessica & brayden x0x0x
 
B

braydenzmom

Guest
hello there. and welcome to the site. i am glad you found us. i am a 22 year old mom to be. my little brayden is due november 19th, and we found out at about 24 weeks through amniocentesis that he has CF. my fiance and i are young, and had no clue even what CF was. so instead of locking myself in my room for the last few months ive taken the time to line up and excellent pediatrician, and to meet with our local CF center. everyone has been amazing. our little one has been monitored every 3 weeks since the diagnosis to check on his bowels. everything has been clear, thank god. our perinatologist wants to see us one more time before i deliever to make sure everything is still looking normal. so to answer your question, yes im pretty sure they can detect by ultrasound if your babies bowels will be blocked and need surgery. im not sure about being induced to help avoid surgery, it has never been mentioned to us. i was also curious about how you would get a newborn to eat applesauce...but from what they told me, its not difficult. we were also told that theres a good chance that brayden will be pancreatic sufficient thanks to my fiances gene. i carry DELTAF508, my fiance carried R117H-7T. pancreatic sufficiency is linked to the R117-H gene. what are your babies specific mutations? all i can say is, do ALL the research you can and educate yourself as much as possible before your baby is born. i thank god every day we found out BEFORE he was born, so we can begin treatment from day 1. i wish you all the best of luck with your little bundle. hope i have been of some help. i know how lonely it feels at times. i think youll find this website to be VERY helpful. lots of love & luck...jessica & brayden x0x0x
 
M

Mommafirst

Guest
Welcome out of lurkdom!!!

you asked:

1) Is there a possibility of his birth being induced to help avoid surgery? <b>I'd talk to your doctor, but honestly inductions are more likely to cause you to HAVE surgery. Birth and normal labor won't increase your sons chances of having meconium illeus.</b>

2) Is there anyway that the doctors could tell ahead of time if surgery is needed? <b>Yes and no. Wish it were a more simple answer. I'd definitely think that since they are knowing what they are looking for they can see an echogenic bowel through ultrasounds. But whether that meconium illeus (MI) will need surgery will be uncertain until he is born. My daughter was born with MI. It was a surprise, CF was a surprise. I had had TONS of ultrasounds in my last trimester because I was being closely watched for my placenta. No one ever picked up an echogenic bowel. The good news, though, is that her MI was able to be dislodged from a barium enema and did not require surgery. Bottom line, you can do everything you can to know and prepare, and yet you still might not know. </b>

3) Can a newborn "eat" applesauce to take enzymes? How? <b>The amount of applesauce you'll need to get the baby to take the enzymes is pretty small. It may take some learning in the beginning, but you will both figure it out.</b>

I hope this helps!! Welcome again to the forums!
 
M

Mommafirst

Guest
Welcome out of lurkdom!!!

you asked:

1) Is there a possibility of his birth being induced to help avoid surgery? <b>I'd talk to your doctor, but honestly inductions are more likely to cause you to HAVE surgery. Birth and normal labor won't increase your sons chances of having meconium illeus.</b>

2) Is there anyway that the doctors could tell ahead of time if surgery is needed? <b>Yes and no. Wish it were a more simple answer. I'd definitely think that since they are knowing what they are looking for they can see an echogenic bowel through ultrasounds. But whether that meconium illeus (MI) will need surgery will be uncertain until he is born. My daughter was born with MI. It was a surprise, CF was a surprise. I had had TONS of ultrasounds in my last trimester because I was being closely watched for my placenta. No one ever picked up an echogenic bowel. The good news, though, is that her MI was able to be dislodged from a barium enema and did not require surgery. Bottom line, you can do everything you can to know and prepare, and yet you still might not know. </b>

3) Can a newborn "eat" applesauce to take enzymes? How? <b>The amount of applesauce you'll need to get the baby to take the enzymes is pretty small. It may take some learning in the beginning, but you will both figure it out.</b>

I hope this helps!! Welcome again to the forums!
 
M

Mommafirst

Guest
Welcome out of lurkdom!!!

you asked:

1) Is there a possibility of his birth being induced to help avoid surgery? <b>I'd talk to your doctor, but honestly inductions are more likely to cause you to HAVE surgery. Birth and normal labor won't increase your sons chances of having meconium illeus.</b>

2) Is there anyway that the doctors could tell ahead of time if surgery is needed? <b>Yes and no. Wish it were a more simple answer. I'd definitely think that since they are knowing what they are looking for they can see an echogenic bowel through ultrasounds. But whether that meconium illeus (MI) will need surgery will be uncertain until he is born. My daughter was born with MI. It was a surprise, CF was a surprise. I had had TONS of ultrasounds in my last trimester because I was being closely watched for my placenta. No one ever picked up an echogenic bowel. The good news, though, is that her MI was able to be dislodged from a barium enema and did not require surgery. Bottom line, you can do everything you can to know and prepare, and yet you still might not know. </b>

3) Can a newborn "eat" applesauce to take enzymes? How? <b>The amount of applesauce you'll need to get the baby to take the enzymes is pretty small. It may take some learning in the beginning, but you will both figure it out.</b>

I hope this helps!! Welcome again to the forums!
 
