new baby

J

jdkeep

New member
Hi. I'm new to the site as well. Our son, Brady, was diagnosed with CF when I was pregnant; he is 3 months old now, and he's doing great! He was born small due to a problem with my placenta, and he only weighed 5 lbs. 4 oz. He now weighs over 11 lbs., and we're very happy about that! We were able to prepare ourselves for this life adventure prior to my son arriving, and that did us a lot of good! We did a lot of research, which was very helpful. We don't know anyone that's going through what we are, so we're very glad to have found this website.
I honestly don't know a lot about what to do with a newborn with CF, as I'm still learning myself, but each day is a new day, and we do the very best we can because we love our child, and God brought him into this world just the way He wanted him to be. When I get discouraged, frustrated, scared, or stressed, I just turn to God - He always brings me peace!


Darby, mom to Brady, DDF508, born 10/17/08
 
J

jdkeep

New member
Hi. I'm new to the site as well. Our son, Brady, was diagnosed with CF when I was pregnant; he is 3 months old now, and he's doing great! He was born small due to a problem with my placenta, and he only weighed 5 lbs. 4 oz. He now weighs over 11 lbs., and we're very happy about that! We were able to prepare ourselves for this life adventure prior to my son arriving, and that did us a lot of good! We did a lot of research, which was very helpful. We don't know anyone that's going through what we are, so we're very glad to have found this website.
I honestly don't know a lot about what to do with a newborn with CF, as I'm still learning myself, but each day is a new day, and we do the very best we can because we love our child, and God brought him into this world just the way He wanted him to be. When I get discouraged, frustrated, scared, or stressed, I just turn to God - He always brings me peace!


Darby, mom to Brady, DDF508, born 10/17/08
 
J

jdkeep

New member
Hi. I'm new to the site as well. Our son, Brady, was diagnosed with CF when I was pregnant; he is 3 months old now, and he's doing great! He was born small due to a problem with my placenta, and he only weighed 5 lbs. 4 oz. He now weighs over 11 lbs., and we're very happy about that! We were able to prepare ourselves for this life adventure prior to my son arriving, and that did us a lot of good! We did a lot of research, which was very helpful. We don't know anyone that's going through what we are, so we're very glad to have found this website.
I honestly don't know a lot about what to do with a newborn with CF, as I'm still learning myself, but each day is a new day, and we do the very best we can because we love our child, and God brought him into this world just the way He wanted him to be. When I get discouraged, frustrated, scared, or stressed, I just turn to God - He always brings me peace!


Darby, mom to Brady, DDF508, born 10/17/08
 
J

jdkeep

New member
Hi. I'm new to the site as well. Our son, Brady, was diagnosed with CF when I was pregnant; he is 3 months old now, and he's doing great! He was born small due to a problem with my placenta, and he only weighed 5 lbs. 4 oz. He now weighs over 11 lbs., and we're very happy about that! We were able to prepare ourselves for this life adventure prior to my son arriving, and that did us a lot of good! We did a lot of research, which was very helpful. We don't know anyone that's going through what we are, so we're very glad to have found this website.
I honestly don't know a lot about what to do with a newborn with CF, as I'm still learning myself, but each day is a new day, and we do the very best we can because we love our child, and God brought him into this world just the way He wanted him to be. When I get discouraged, frustrated, scared, or stressed, I just turn to God - He always brings me peace!


Darby, mom to Brady, DDF508, born 10/17/08
 
J

jdkeep

New member
Hi. I'm new to the site as well. Our son, Brady, was diagnosed with CF when I was pregnant; he is 3 months old now, and he's doing great! He was born small due to a problem with my placenta, and he only weighed 5 lbs. 4 oz. He now weighs over 11 lbs., and we're very happy about that! We were able to prepare ourselves for this life adventure prior to my son arriving, and that did us a lot of good! We did a lot of research, which was very helpful. We don't know anyone that's going through what we are, so we're very glad to have found this website.
<br />I honestly don't know a lot about what to do with a newborn with CF, as I'm still learning myself, but each day is a new day, and we do the very best we can because we love our child, and God brought him into this world just the way He wanted him to be. When I get discouraged, frustrated, scared, or stressed, I just turn to God - He always brings me peace!
<br />
<br />
<br />Darby, mom to Brady, DDF508, born 10/17/08
 
C

corkee00

New member
Nancy congrats on the arrival of your new little girl.I too and in the same situation my daughter was born Jan 22nd and Monday I received a phone call stating that her IRT levels were elevated and that a mutation was found.I go Friday for a sweat test to find out if she indeed does have the disease.I have never been so scared,upset in my life.I also went to find out if I am a carrier.I know how you feel and I am here for your support if you need someone to talk to.I have many of the same questions as you do.I pray and wish you the best of luck with Maggie.
 
