Prenatal CF diagnosi

2

2girls

New member
Hi everyone - we are also recently diagnosed through amnio and received our crappy news last Friday. It has been a week of ups and downs, but we are staying positive. I am 23 weeks prego with our third child - a son! We are also having monthly ultrasounds at our Perinatal Center and have scheduled a meeting with the pediatric pulmonologist as well as the CF Clinic at Children's Hospital. We live in Illinois, but will receive treatment in the St. Louis, MO area.

I would love to chat with some some of you newly diagnosed moms - I hear CF kids are pretty darn special and I know I feel blessed to be chosen to take care of him. My daughters are 6 and 3 and are so excited about their baby brother - not quite sure how to handle this news with them.

My prayers are with all CF kids and their families. I think it is only hopeless if you make it hopeless.

Do any of you live in the St. Louis area? Wondering if there are support groups available.
 
2

2girls

New member
Hi everyone - we are also recently diagnosed through amnio and received our crappy news last Friday. It has been a week of ups and downs, but we are staying positive. I am 23 weeks prego with our third child - a son! We are also having monthly ultrasounds at our Perinatal Center and have scheduled a meeting with the pediatric pulmonologist as well as the CF Clinic at Children's Hospital. We live in Illinois, but will receive treatment in the St. Louis, MO area.

I would love to chat with some some of you newly diagnosed moms - I hear CF kids are pretty darn special and I know I feel blessed to be chosen to take care of him. My daughters are 6 and 3 and are so excited about their baby brother - not quite sure how to handle this news with them.

My prayers are with all CF kids and their families. I think it is only hopeless if you make it hopeless.

Do any of you live in the St. Louis area? Wondering if there are support groups available.
 
2

2girls

New member
Hi everyone - we are also recently diagnosed through amnio and received our crappy news last Friday. It has been a week of ups and downs, but we are staying positive. I am 23 weeks prego with our third child - a son! We are also having monthly ultrasounds at our Perinatal Center and have scheduled a meeting with the pediatric pulmonologist as well as the CF Clinic at Children's Hospital. We live in Illinois, but will receive treatment in the St. Louis, MO area.

I would love to chat with some some of you newly diagnosed moms - I hear CF kids are pretty darn special and I know I feel blessed to be chosen to take care of him. My daughters are 6 and 3 and are so excited about their baby brother - not quite sure how to handle this news with them.

My prayers are with all CF kids and their families. I think it is only hopeless if you make it hopeless.

Do any of you live in the St. Louis area? Wondering if there are support groups available.
 
2

2girls

New member
Hi everyone - we are also recently diagnosed through amnio and received our crappy news last Friday. It has been a week of ups and downs, but we are staying positive. I am 23 weeks prego with our third child - a son! We are also having monthly ultrasounds at our Perinatal Center and have scheduled a meeting with the pediatric pulmonologist as well as the CF Clinic at Children's Hospital. We live in Illinois, but will receive treatment in the St. Louis, MO area.

I would love to chat with some some of you newly diagnosed moms - I hear CF kids are pretty darn special and I know I feel blessed to be chosen to take care of him. My daughters are 6 and 3 and are so excited about their baby brother - not quite sure how to handle this news with them.

My prayers are with all CF kids and their families. I think it is only hopeless if you make it hopeless.

Do any of you live in the St. Louis area? Wondering if there are support groups available.
 
2

2girls

New member
Hi everyone - we are also recently diagnosed through amnio and received our crappy news last Friday. It has been a week of ups and downs, but we are staying positive. I am 23 weeks prego with our third child - a son! We are also having monthly ultrasounds at our Perinatal Center and have scheduled a meeting with the pediatric pulmonologist as well as the CF Clinic at Children's Hospital. We live in Illinois, but will receive treatment in the St. Louis, MO area.
<br />
<br />I would love to chat with some some of you newly diagnosed moms - I hear CF kids are pretty darn special and I know I feel blessed to be chosen to take care of him. My daughters are 6 and 3 and are so excited about their baby brother - not quite sure how to handle this news with them.
<br />
<br />My prayers are with all CF kids and their families. I think it is only hopeless if you make it hopeless.
<br />
<br />Do any of you live in the St. Louis area? Wondering if there are support groups available.
 
F

fuel1316

New member
congrats on the baby!

we have a 5 week old baby girl that was Dx'd at 2 weeks old. she had the intestinal block one of the pp talked about. the had a meconium plug block in her intestine and had to have surgery to remove it.

she got out of the nicu at alittle over 3 weeks and has been home with us now. she has df508 as well. she is pancreatic insuficient and on 1 pill of creon before every meal. its hard to think that your baby wont be like you might have planned but its still your baby and will always be your special little one.

when i see my dd i dont see her CF. in fact i forget she even has it until were sitting in the CF center waiting room. her lungs are great for now so its just the enzymes before every meal and although they can be a pain since you have to get meds ready before every feeding, you get used to it.

