I didn't BF and we tried pregistimil for about a week -- think the dietician said the cheapest source was buying directly from the company. DS hated it -- he'd clamp his mouth shut and refused to eat it -- nurses told us to force feed him -- move his jaw, squeeze the bottle -- just made things worse and he developed a bottle aversion. We did taste it --- bleah -- tasted like vomit and the way road kill smells. Our CF doctor said to feed him what he'll eat, so we switched to infamil lipil made with a greater ratio of powder to water, so as to bump up the calories.
Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!
Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.
Ask about CPT -- better to get in the habit while they're young so the get used to it --- plus it's good lung care. Ask about vitamins, enzymes... When you go to the CF clinic, if there's a community waiting room, make sure you distance yourself physically from other cfers (cross contamination issue) -- wash your hands or use hand sanitizer after touching surfaces. Insist OTHER wash hands before they touch your child -- one of the doctors is terrible about not doing that. Bleah!
Bring along a notebook to write things down, questions to ask. Also, make sure you bring along baby stuff (formula, diapers...) in case you're there for several hours. May want to bring along a magazine and something to drink/snack on for yourself. Our first CF clinic appointment last 4 hours, most of it waiting for the CF team members to make an appearance.