C

corkee00

New member
Nancy congrats on the arrival of your new little girl.I too and in the same situation my daughter was born Jan 22nd and Monday I received a phone call stating that her IRT levels were elevated and that a mutation was found.I go Friday for a sweat test to find out if she indeed does have the disease.I have never been so scared,upset in my life.I also went to find out if I am a carrier.I know how you feel and I am here for your support if you need someone to talk to.I have many of the same questions as you do.I pray and wish you the best of luck with Maggie.
 
C

corkee00

New member
Nancy congrats on the arrival of your new little girl.I too and in the same situation my daughter was born Jan 22nd and Monday I received a phone call stating that her IRT levels were elevated and that a mutation was found.I go Friday for a sweat test to find out if she indeed does have the disease.I have never been so scared,upset in my life.I also went to find out if I am a carrier.I know how you feel and I am here for your support if you need someone to talk to.I have many of the same questions as you do.I pray and wish you the best of luck with Maggie.
 
C

corkee00

New member
Nancy congrats on the arrival of your new little girl.I too and in the same situation my daughter was born Jan 22nd and Monday I received a phone call stating that her IRT levels were elevated and that a mutation was found.I go Friday for a sweat test to find out if she indeed does have the disease.I have never been so scared,upset in my life.I also went to find out if I am a carrier.I know how you feel and I am here for your support if you need someone to talk to.I have many of the same questions as you do.I pray and wish you the best of luck with Maggie.
 
C

corkee00

New member
Nancy congrats on the arrival of your new little girl.I too and in the same situation my daughter was born Jan 22nd and Monday I received a phone call stating that her IRT levels were elevated and that a mutation was found.I go Friday for a sweat test to find out if she indeed does have the disease.I have never been so scared,upset in my life.I also went to find out if I am a carrier.I know how you feel and I am here for your support if you need someone to talk to.I have many of the same questions as you do.I pray and wish you the best of luck with Maggie.
 
K

kb1968

New member
Hi There, We too have a newly diagnosed daughter, we found out 8 weeks ago at 16 months. She was tested at birth, we are in australia, but they only test for 12 mutations further testing of another 33 mutations only found the one she inherited from her father and not the one from me. Guess I am still in shock but have found talking about it helps and bringing her up as normal as possible helps. She is on enzymes and luckily has not had any other problems. Still finding it hard for her to gain weight only weighing 8.5 kilo. We live in the country, the air is clean, we have two very furry huskies which doesnt seem to bother her. We have a 14 year old but havent tested her yet to see if she is a carrier. Just enjoy your daughter and be thankful you have found out early as we had 16 months of 10 poos a day sleepless nights as she was always hungry, and if you are breastfeeding keep it up I still am at 18 months. Cheers Karen
 
K

kb1968

New member
Hi There, We too have a newly diagnosed daughter, we found out 8 weeks ago at 16 months. She was tested at birth, we are in australia, but they only test for 12 mutations further testing of another 33 mutations only found the one she inherited from her father and not the one from me. Guess I am still in shock but have found talking about it helps and bringing her up as normal as possible helps. She is on enzymes and luckily has not had any other problems. Still finding it hard for her to gain weight only weighing 8.5 kilo. We live in the country, the air is clean, we have two very furry huskies which doesnt seem to bother her. We have a 14 year old but havent tested her yet to see if she is a carrier. Just enjoy your daughter and be thankful you have found out early as we had 16 months of 10 poos a day sleepless nights as she was always hungry, and if you are breastfeeding keep it up I still am at 18 months. Cheers Karen
 
