totally new to this...

braydenzmom · Oct 12, 2007

This is my first "blog". I was referred to this site by a very nice woman I spoke with on Myspace. I am so glad there is a website like this, because for awhile I was feeling VERY alone. I just turned 22 years old & I'm 34 weeks pregnant with a little boy named Brayden. We found out through amniocentesis that he has CF. I am new to all of this & need some advice. I have already found him a pediatrician & a pediatric pulmonologist at our local CF center. What are some of the things I can come to expect in the first few weeks/months of having him home? Do all CF babies need enzymes? How will they determine whether or not he needs to take them? His specific mutations are DF508/R117H-7T. If anyone has any information I am open to any & all suggestions! Thanks for your time.

braydenzmom · Oct 12, 2007

This is my first "blog". I was referred to this site by a very nice woman I spoke with on Myspace. I am so glad there is a website like this, because for awhile I was feeling VERY alone. I just turned 22 years old & I'm 34 weeks pregnant with a little boy named Brayden. We found out through amniocentesis that he has CF. I am new to all of this & need some advice. I have already found him a pediatrician & a pediatric pulmonologist at our local CF center. What are some of the things I can come to expect in the first few weeks/months of having him home? Do all CF babies need enzymes? How will they determine whether or not he needs to take them? His specific mutations are DF508/R117H-7T. If anyone has any information I am open to any & all suggestions! Thanks for your time.

braydenzmom · Oct 12, 2007

This is my first "blog". I was referred to this site by a very nice woman I spoke with on Myspace. I am so glad there is a website like this, because for awhile I was feeling VERY alone. I just turned 22 years old & I'm 34 weeks pregnant with a little boy named Brayden. We found out through amniocentesis that he has CF. I am new to all of this & need some advice. I have already found him a pediatrician & a pediatric pulmonologist at our local CF center. What are some of the things I can come to expect in the first few weeks/months of having him home? Do all CF babies need enzymes? How will they determine whether or not he needs to take them? His specific mutations are DF508/R117H-7T. If anyone has any information I am open to any & all suggestions! Thanks for your time.

braydenzmom · Oct 12, 2007

This is my first "blog". I was referred to this site by a very nice woman I spoke with on Myspace. I am so glad there is a website like this, because for awhile I was feeling VERY alone. I just turned 22 years old & I'm 34 weeks pregnant with a little boy named Brayden. We found out through amniocentesis that he has CF. I am new to all of this & need some advice. I have already found him a pediatrician & a pediatric pulmonologist at our local CF center. What are some of the things I can come to expect in the first few weeks/months of having him home? Do all CF babies need enzymes? How will they determine whether or not he needs to take them? His specific mutations are DF508/R117H-7T. If anyone has any information I am open to any & all suggestions! Thanks for your time.

braydenzmom · Oct 12, 2007

This is my first "blog". I was referred to this site by a very nice woman I spoke with on Myspace. I am so glad there is a website like this, because for awhile I was feeling VERY alone. I just turned 22 years old & I'm 34 weeks pregnant with a little boy named Brayden. We found out through amniocentesis that he has CF. I am new to all of this & need some advice. I have already found him a pediatrician & a pediatric pulmonologist at our local CF center. What are some of the things I can come to expect in the first few weeks/months of having him home? Do all CF babies need enzymes? How will they determine whether or not he needs to take them? His specific mutations are DF508/R117H-7T. If anyone has any information I am open to any & all suggestions! Thanks for your time.

Mommafirst · Oct 12, 2007

Hi Jessica and welcome. I think that Em (Abbys mom) might be a big help to you. I hope she sees this. I'm pretty sure that those are Abby's mutations too. And Em found out while she was pregnant. Abby is pancreatic sufficient (doesn't need enzymes) and is not showing symptoms. I think she is a year old now. So as I said Em can help you.

But to answer your questions, as frustrating as it is you are going to have a lot of wait and see stuff on your hands. I'm guessing if you already have a CF team they will come to the hospital or want to see Brayden pretty early on and you'll have to see if he is pancreatic sufficient and probably have him tested over time. I'm not gonna lie, it can be maddening waiting for something to happen and not wanting it to at the same time. My daughter was born pancreatic sufficient and is now losing that sufficiency. But we have a good CF team that is on top of things. And you certainly sound to be on top of your situation.

