We had our first visit to the Cystic Fibrosis Clinic on the 6th of June. They gave us a ton of information about CF and the types of treatments that E will eventually need.
We also learned that she will need to take pancreatic enzyme replacements from now on.
Many people with CF have trouble gaining weight because the enzymes that are produced in their pancreas cannot make it to the small intestine where food is digested. So we are giving her an enzyme replacement that she will take every time she eats. Once she learns how to swallow a pill she can take it that way, but until then we have to break apart the capsule and pour the medicine out onto a spoonful of apple sauce.
We are also giving her a daily multivitamin and adding salt to her bottles since people with CF lose a lot of salt when they sweat.
It's not a quick process, but we're getting the hang of it and as long as she gets to eat, she's happy!
Now that she has the enzymes she's gaining weight a lot better and when she turned 4 weeks old she was back up to weighing 9 lbs 8 oz. (her birth weight).