Hi... my daughter Maggie is only one so I don't have the experience that many other moms on here have. But I will let you know that despite being DDF508 which I've been told is a more severe mutation she is so far doing well. She has yet to even have a cold or cough. She takes salt, vitamins and zantac twice daily as well as twice daily chest pt and enzymes with each feeding. These things have become so normal to us that we don't even really notice doing them anymore. We put on baby einstein for pt and she's fine. She goes to clinic monthly with this next one being the last monthly visit as she will start her quarterly visits. I've learned that schools are very cooperative - i've met many parents who say that their schools do a great job with hand sanitizer and all the necessary precautions. So far it hasn't been too hard. I had to stop working (dr. instructed against daycare) but that was fine with me anyway. My mother is close by so that helps too. You will definately need a support system. I just take one day at a time. I know that CF is progressive and it will probably get harder with time. But so far we are doing well and you will suprise yourself at how well you will do too.
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Prenatal diagnosis for CF
- Thread starter flipper711
- Start date
Hi... my daughter Maggie is only one so I don't have the experience that many other moms on here have. But I will let you know that despite being DDF508 which I've been told is a more severe mutation she is so far doing well. She has yet to even have a cold or cough. She takes salt, vitamins and zantac twice daily as well as twice daily chest pt and enzymes with each feeding. These things have become so normal to us that we don't even really notice doing them anymore. We put on baby einstein for pt and she's fine. She goes to clinic monthly with this next one being the last monthly visit as she will start her quarterly visits. I've learned that schools are very cooperative - i've met many parents who say that their schools do a great job with hand sanitizer and all the necessary precautions. So far it hasn't been too hard. I had to stop working (dr. instructed against daycare) but that was fine with me anyway. My mother is close by so that helps too. You will definately need a support system. I just take one day at a time. I know that CF is progressive and it will probably get harder with time. But so far we are doing well and you will suprise yourself at how well you will do too.
Hi... my daughter Maggie is only one so I don't have the experience that many other moms on here have. But I will let you know that despite being DDF508 which I've been told is a more severe mutation she is so far doing well. She has yet to even have a cold or cough. She takes salt, vitamins and zantac twice daily as well as twice daily chest pt and enzymes with each feeding. These things have become so normal to us that we don't even really notice doing them anymore. We put on baby einstein for pt and she's fine. She goes to clinic monthly with this next one being the last monthly visit as she will start her quarterly visits. I've learned that schools are very cooperative - i've met many parents who say that their schools do a great job with hand sanitizer and all the necessary precautions. So far it hasn't been too hard. I had to stop working (dr. instructed against daycare) but that was fine with me anyway. My mother is close by so that helps too. You will definately need a support system. I just take one day at a time. I know that CF is progressive and it will probably get harder with time. But so far we are doing well and you will suprise yourself at how well you will do too.
Hi... my daughter Maggie is only one so I don't have the experience that many other moms on here have. But I will let you know that despite being DDF508 which I've been told is a more severe mutation she is so far doing well. She has yet to even have a cold or cough. She takes salt, vitamins and zantac twice daily as well as twice daily chest pt and enzymes with each feeding. These things have become so normal to us that we don't even really notice doing them anymore. We put on baby einstein for pt and she's fine. She goes to clinic monthly with this next one being the last monthly visit as she will start her quarterly visits. I've learned that schools are very cooperative - i've met many parents who say that their schools do a great job with hand sanitizer and all the necessary precautions. So far it hasn't been too hard. I had to stop working (dr. instructed against daycare) but that was fine with me anyway. My mother is close by so that helps too. You will definately need a support system. I just take one day at a time. I know that CF is progressive and it will probably get harder with time. But so far we are doing well and you will suprise yourself at how well you will do too.
