morgan0713
New member
Wow, I was in your spot almost a year ago... I am very sorry for you and any decision you make, you will live with for the rest of your life. That being said, this was the best way for my husband and me to find out.
We found out our youngest son was going to have CF in utero with an amnio. Though the news was devastating, we are planners and were able to line up our doctors at the CF clinic, meet them, get all kinds of literature to prep us for life after birth and even talk with a family who had a child with CF all before his birth. No one could prepare enough for the arrival of a child with CF, but fortunately things are better than we ever hoped. Luckily our CFer was our third, so a lot of the things for him are just 'baby' things and not CF things. 90% of our day is baby and the rest is CF.
While we have been doing CPT, inhalers and enzymes since Day 2 of life, he is pretty much a fat, easy going baby. I think since we started all of our CF things so early, it has to have helped him be better off than finding out later due to newborn screening or failure to thrive (we didn't have echogenic bowel.) We are very careful with flu shots, washing hands up to our elbows constantly and making certain no one is sick around him, but he has two older brothers who are germ factories so we take it one day at a time. I would suggest not to read the stuff on the internet about CF, unless it comes from the CFF site. Our pulmonologist agreed because I was crying every day about the future for my son before he was born. Now I feel more hopeful, especially when I hear from families with older CFers and seeing how well he is doing.
Our older sons love their brother so much and often try to do CPT on him when we are not looking! Our oldest wants to learn how to do 'pat-pat' so he can do it when we go into heaven! We manage to get it all done (CTP, enzymes, taking care of our other children, having fun and living) because it has to be that way. You may want to have a little notebook to write down everything (enzyme times, poops -what they look like, vitamins, etc.) because it has been very helpful when calling the CF nurse to adjust enzymes or prune bottles or whatever during the first couple of months with a newborn. It's convenient to see how he has been doing over the past couple of weeks, which you can't remember all the time. I still use it now that he is almost 6 months. You will never know so much about your kiddo's poop!
Your story touched my heart because it seems very similar to where we were at not too long ago. This is the first post I have ever commented on, because it reminded me of our situation not too long ago. Remember, you can do this. There is so much that is within our control with CF, so my husband and I hold on to that. I hope this information is helpful.
We found out our youngest son was going to have CF in utero with an amnio. Though the news was devastating, we are planners and were able to line up our doctors at the CF clinic, meet them, get all kinds of literature to prep us for life after birth and even talk with a family who had a child with CF all before his birth. No one could prepare enough for the arrival of a child with CF, but fortunately things are better than we ever hoped. Luckily our CFer was our third, so a lot of the things for him are just 'baby' things and not CF things. 90% of our day is baby and the rest is CF.
While we have been doing CPT, inhalers and enzymes since Day 2 of life, he is pretty much a fat, easy going baby. I think since we started all of our CF things so early, it has to have helped him be better off than finding out later due to newborn screening or failure to thrive (we didn't have echogenic bowel.) We are very careful with flu shots, washing hands up to our elbows constantly and making certain no one is sick around him, but he has two older brothers who are germ factories so we take it one day at a time. I would suggest not to read the stuff on the internet about CF, unless it comes from the CFF site. Our pulmonologist agreed because I was crying every day about the future for my son before he was born. Now I feel more hopeful, especially when I hear from families with older CFers and seeing how well he is doing.
Our older sons love their brother so much and often try to do CPT on him when we are not looking! Our oldest wants to learn how to do 'pat-pat' so he can do it when we go into heaven! We manage to get it all done (CTP, enzymes, taking care of our other children, having fun and living) because it has to be that way. You may want to have a little notebook to write down everything (enzyme times, poops -what they look like, vitamins, etc.) because it has been very helpful when calling the CF nurse to adjust enzymes or prune bottles or whatever during the first couple of months with a newborn. It's convenient to see how he has been doing over the past couple of weeks, which you can't remember all the time. I still use it now that he is almost 6 months. You will never know so much about your kiddo's poop!
Your story touched my heart because it seems very similar to where we were at not too long ago. This is the first post I have ever commented on, because it reminded me of our situation not too long ago. Remember, you can do this. There is so much that is within our control with CF, so my husband and I hold on to that. I hope this information is helpful.