Just found out

nicole781

New member
hello everyone, my name's nicole and i'm 25 years old. I'm in my 23rd week of pregnancy, and we just got the call on friday that our little girl had cystic fibrosis. So, i've cried for 2 days, and now i want to know everything that I can do to help her. Is there anything i should be doing to help her before she is born? Is anyone else on here from the Philly area, and can tell me some doctors or places to go? What else should i know? I'm scared, but I want her to be as normal of a little girl as she possibly can, and i'll do anything to make that happen for her.
 

nicole781

New member
hello everyone, my name's nicole and i'm 25 years old. I'm in my 23rd week of pregnancy, and we just got the call on friday that our little girl had cystic fibrosis. So, i've cried for 2 days, and now i want to know everything that I can do to help her. Is there anything i should be doing to help her before she is born? Is anyone else on here from the Philly area, and can tell me some doctors or places to go? What else should i know? I'm scared, but I want her to be as normal of a little girl as she possibly can, and i'll do anything to make that happen for her.
 

nicole781

New member
hello everyone, my name's nicole and i'm 25 years old. I'm in my 23rd week of pregnancy, and we just got the call on friday that our little girl had cystic fibrosis. So, i've cried for 2 days, and now i want to know everything that I can do to help her. Is there anything i should be doing to help her before she is born? Is anyone else on here from the Philly area, and can tell me some doctors or places to go? What else should i know? I'm scared, but I want her to be as normal of a little girl as she possibly can, and i'll do anything to make that happen for her.
 

Debi

New member
May I tell you that you have come to wonderful site to learn the types of information and support you will need for your journey with your cf child? Congratulations on taking that step.

On this site you will discover that there are thousands of experiences with cf. Depending on hundreds of factors, there are children who will breeze through their childhoods with seemingly little difficulty while others struggle. Some have difficult teen years, some do fine until their twenties or thirties. Some have digestive issues, others only lung issues. My personal story is that I have only lung issues that were relatively mild until my late 30's. I am now 54 (55 in about two weeks), and my lungs are in pretty bad shape.

There are drugs and treatments that are available to you that will help improve the quality and length of your child's life. There will certainly be more medical progress throughout your child's lifetime. I'm not going to preduct a cure, but I am hopeful that dramatic improvements will be made in her lifeltime.

You can find advice on how to lead a sterile life to avoid any possibility of germs and you can find advice on how not to become too phobic about germs. You will need to sort out what works best for you. I, personally, do not follow all the germs rules, and I have a had a rich long life.

There is no right or wrong way to lead your life with your cf child. There are studies and statistics that can make your eyes swim. There are arguments that will rage about quality versus quantity of life. At best you try to find the balance that works for your family.

This forum is filled with people of an entire spectrum of experiences and opinions. Some you will agree with, some you won't. That's okay. They all mean well. They're all in this fight together with one common purpose - to eradicate the disease and the challenges that come with it.

I applaud you for beginning your search early. Knowlege is, indeed, power. I urge you to become informed, to have an open mind, to come here often (but remember this is a forum, not the end all and be all of cf), and to become a strong advocate for your daughter and your family. You and you husband alone are in control--don't let the medical world or anyone else bully you into doing anything that doesn't feel right to you.

Despite how it might sound from all you read, cf does not rule every minute of every day. Your daughter will bring you endless hours of fun and joy and hope. Most of the time you will probably forget she has cf. Don't get sucked into any sort of doom and gloom mentality. Enjoy the rest of your pregnancy and then relish the wonderful new family you have created.

Welcome to this site, and I hope we can all be a system of support for you. I look forward to hearing all about your little girl in the months to come!
 

Debi

New member
May I tell you that you have come to wonderful site to learn the types of information and support you will need for your journey with your cf child? Congratulations on taking that step.

On this site you will discover that there are thousands of experiences with cf. Depending on hundreds of factors, there are children who will breeze through their childhoods with seemingly little difficulty while others struggle. Some have difficult teen years, some do fine until their twenties or thirties. Some have digestive issues, others only lung issues. My personal story is that I have only lung issues that were relatively mild until my late 30's. I am now 54 (55 in about two weeks), and my lungs are in pretty bad shape.

There are drugs and treatments that are available to you that will help improve the quality and length of your child's life. There will certainly be more medical progress throughout your child's lifetime. I'm not going to preduct a cure, but I am hopeful that dramatic improvements will be made in her lifeltime.

You can find advice on how to lead a sterile life to avoid any possibility of germs and you can find advice on how not to become too phobic about germs. You will need to sort out what works best for you. I, personally, do not follow all the germs rules, and I have a had a rich long life.

