Ok. Now I understand a bit more.
We basically knew DS would have CF when I was around 20 weeks pregnant due to an echogenic bowel and DH and I being tested positive to be carriers.
One thing that I wished I had understood earlier is how important the nutrition is for CFers. I remember the clinic asking us if we wanted to see the nutritionist (because insurance usually doesn't cover, we would have to pay) and I told them that I wasn't worried about it because he wouldn't be eating anything except breastmilk at first. Boy was I wrong. I think we've seen the nutritionist about 15 times since Parker's birth and he's only 11 mos. old!
The CF clinic might not want to set up any appointments until the baby is born and is diagnosed using a sweat test or new born screening (not sure if you have it there in CA?). I know that I had called our clinic and the coordinator had told me how they don't set up appts until there is an actual patient (even though I totally understand where you are coming from wanting to be prepared and all that).
I think the best advise I can give you is to try and take care of yourself right now and try not to worry about what will happen because only the future knows that. Enjoy your pregnancy as much as you can while still educating yourself on CF. DH and I got a good book called "Cystic Fibrosis A guide for Patient and Family" by David M. Orenstein. This book as well as this site were the two biggest things that helped me understand CF while I was pregnant.
If you have any additional ?s or anything at all, feel free to PM me.
We basically knew DS would have CF when I was around 20 weeks pregnant due to an echogenic bowel and DH and I being tested positive to be carriers.
One thing that I wished I had understood earlier is how important the nutrition is for CFers. I remember the clinic asking us if we wanted to see the nutritionist (because insurance usually doesn't cover, we would have to pay) and I told them that I wasn't worried about it because he wouldn't be eating anything except breastmilk at first. Boy was I wrong. I think we've seen the nutritionist about 15 times since Parker's birth and he's only 11 mos. old!
The CF clinic might not want to set up any appointments until the baby is born and is diagnosed using a sweat test or new born screening (not sure if you have it there in CA?). I know that I had called our clinic and the coordinator had told me how they don't set up appts until there is an actual patient (even though I totally understand where you are coming from wanting to be prepared and all that).
I think the best advise I can give you is to try and take care of yourself right now and try not to worry about what will happen because only the future knows that. Enjoy your pregnancy as much as you can while still educating yourself on CF. DH and I got a good book called "Cystic Fibrosis A guide for Patient and Family" by David M. Orenstein. This book as well as this site were the two biggest things that helped me understand CF while I was pregnant.
If you have any additional ?s or anything at all, feel free to PM me.