HUGS. I know its lonely. We all know that and that is why we come here to lessen the loneliness and learn a great deal. So welcome to our world.

Mommafirst · Oct 12, 2007

Hi Jessica and welcome. I think that Em (Abbys mom) might be a big help to you. I hope she sees this. I'm pretty sure that those are Abby's mutations too. And Em found out while she was pregnant. Abby is pancreatic sufficient (doesn't need enzymes) and is not showing symptoms. I think she is a year old now. So as I said Em can help you.

But to answer your questions, as frustrating as it is you are going to have a lot of wait and see stuff on your hands. I'm guessing if you already have a CF team they will come to the hospital or want to see Brayden pretty early on and you'll have to see if he is pancreatic sufficient and probably have him tested over time. I'm not gonna lie, it can be maddening waiting for something to happen and not wanting it to at the same time. My daughter was born pancreatic sufficient and is now losing that sufficiency. But we have a good CF team that is on top of things. And you certainly sound to be on top of your situation.

HUGS. I know its lonely. We all know that and that is why we come here to lessen the loneliness and learn a great deal. So welcome to our world.

Mommafirst · Oct 12, 2007

Hi Jessica and welcome. I think that Em (Abbys mom) might be a big help to you. I hope she sees this. I'm pretty sure that those are Abby's mutations too. And Em found out while she was pregnant. Abby is pancreatic sufficient (doesn't need enzymes) and is not showing symptoms. I think she is a year old now. So as I said Em can help you.

But to answer your questions, as frustrating as it is you are going to have a lot of wait and see stuff on your hands. I'm guessing if you already have a CF team they will come to the hospital or want to see Brayden pretty early on and you'll have to see if he is pancreatic sufficient and probably have him tested over time. I'm not gonna lie, it can be maddening waiting for something to happen and not wanting it to at the same time. My daughter was born pancreatic sufficient and is now losing that sufficiency. But we have a good CF team that is on top of things. And you certainly sound to be on top of your situation.

HUGS. I know its lonely. We all know that and that is why we come here to lessen the loneliness and learn a great deal. So welcome to our world.

Mommafirst · Oct 12, 2007

Hi Jessica and welcome. I think that Em (Abbys mom) might be a big help to you. I hope she sees this. I'm pretty sure that those are Abby's mutations too. And Em found out while she was pregnant. Abby is pancreatic sufficient (doesn't need enzymes) and is not showing symptoms. I think she is a year old now. So as I said Em can help you.

But to answer your questions, as frustrating as it is you are going to have a lot of wait and see stuff on your hands. I'm guessing if you already have a CF team they will come to the hospital or want to see Brayden pretty early on and you'll have to see if he is pancreatic sufficient and probably have him tested over time. I'm not gonna lie, it can be maddening waiting for something to happen and not wanting it to at the same time. My daughter was born pancreatic sufficient and is now losing that sufficiency. But we have a good CF team that is on top of things. And you certainly sound to be on top of your situation.

HUGS. I know its lonely. We all know that and that is why we come here to lessen the loneliness and learn a great deal. So welcome to our world.

Mommafirst · Oct 12, 2007

Hi Jessica and welcome. I think that Em (Abbys mom) might be a big help to you. I hope she sees this. I'm pretty sure that those are Abby's mutations too. And Em found out while she was pregnant. Abby is pancreatic sufficient (doesn't need enzymes) and is not showing symptoms. I think she is a year old now. So as I said Em can help you.

But to answer your questions, as frustrating as it is you are going to have a lot of wait and see stuff on your hands. I'm guessing if you already have a CF team they will come to the hospital or want to see Brayden pretty early on and you'll have to see if he is pancreatic sufficient and probably have him tested over time. I'm not gonna lie, it can be maddening waiting for something to happen and not wanting it to at the same time. My daughter was born pancreatic sufficient and is now losing that sufficiency. But we have a good CF team that is on top of things. And you certainly sound to be on top of your situation.

HUGS. I know its lonely. We all know that and that is why we come here to lessen the loneliness and learn a great deal. So welcome to our world.

Buckeye · Oct 12, 2007