There is no right or wrong way to lead your life with your cf child. There are studies and statistics that can make your eyes swim. There are arguments that will rage about quality versus quantity of life. At best you try to find the balance that works for your family.

This forum is filled with people of an entire spectrum of experiences and opinions. Some you will agree with, some you won't. That's okay. They all mean well. They're all in this fight together with one common purpose - to eradicate the disease and the challenges that come with it.

I applaud you for beginning your search early. Knowlege is, indeed, power. I urge you to become informed, to have an open mind, to come here often (but remember this is a forum, not the end all and be all of cf), and to become a strong advocate for your daughter and your family. You and you husband alone are in control--don't let the medical world or anyone else bully you into doing anything that doesn't feel right to you.

Despite how it might sound from all you read, cf does not rule every minute of every day. Your daughter will bring you endless hours of fun and joy and hope. Most of the time you will probably forget she has cf. Don't get sucked into any sort of doom and gloom mentality. Enjoy the rest of your pregnancy and then relish the wonderful new family you have created.

Welcome to this site, and I hope we can all be a system of support for you. I look forward to hearing all about your little girl in the months to come!
 

Debi

New member
May I tell you that you have come to wonderful site to learn the types of information and support you will need for your journey with your cf child? Congratulations on taking that step.

On this site you will discover that there are thousands of experiences with cf. Depending on hundreds of factors, there are children who will breeze through their childhoods with seemingly little difficulty while others struggle. Some have difficult teen years, some do fine until their twenties or thirties. Some have digestive issues, others only lung issues. My personal story is that I have only lung issues that were relatively mild until my late 30's. I am now 54 (55 in about two weeks), and my lungs are in pretty bad shape.

There are drugs and treatments that are available to you that will help improve the quality and length of your child's life. There will certainly be more medical progress throughout your child's lifetime. I'm not going to preduct a cure, but I am hopeful that dramatic improvements will be made in her lifeltime.

You can find advice on how to lead a sterile life to avoid any possibility of germs and you can find advice on how not to become too phobic about germs. You will need to sort out what works best for you. I, personally, do not follow all the germs rules, and I have a had a rich long life.

There is no right or wrong way to lead your life with your cf child. There are studies and statistics that can make your eyes swim. There are arguments that will rage about quality versus quantity of life. At best you try to find the balance that works for your family.

This forum is filled with people of an entire spectrum of experiences and opinions. Some you will agree with, some you won't. That's okay. They all mean well. They're all in this fight together with one common purpose - to eradicate the disease and the challenges that come with it.

I applaud you for beginning your search early. Knowlege is, indeed, power. I urge you to become informed, to have an open mind, to come here often (but remember this is a forum, not the end all and be all of cf), and to become a strong advocate for your daughter and your family. You and you husband alone are in control--don't let the medical world or anyone else bully you into doing anything that doesn't feel right to you.

Despite how it might sound from all you read, cf does not rule every minute of every day. Your daughter will bring you endless hours of fun and joy and hope. Most of the time you will probably forget she has cf. Don't get sucked into any sort of doom and gloom mentality. Enjoy the rest of your pregnancy and then relish the wonderful new family you have created.

Welcome to this site, and I hope we can all be a system of support for you. I look forward to hearing all about your little girl in the months to come!
 

Rebjane

Super Moderator
Nicole,

I've been in your very shoes. When I was 23 weeks pregnant with my second child i found she had CF via an amniocentesis. My daughter is now 4 years old. I cried and cried , I didn't sleep didn't eat the right foods, I felt so alone, I don't think even my husband could understand how I felt. No one I knew had been through what I was going through at the time. Being pregnant , you are so emotional anyway, but this made me a wreck. I did alot of soul-searching and made alot of changes in my life at the time. A few things i wish i did was take better care of myself, but oh well. The positive side of things is that , you have time to prepare for you baby's arrival. You can find an accredidated CF center, interview pediatrician's and Cf doctor before she is born. make sure you deliver at a large hospital with a NICU and CF center. You can prepare yourself for how you want to feed your baby. Yes, you can breastfeed a child with CF. I did. When I was pregnant, I actually met with a CF doctor before my daughter was born as a consult to ask him all the questions I had about CF. Our health insurance paid for this visit even. try not to get overwhelmed. Also, not all doctors have the current information about CF. You will find there is alot of misinformation. The Cystic Fibrosis Foundation has a website at www.cff.org with reliable information about CF centers , their locations and clinical trials. If you want to see a picture of my beautiful children you can go to our fundraising page at http://www.cff.org/Great_StridesMaggieMurray
 

