Hello, Lil flipper! First, let me say "I'm sorry" that you guys have received a CF diagnosis for your baby.
My daughter is now 28months, she was dx'd when she was 6 weeks old. I'm older mom, so we did a bunch of prenatal testing...there is no family hx of CF, so we decided not to test for that.
As said before, all CFers are not the same. Severity depends on LOTS of factors. I know its easy to wanna plan on "the worst", but, I have found that we just need to keep a "wait and see" attitude. We try not to anticipate bad things, or things that haven't happened yet. For example, Kate's liver tests were a little off, and right away I spazed out and was thinking liver transplant!!! The what iffing will drive you crazy!!
Kate's 1st 6 weeks were hard. She was hungry all the time, nursed well, but then would cry for hours after eating. Her poops were stinky, green and mucousy. The CF test on her newborn screeing test came back high, but the doc told us she was just a carrier and not to worry. He also said she had colic and maybe a milk allergy. After I talked to him, I licked her forehead and she tasted salty, so I knew she had CF. Well, one day, she cried for hours and refused to eat. We were seen, sent to the CF clinic
and ended up having the blood/DNA analysis, which was +. We started her on enzymes at 6 weeks. Once she had those, she was a whole different baby! I cried the first time b/c it was the first enjoyable feeding we'd had. Anyway, she is now happy, healthy and doing well. She has the deltaF508 and a 4218insT combo mutation. Who knows what s/s this combo will produce in her future?
Anyway, living with CF does suck, but ya deal with it, and do everything you can to keep your kid healthy. We do Zantac for her reflux and to help the enzymes work more effectively, we do enzymes with every meal,snack, glass of milk, etc. We do the special CF vitamins. I give her the liquid meds thru an oral syringe. The enzyme capsules I break open and mix them with baby pears (she liked pears better than applesauce). When she was a baby, we did the nebulizer 2x day, and the chest percussion. Kate doesn't have any resp symptoms at this time, but she did culture Pseudomonas @ 18months and is now chronic. We now have the vest that vibrates her. I also use do other supplements orally and inhaled (via neb).
I use GSH, not b/c I think its a cure, but b/c it helps the immune system. Research things, don't be afraid to ask questions, trust your mom instincts, and realize that docs don't know everything. Also, allow yourself time to cry, be devastated, be mad, whatever. I still have bad days over Kate's CF.
We have just incorporated enzymes, treatments, etc. into our daily routine. I carry enzymes and pears in the diaper bag. I have given enzymes EVERYWHERE!! (the mall, amusement parks, library,in the car...) We have a portable neb and have done nebs lots of places. I don't let CF keep us captive in our house.
People have asked me "if you knew Kate had CF, would you still have had her?" I don't know.....but I do know that she is the greatest little person. Even at this young age, she has a spirit and spunk that keeps ME going. As a parent, CF has made me appreciate my daughter more.
So, good luck in your search. Sorry this is so long. Keep us posted!
mom of great Kate, w/ CF