I've tried to search for mention of cystic fibrosis here, but can't find much. I'm looking for other moms with experience BFing a CF baby. Our LO was diagnosed at 3.5 weeks. He's now 5 months, and looking good! I just have trouble reconciling BF advice with CF nutrition, and I'd like to know what others have experienced.
Just FYI, our current regime includes pancreatic enzyme replacements, and acid-blocker to protect the enzymes, vitamin supplements (Vitamax and Polyvisol), and about 4 oz. per day of formula-fortified breastmilk (1/2 tsp per oz). We just started (yesterday) pumping at every feeding to try to combine as much hindmilk as possible for that one bottle.
The CF nutritionist has said we can start cereals "whenever we're ready", and she says that cereals have more calories by volume than other foods like veggies. It's also been recommended that when we start trying veggies, we add a little olive oil to up the calorie content.
Because I know it's best if my LO doesn't get sick (because it can be really difficult to clear up infections), I want to BF as long as possible. I figure the extra pumping will help keep up my supply so that it's not affected by all the additional calories DS will be taking in. With the CF, I'm not sure it would be affected anyway, though, as his absorption of those calories will not be the same as a typical baby.
There's just a lot of conflicting advice (you should have seen the look on my LLL leader's face when I told her about the bottle...). We're doing fine now, but I'd love to hear a long-term BF story to know that meeting our goals is possible!