K

kb1968

New member
Hi There, We too have a newly diagnosed daughter, we found out 8 weeks ago at 16 months. She was tested at birth, we are in australia, but they only test for 12 mutations further testing of another 33 mutations only found the one she inherited from her father and not the one from me. Guess I am still in shock but have found talking about it helps and bringing her up as normal as possible helps. She is on enzymes and luckily has not had any other problems. Still finding it hard for her to gain weight only weighing 8.5 kilo. We live in the country, the air is clean, we have two very furry huskies which doesnt seem to bother her. We have a 14 year old but havent tested her yet to see if she is a carrier. Just enjoy your daughter and be thankful you have found out early as we had 16 months of 10 poos a day sleepless nights as she was always hungry, and if you are breastfeeding keep it up I still am at 18 months. Cheers Karen
 
K

kb1968

New member
Hi There, We too have a newly diagnosed daughter, we found out 8 weeks ago at 16 months. She was tested at birth, we are in australia, but they only test for 12 mutations further testing of another 33 mutations only found the one she inherited from her father and not the one from me. Guess I am still in shock but have found talking about it helps and bringing her up as normal as possible helps. She is on enzymes and luckily has not had any other problems. Still finding it hard for her to gain weight only weighing 8.5 kilo. We live in the country, the air is clean, we have two very furry huskies which doesnt seem to bother her. We have a 14 year old but havent tested her yet to see if she is a carrier. Just enjoy your daughter and be thankful you have found out early as we had 16 months of 10 poos a day sleepless nights as she was always hungry, and if you are breastfeeding keep it up I still am at 18 months. Cheers Karen
 
K

kb1968

New member
Hi There, We too have a newly diagnosed daughter, we found out 8 weeks ago at 16 months. She was tested at birth, we are in australia, but they only test for 12 mutations further testing of another 33 mutations only found the one she inherited from her father and not the one from me. Guess I am still in shock but have found talking about it helps and bringing her up as normal as possible helps. She is on enzymes and luckily has not had any other problems. Still finding it hard for her to gain weight only weighing 8.5 kilo. We live in the country, the air is clean, we have two very furry huskies which doesnt seem to bother her. We have a 14 year old but havent tested her yet to see if she is a carrier. Just enjoy your daughter and be thankful you have found out early as we had 16 months of 10 poos a day sleepless nights as she was always hungry, and if you are breastfeeding keep it up I still am at 18 months. Cheers Karen
 
C

CarolinasMom

New member
My daughter was born 1/16/09 and diagnosed one week later. It really helps reading some of your stories and knowing there are people out there in the same situation. It's easy to feel so isolated and scared all of the time. I have all of these same questions about eating, taking her out places, what happens if she cultures bad things, etc. We are still in the grieving process and very scared of the future, but knowing we have to take it one day at a time and stay optimistic helps.
 
C

CarolinasMom

New member
My daughter was born 1/16/09 and diagnosed one week later. It really helps reading some of your stories and knowing there are people out there in the same situation. It's easy to feel so isolated and scared all of the time. I have all of these same questions about eating, taking her out places, what happens if she cultures bad things, etc. We are still in the grieving process and very scared of the future, but knowing we have to take it one day at a time and stay optimistic helps.
 
C

CarolinasMom

New member
My daughter was born 1/16/09 and diagnosed one week later. It really helps reading some of your stories and knowing there are people out there in the same situation. It's easy to feel so isolated and scared all of the time. I have all of these same questions about eating, taking her out places, what happens if she cultures bad things, etc. We are still in the grieving process and very scared of the future, but knowing we have to take it one day at a time and stay optimistic helps.
 
C

CarolinasMom

New member
My daughter was born 1/16/09 and diagnosed one week later. It really helps reading some of your stories and knowing there are people out there in the same situation. It's easy to feel so isolated and scared all of the time. I have all of these same questions about eating, taking her out places, what happens if she cultures bad things, etc. We are still in the grieving process and very scared of the future, but knowing we have to take it one day at a time and stay optimistic helps.
 
C

CarolinasMom

New member
My daughter was born 1/16/09 and diagnosed one week later. It really helps reading some of your stories and knowing there are people out there in the same situation. It's easy to feel so isolated and scared all of the time. I have all of these same questions about eating, taking her out places, what happens if she cultures bad things, etc. We are still in the grieving process and very scared of the future, but knowing we have to take it one day at a time and stay optimistic helps.
 
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