Rebjane

Super Moderator
Nicole,

I've been in your very shoes. When I was 23 weeks pregnant with my second child i found she had CF via an amniocentesis. My daughter is now 4 years old. I cried and cried , I didn't sleep didn't eat the right foods, I felt so alone, I don't think even my husband could understand how I felt. No one I knew had been through what I was going through at the time. Being pregnant , you are so emotional anyway, but this made me a wreck. I did alot of soul-searching and made alot of changes in my life at the time. A few things i wish i did was take better care of myself, but oh well. The positive side of things is that , you have time to prepare for you baby's arrival. You can find an accredidated CF center, interview pediatrician's and Cf doctor before she is born. make sure you deliver at a large hospital with a NICU and CF center. You can prepare yourself for how you want to feed your baby. Yes, you can breastfeed a child with CF. I did. When I was pregnant, I actually met with a CF doctor before my daughter was born as a consult to ask him all the questions I had about CF. Our health insurance paid for this visit even. try not to get overwhelmed. Also, not all doctors have the current information about CF. You will find there is alot of misinformation. The Cystic Fibrosis Foundation has a website at www.cff.org with reliable information about CF centers , their locations and clinical trials. If you want to see a picture of my beautiful children you can go to our fundraising page at http://www.cff.org/Great_StridesMaggieMurray
 

Rebjane

Super Moderator
Nicole,

I've been in your very shoes. When I was 23 weeks pregnant with my second child i found she had CF via an amniocentesis. My daughter is now 4 years old. I cried and cried , I didn't sleep didn't eat the right foods, I felt so alone, I don't think even my husband could understand how I felt. No one I knew had been through what I was going through at the time. Being pregnant , you are so emotional anyway, but this made me a wreck. I did alot of soul-searching and made alot of changes in my life at the time. A few things i wish i did was take better care of myself, but oh well. The positive side of things is that , you have time to prepare for you baby's arrival. You can find an accredidated CF center, interview pediatrician's and Cf doctor before she is born. make sure you deliver at a large hospital with a NICU and CF center. You can prepare yourself for how you want to feed your baby. Yes, you can breastfeed a child with CF. I did. When I was pregnant, I actually met with a CF doctor before my daughter was born as a consult to ask him all the questions I had about CF. Our health insurance paid for this visit even. try not to get overwhelmed. Also, not all doctors have the current information about CF. You will find there is alot of misinformation. The Cystic Fibrosis Foundation has a website at www.cff.org with reliable information about CF centers , their locations and clinical trials. If you want to see a picture of my beautiful children you can go to our fundraising page at http://www.cff.org/Great_StridesMaggieMurray
 
S

sdelorenzo

Guest
Nicole,
I am sorry about the diagnosis of your daughter. It is very hard to learn during pregnancy because you don't have your precious daughter in your arms yet, just all of the emotions that go along with pregnancy. Your daughter will have a wonderful life despite her diagnosis. I have two children and they both have cf. Their lives are very similar to their friends, (preschool, ballet, gymnastics, swimming, etc).

Send me an e-mail at sdelorenzo@sbcglobal.net and I will send you some info.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Nicole,
I am sorry about the diagnosis of your daughter. It is very hard to learn during pregnancy because you don't have your precious daughter in your arms yet, just all of the emotions that go along with pregnancy. Your daughter will have a wonderful life despite her diagnosis. I have two children and they both have cf. Their lives are very similar to their friends, (preschool, ballet, gymnastics, swimming, etc).

Send me an e-mail at sdelorenzo@sbcglobal.net and I will send you some info.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Nicole,
I am sorry about the diagnosis of your daughter. It is very hard to learn during pregnancy because you don't have your precious daughter in your arms yet, just all of the emotions that go along with pregnancy. Your daughter will have a wonderful life despite her diagnosis. I have two children and they both have cf. Their lives are very similar to their friends, (preschool, ballet, gymnastics, swimming, etc).

Send me an e-mail at sdelorenzo@sbcglobal.net and I will send you some info.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 

NoExcuses

New member
Welcome to the CF world. I'm sorry about your diagnosis, but of all times to have a CF child, this is the best time there's ever been.

If you want to do as much as you can before she is born, I would <b> fundraise </b>. www.cff.org is a great place to start.

Money raised today will go to develop new meds as she grows older. Med development is slow and expensive, so the sooner money is raised, the better.

Welcome to the site. There's a lot that you can do to help your little girl as you'll see <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

New member
Welcome to the CF world. I'm sorry about your diagnosis, but of all times to have a CF child, this is the best time there's ever been.