M

Mommafirst

Guest
Welcome out of lurkdom!!!

you asked:

1) Is there a possibility of his birth being induced to help avoid surgery? <b>I'd talk to your doctor, but honestly inductions are more likely to cause you to HAVE surgery. Birth and normal labor won't increase your sons chances of having meconium illeus.</b>

2) Is there anyway that the doctors could tell ahead of time if surgery is needed? <b>Yes and no. Wish it were a more simple answer. I'd definitely think that since they are knowing what they are looking for they can see an echogenic bowel through ultrasounds. But whether that meconium illeus (MI) will need surgery will be uncertain until he is born. My daughter was born with MI. It was a surprise, CF was a surprise. I had had TONS of ultrasounds in my last trimester because I was being closely watched for my placenta. No one ever picked up an echogenic bowel. The good news, though, is that her MI was able to be dislodged from a barium enema and did not require surgery. Bottom line, you can do everything you can to know and prepare, and yet you still might not know. </b>

3) Can a newborn "eat" applesauce to take enzymes? How? <b>The amount of applesauce you'll need to get the baby to take the enzymes is pretty small. It may take some learning in the beginning, but you will both figure it out.</b>

I hope this helps!! Welcome again to the forums!
 
M

Mommafirst

Guest
Welcome out of lurkdom!!!

you asked:

1) Is there a possibility of his birth being induced to help avoid surgery? <b>I'd talk to your doctor, but honestly inductions are more likely to cause you to HAVE surgery. Birth and normal labor won't increase your sons chances of having meconium illeus.</b>

2) Is there anyway that the doctors could tell ahead of time if surgery is needed? <b>Yes and no. Wish it were a more simple answer. I'd definitely think that since they are knowing what they are looking for they can see an echogenic bowel through ultrasounds. But whether that meconium illeus (MI) will need surgery will be uncertain until he is born. My daughter was born with MI. It was a surprise, CF was a surprise. I had had TONS of ultrasounds in my last trimester because I was being closely watched for my placenta. No one ever picked up an echogenic bowel. The good news, though, is that her MI was able to be dislodged from a barium enema and did not require surgery. Bottom line, you can do everything you can to know and prepare, and yet you still might not know. </b>

3) Can a newborn "eat" applesauce to take enzymes? How? <b>The amount of applesauce you'll need to get the baby to take the enzymes is pretty small. It may take some learning in the beginning, but you will both figure it out.</b>

I hope this helps!! Welcome again to the forums!
 
A

Alyssa

New member
Heather did a wonderful job of answering here and I'm going to go out on a limb for my answers and ask that anyone correct me if I'm wrong, because I DID NOT deal with this with my kids - I'm stating what I think is correct.


Anyway.... with regard to your inducing delivery to avoid surgery question.... to answer exactly what you asked.... No, they wouldn't induce to avoid a surgery -- but to approach your question from a different angle.... yes, they might induce to avoid a perforated bowel.... <b>IF</b> they see there is a blockage, they will watch it via ultrasound... if it looks like it is getting too big before your due date they would consider inducing so that they could do the surgery for the blockage <b>before</b> any damage is done by the blockage. Does that make sense?
 
A

Alyssa

New member
Heather did a wonderful job of answering here and I'm going to go out on a limb for my answers and ask that anyone correct me if I'm wrong, because I DID NOT deal with this with my kids - I'm stating what I think is correct.


Anyway.... with regard to your inducing delivery to avoid surgery question.... to answer exactly what you asked.... No, they wouldn't induce to avoid a surgery -- but to approach your question from a different angle.... yes, they might induce to avoid a perforated bowel.... <b>IF</b> they see there is a blockage, they will watch it via ultrasound... if it looks like it is getting too big before your due date they would consider inducing so that they could do the surgery for the blockage <b>before</b> any damage is done by the blockage. Does that make sense?
 
A

Alyssa

New member
Heather did a wonderful job of answering here and I'm going to go out on a limb for my answers and ask that anyone correct me if I'm wrong, because I DID NOT deal with this with my kids - I'm stating what I think is correct.


Anyway.... with regard to your inducing delivery to avoid surgery question.... to answer exactly what you asked.... No, they wouldn't induce to avoid a surgery -- but to approach your question from a different angle.... yes, they might induce to avoid a perforated bowel.... <b>IF</b> they see there is a blockage, they will watch it via ultrasound... if it looks like it is getting too big before your due date they would consider inducing so that they could do the surgery for the blockage <b>before</b> any damage is done by the blockage. Does that make sense?
 
A

Alyssa

New member
Heather did a wonderful job of answering here and I'm going to go out on a limb for my answers and ask that anyone correct me if I'm wrong, because I DID NOT deal with this with my kids - I'm stating what I think is correct.


Anyway.... with regard to your inducing delivery to avoid surgery question.... to answer exactly what you asked.... No, they wouldn't induce to avoid a surgery -- but to approach your question from a different angle.... yes, they might induce to avoid a perforated bowel.... <b>IF</b> they see there is a blockage, they will watch it via ultrasound... if it looks like it is getting too big before your due date they would consider inducing so that they could do the surgery for the blockage <b>before</b> any damage is done by the blockage. Does that make sense?
 
A

Alyssa

New member
Heather did a wonderful job of answering here and I'm going to go out on a limb for my answers and ask that anyone correct me if I'm wrong, because I DID NOT deal with this with my kids - I'm stating what I think is correct.


Anyway.... with regard to your inducing delivery to avoid surgery question.... to answer exactly what you asked.... No, they wouldn't induce to avoid a surgery -- but to approach your question from a different angle.... yes, they might induce to avoid a perforated bowel.... <b>IF</b> they see there is a blockage, they will watch it via ultrasound... if it looks like it is getting too big before your due date they would consider inducing so that they could do the surgery for the blockage <b>before</b> any damage is done by the blockage. Does that make sense?
 
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