Hi... my daughter Maggie is only one so I don't have the experience that many other moms on here have. But I will let you know that despite being DDF508 which I've been told is a more severe mutation she is so far doing well. She has yet to even have a cold or cough. She takes salt, vitamins and zantac twice daily as well as twice daily chest pt and enzymes with each feeding. These things have become so normal to us that we don't even really notice doing them anymore. We put on baby einstein for pt and she's fine. She goes to clinic monthly with this next one being the last monthly visit as she will start her quarterly visits. I've learned that schools are very cooperative - i've met many parents who say that their schools do a great job with hand sanitizer and all the necessary precautions. So far it hasn't been too hard. I had to stop working (dr. instructed against daycare) but that was fine with me anyway. My mother is close by so that helps too. You will definately need a support system. I just take one day at a time. I know that CF is progressive and it will probably get harder with time. But so far we are doing well and you will suprise yourself at how well you will do too.
debs2girls
New member
Welcome Flipper, I love the name by the way. I am sorry you have a need for this place but at the same, grateful it is here. Our story is different than the others here. While you are no doubt reeling from the news, you have it from the beginning and can research, ask questions and be prepared. Our daughter wasnt diagnosed until after she turned 5. Yes, she always had problems..the list continues to grow. We had the same reaction (I am sure) that you are having now. Unfortunately for our daughter, there was/is major damage to her lungs that may have been avoided or at least prolonged, if she had the proper medicine/treatments from the beginning.
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
debs2girls
New member
Welcome Flipper, I love the name by the way. I am sorry you have a need for this place but at the same, grateful it is here. Our story is different than the others here. While you are no doubt reeling from the news, you have it from the beginning and can research, ask questions and be prepared. Our daughter wasnt diagnosed until after she turned 5. Yes, she always had problems..the list continues to grow. We had the same reaction (I am sure) that you are having now. Unfortunately for our daughter, there was/is major damage to her lungs that may have been avoided or at least prolonged, if she had the proper medicine/treatments from the beginning.
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
debs2girls
New member
Welcome Flipper, I love the name by the way. I am sorry you have a need for this place but at the same, grateful it is here. Our story is different than the others here. While you are no doubt reeling from the news, you have it from the beginning and can research, ask questions and be prepared. Our daughter wasnt diagnosed until after she turned 5. Yes, she always had problems..the list continues to grow. We had the same reaction (I am sure) that you are having now. Unfortunately for our daughter, there was/is major damage to her lungs that may have been avoided or at least prolonged, if she had the proper medicine/treatments from the beginning.
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
debs2girls
New member
Welcome Flipper, I love the name by the way. I am sorry you have a need for this place but at the same, grateful it is here. Our story is different than the others here. While you are no doubt reeling from the news, you have it from the beginning and can research, ask questions and be prepared. Our daughter wasnt diagnosed until after she turned 5. Yes, she always had problems..the list continues to grow. We had the same reaction (I am sure) that you are having now. Unfortunately for our daughter, there was/is major damage to her lungs that may have been avoided or at least prolonged, if she had the proper medicine/treatments from the beginning.
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
debs2girls
New member
Welcome Flipper, I love the name by the way. I am sorry you have a need for this place but at the same, grateful it is here. Our story is different than the others here. While you are no doubt reeling from the news, you have it from the beginning and can research, ask questions and be prepared. Our daughter wasnt diagnosed until after she turned 5. Yes, she always had problems..the list continues to grow. We had the same reaction (I am sure) that you are having now. Unfortunately for our daughter, there was/is major damage to her lungs that may have been avoided or at least prolonged, if she had the proper medicine/treatments from the beginning.
<br />Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
<br />
<br />You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
<br />
<br />
<br />Every cf case is different, as is every child..whether sick or not. Take it one day at a time...above all, treasure every crazy minute!!!
<br />
<br />You can read our caring bridge if you want to know more about my daughter. www.caringbridge.org/visit/ambercheyennelong
<br />
<br />
flipper711
New member
I cannot begin to THANK all of you enough. This has been very tough and emotional for both of us. I am very anxious to share your comments with my husband so we can both start processing this better. There are times I/we feel overwhelmed with the knowledge but also feel very fortunate to have the time to be proactive and have plans in place. I am also very thankful for the opportunity to prepare our son in advance. As one of you suggested, it gives us the ability to get him involved from the very start...I know he will be very compassionate and willing to help.
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
flipper711
New member
I cannot begin to THANK all of you enough. This has been very tough and emotional for both of us. I am very anxious to share your comments with my husband so we can both start processing this better. There are times I/we feel overwhelmed with the knowledge but also feel very fortunate to have the time to be proactive and have plans in place. I am also very thankful for the opportunity to prepare our son in advance. As one of you suggested, it gives us the ability to get him involved from the very start...I know he will be very compassionate and willing to help.