we have hardwood floors (in before i got pregnant) so i guess they help. i havnt noticed since shes still so young. i asked my CF DR. about air purifiers and she said "there isnt really any proof that they help too much" so i guess you can get one but im not going to since my dr said its not that great of a help. ive seen alot fo the adult's with cf around here say not to use anything with fragrance, or chemicals (use all natural cleaners) no sprays or anything that can linger in the air.

so from what i gather: ORGANIC= BEST
 
F

fuel1316

New member
congrats on the baby!

we have a 5 week old baby girl that was Dx'd at 2 weeks old. she had the intestinal block one of the pp talked about. the had a meconium plug block in her intestine and had to have surgery to remove it.

she got out of the nicu at alittle over 3 weeks and has been home with us now. she has df508 as well. she is pancreatic insuficient and on 1 pill of creon before every meal. its hard to think that your baby wont be like you might have planned but its still your baby and will always be your special little one.

when i see my dd i dont see her CF. in fact i forget she even has it until were sitting in the CF center waiting room. her lungs are great for now so its just the enzymes before every meal and although they can be a pain since you have to get meds ready before every feeding, you get used to it.

we have hardwood floors (in before i got pregnant) so i guess they help. i havnt noticed since shes still so young. i asked my CF DR. about air purifiers and she said "there isnt really any proof that they help too much" so i guess you can get one but im not going to since my dr said its not that great of a help. ive seen alot fo the adult's with cf around here say not to use anything with fragrance, or chemicals (use all natural cleaners) no sprays or anything that can linger in the air.

so from what i gather: ORGANIC= BEST
 
F

fuel1316

New member
congrats on the baby!

we have a 5 week old baby girl that was Dx'd at 2 weeks old. she had the intestinal block one of the pp talked about. the had a meconium plug block in her intestine and had to have surgery to remove it.

she got out of the nicu at alittle over 3 weeks and has been home with us now. she has df508 as well. she is pancreatic insuficient and on 1 pill of creon before every meal. its hard to think that your baby wont be like you might have planned but its still your baby and will always be your special little one.

when i see my dd i dont see her CF. in fact i forget she even has it until were sitting in the CF center waiting room. her lungs are great for now so its just the enzymes before every meal and although they can be a pain since you have to get meds ready before every feeding, you get used to it.

we have hardwood floors (in before i got pregnant) so i guess they help. i havnt noticed since shes still so young. i asked my CF DR. about air purifiers and she said "there isnt really any proof that they help too much" so i guess you can get one but im not going to since my dr said its not that great of a help. ive seen alot fo the adult's with cf around here say not to use anything with fragrance, or chemicals (use all natural cleaners) no sprays or anything that can linger in the air.

so from what i gather: ORGANIC= BEST
 
F

fuel1316

New member
congrats on the baby!

we have a 5 week old baby girl that was Dx'd at 2 weeks old. she had the intestinal block one of the pp talked about. the had a meconium plug block in her intestine and had to have surgery to remove it.

she got out of the nicu at alittle over 3 weeks and has been home with us now. she has df508 as well. she is pancreatic insuficient and on 1 pill of creon before every meal. its hard to think that your baby wont be like you might have planned but its still your baby and will always be your special little one.

when i see my dd i dont see her CF. in fact i forget she even has it until were sitting in the CF center waiting room. her lungs are great for now so its just the enzymes before every meal and although they can be a pain since you have to get meds ready before every feeding, you get used to it.

we have hardwood floors (in before i got pregnant) so i guess they help. i havnt noticed since shes still so young. i asked my CF DR. about air purifiers and she said "there isnt really any proof that they help too much" so i guess you can get one but im not going to since my dr said its not that great of a help. ive seen alot fo the adult's with cf around here say not to use anything with fragrance, or chemicals (use all natural cleaners) no sprays or anything that can linger in the air.

so from what i gather: ORGANIC= BEST
 
F

fuel1316

New member
congrats on the baby!
<br />
<br />we have a 5 week old baby girl that was Dx'd at 2 weeks old. she had the intestinal block one of the pp talked about. the had a meconium plug block in her intestine and had to have surgery to remove it.
<br />
<br />she got out of the nicu at alittle over 3 weeks and has been home with us now. she has df508 as well. she is pancreatic insuficient and on 1 pill of creon before every meal. its hard to think that your baby wont be like you might have planned but its still your baby and will always be your special little one.
<br />
<br />when i see my dd i dont see her CF. in fact i forget she even has it until were sitting in the CF center waiting room. her lungs are great for now so its just the enzymes before every meal and although they can be a pain since you have to get meds ready before every feeding, you get used to it.
<br />
<br />we have hardwood floors (in before i got pregnant) so i guess they help. i havnt noticed since shes still so young. i asked my CF DR. about air purifiers and she said "there isnt really any proof that they help too much" so i guess you can get one but im not going to since my dr said its not that great of a help. ive seen alot fo the adult's with cf around here say not to use anything with fragrance, or chemicals (use all natural cleaners) no sprays or anything that can linger in the air.
<br />
<br />so from what i gather: ORGANIC= BEST
 
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