websterhome
New member
Well, here goes. I found out that I was a carrier of CF when about 12 weeks pregnant, my husband was then tested & he was also positive. We opted against an amnio or CVS because we knew we wouldn't terminate & after talking in length with physicians we respected, felt we could handle the wait. I work as a Neonatal RN at a major hospital, but I've never cared for a baby that I knew had CF. I guess I'm very thankful that our little girl (Lucia Grace, Lucy for short) was born into the generation that she's in - versus being born years ago when medical care wasn't as great or available. Our biggest worry right now is infection & keeping her away from potential risks. She's now almost 10 weeks old & we've been very careful to not take her into public places because of the risk - recommended by our CF clinic. That means no church, grocery store, gym, etc. I'm thinking that we'll become a bit more normal after the cold/flu/RSV season is over. Lucy has had liquidy/oily stools since she was born. (Pancreatic elastase level indicated extreme pancreatic insuffiency <50). She's on one capsule of Creon with each breastfeeding & then I give her a bottle of breasmilk mixed with ABDEK vitamins & 1/8 tsp salt once a day. Luckily she's tolerating all well & her stools, although still oily, are becoming more seedy & normal. Her weight gain has been tremendous! She's >90th percentile in weight & length although her weight to length ratio is still not as high as the dietician would like. Their goals seem unrealistic to me with how big they'd like her to be, but I'm sure they know what they're doing. She's 13 pounds now at 9+ weeks after a birth weight of 7lb 3.8oz. We've also started chest percussion 1-2 times daily. It's just preventative, she has no respiratory symptoms, we're so thankful. I could write forever, that's enough for now... Would love any comments/thoughts/advice! Thanks!