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
flipper711
New member
I cannot begin to THANK all of you enough. This has been very tough and emotional for both of us. I am very anxious to share your comments with my husband so we can both start processing this better. There are times I/we feel overwhelmed with the knowledge but also feel very fortunate to have the time to be proactive and have plans in place. I am also very thankful for the opportunity to prepare our son in advance. As one of you suggested, it gives us the ability to get him involved from the very start...I know he will be very compassionate and willing to help.
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
flipper711
New member
I cannot begin to THANK all of you enough. This has been very tough and emotional for both of us. I am very anxious to share your comments with my husband so we can both start processing this better. There are times I/we feel overwhelmed with the knowledge but also feel very fortunate to have the time to be proactive and have plans in place. I am also very thankful for the opportunity to prepare our son in advance. As one of you suggested, it gives us the ability to get him involved from the very start...I know he will be very compassionate and willing to help.
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
Some of you asked some questions so I am going to attempt to address them with a little background.
We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
I will check in again soon and give an update after we have our meeting with the doctor.
Thank you and God Bless
flipper711
New member
I cannot begin to THANK all of you enough. This has been very tough and emotional for both of us. I am very anxious to share your comments with my husband so we can both start processing this better. There are times I/we feel overwhelmed with the knowledge but also feel very fortunate to have the time to be proactive and have plans in place. I am also very thankful for the opportunity to prepare our son in advance. As one of you suggested, it gives us the ability to get him involved from the very start...I know he will be very compassionate and willing to help.
<br />
<br />Some of you asked some questions so I am going to attempt to address them with a little background.
<br />
<br />We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
<br />
<br />We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
<br />
<br />Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
<br />
<br />We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
<br />
<br />The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
<br />
<br />I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
<br />
<br />I will check in again soon and give an update after we have our meeting with the doctor.
<br />Thank you and God Bless
<br />
<br />
<br />
<br />Some of you asked some questions so I am going to attempt to address them with a little background.
<br />
<br />We experienced a miscarriage 2 1/2 years ago around 11 weeks. I believe it was sooner but it was not confirmed until then. It was during that prenatal bloodwork that we found out I was a carrier. My husband then tested positive, as well. We have an 8 year old son who shows no signs of CF and has not been tested. Apparently the prenatal screening was not a common practice when I was pregnant with him. Because getting pregnant has always been a challenge for us, we have never bothered to prevent it...I don't think either of us really ever imagined it would happen so really didn't worry about the CF issue. So we had just discussed looking into permanent birth control options not more than a week or so before we realized I was pregnant. I am 38 years old and we just celebrated our 10 year anniversary. We decided we were done...God laughed and said I don't think so!
<br />
<br />We were initially so concerned about another miscarriage that neither of us even thought about the CF issue until our first OB appointment at 8 weeks. It was then that we decided to look into the CVS test. We knew there was a little more risk but we didn't want to wait until an amnio at 16 weeks. We got a great recommendation for a Genzyme counselor and an experienced doctor to do the CVS. The procedure was very easy (we were able to do the test vaginally) and very little discomfort...I've had pelvic exams that were much worse! I choose not to watch the procedure because I was afraid I might tense up or something. My husband watched the entire thing. I asked for the DVD...of course the dr and nurse laughed and said, that's a first! I try to find humor wherever I can!
<br />
<br />Our first response back from the lab was the report on the chromosomes...everything was normal. HUGE sigh of relief and we were feeling really good about our chances of another good phone call. Then we got the call from Genzyme two days later that we had a positive result for CF.
<br />
<br />We have been so fortunate to have great doctors around us who are very willing to get us any information we want. We have been in contact with the Care Center in our area and they in turn set up our meeting this Friday with a pediatric pulmonolgist who specializes in CF. The doctor specifically gave us a time when she didn't have any appointments following so she could spend as much time answering our questions as we needed. We have a very long list already compiled! (any suggestions for questions are greatly welcomed!)
<br />
<br />The hospital I will deliver at has a fabulous NICU so that makes me feel better already. They assured me they would work with the Children's Hospital if the necessity to transfer the baby becomes necessary.
<br />
<br />I think each day gets easier but the quiet moments and downtime still make it difficult to keep the emotions in check but I know we will get through this. I thank you all so very much for your kind words of encouragement and for being so honest in sharing your personal stories.
<br />
<br />I will check in again soon and give an update after we have our meeting with the doctor.
<br />Thank you and God Bless
<br />
<br />