If you want to do as much as you can before she is born, I would <b> fundraise </b>. www.cff.org is a great place to start.

Money raised today will go to develop new meds as she grows older. Med development is slow and expensive, so the sooner money is raised, the better.

Welcome to the site. There's a lot that you can do to help your little girl as you'll see <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

New member
Welcome to the CF world. I'm sorry about your diagnosis, but of all times to have a CF child, this is the best time there's ever been.

If you want to do as much as you can before she is born, I would <b> fundraise </b>. www.cff.org is a great place to start.

Money raised today will go to develop new meds as she grows older. Med development is slow and expensive, so the sooner money is raised, the better.

Welcome to the site. There's a lot that you can do to help your little girl as you'll see <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Foody

New member
There are some wonderful moms and dads here, each ready to help. We all understand the roller coaster of emotions. You are fortunate to know before birth even though it is so hard to take it all in. There is a neat lady named Emily who is starting a little site called www.expectingCF.com for women who find out prenatally. I have alot of breastfeeding information on my site below (studies and support) and am happy to answer any question you may have along the way.

Our son is doing really well and I know for many of us, aside from preventative lung care, CF is really in the background of life. Once in a while CF asks us to respond, but our children are healthy, vibrant, and full of fire just like you'd hope they would be.

Take you time, learn as you feel you can, and know that we are all here for you. It takes a little while to readjust your vision for your baby...I felt I had to mourn and let go. Eventually acceptance happened, but it takes time and tenderness.

Our hearts are with you in this tender time. We have a little video as well if you want to see our little guy <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/viewpage.php?page_id=2
">http://www.cfnutrition4life.co...iewpage.php?page_id=2
</a>
Warmly,
 

Foody

New member
There are some wonderful moms and dads here, each ready to help. We all understand the roller coaster of emotions. You are fortunate to know before birth even though it is so hard to take it all in. There is a neat lady named Emily who is starting a little site called www.expectingCF.com for women who find out prenatally. I have alot of breastfeeding information on my site below (studies and support) and am happy to answer any question you may have along the way.

Our son is doing really well and I know for many of us, aside from preventative lung care, CF is really in the background of life. Once in a while CF asks us to respond, but our children are healthy, vibrant, and full of fire just like you'd hope they would be.

Take you time, learn as you feel you can, and know that we are all here for you. It takes a little while to readjust your vision for your baby...I felt I had to mourn and let go. Eventually acceptance happened, but it takes time and tenderness.

Our hearts are with you in this tender time. We have a little video as well if you want to see our little guy <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/viewpage.php?page_id=2
">http://www.cfnutrition4life.co...iewpage.php?page_id=2
</a>
Warmly,
 

Foody

New member
There are some wonderful moms and dads here, each ready to help. We all understand the roller coaster of emotions. You are fortunate to know before birth even though it is so hard to take it all in. There is a neat lady named Emily who is starting a little site called www.expectingCF.com for women who find out prenatally. I have alot of breastfeeding information on my site below (studies and support) and am happy to answer any question you may have along the way.

Our son is doing really well and I know for many of us, aside from preventative lung care, CF is really in the background of life. Once in a while CF asks us to respond, but our children are healthy, vibrant, and full of fire just like you'd hope they would be.

Take you time, learn as you feel you can, and know that we are all here for you. It takes a little while to readjust your vision for your baby...I felt I had to mourn and let go. Eventually acceptance happened, but it takes time and tenderness.

Our hearts are with you in this tender time. We have a little video as well if you want to see our little guy <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/cfnu/viewpage.php?page_id=2
">http://www.cfnutrition4life.co...iewpage.php?page_id=2
</a>
Warmly,
 

biz

New member
Hi Nicole, my son is 14 months old and we have been going to Childrens Hospital of Philadelphia since the day we found out they have a CF center in the hospital so your not mixed in with just anybody and we have a CF doctor nurse nutritionist and social worker that we see every visit. we are very happy there. if you would like more info i can answer any questions you may have to the best that i can.



Elizabeth
pround mom of Aidan 14 months w/CF
 

biz

New member
Hi Nicole, my son is 14 months old and we have been going to Childrens Hospital of Philadelphia since the day we found out they have a CF center in the hospital so your not mixed in with just anybody and we have a CF doctor nurse nutritionist and social worker that we see every visit. we are very happy there. if you would like more info i can answer any questions you may have to the best that i can.



Elizabeth
pround mom of Aidan 14 months w/CF
 
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