My daughter was also diagnosed at birth and she is almost 4 years old now. She has one DF508 and one other more rare mutation (N1303K). My daughter has zero pancreatic function, so she lost weight in the first weeks and finally starting coming back up after she started taking enzymes. I remember feeling exactly the same in the beginning, worrying about every cough, runny nose, etc. and just waiting for her first occurrence of Pseudomonas. We did the chest therapy from the beginning, using one of those little infant oxygen mask and tongue depressor contraptions. She graduated to a vest when she was about a year and a half, and she has been doing that twice a day ever since. She had always had good lung function, you can't really know how that aspect of the CF will turn out so you have to keep up with chest therapy to be proactive. It's definitely better than just waiting and seeing how her lung function will turn out!She has had one run in with the dreaded Pseudomonas when she was a little over two, and she had a feeding tube placed at the same two week hospital stay.
The best advice I can give you is to just roll with it. It all becomes normal; the chest therapy, nebulizers, enzymes (if needed), vitamins, etc. It all becomes so routine that you don't think twice about it being part of your day. Also, understand that things will come in steps. In our experience, we had time to adjust to each new thing that was thrown our way. It began with enzymes, iron supplement, and chest therapy. Then we added the vest. Then an inhaled antibiotic. Then hypertonic saline (also inhaled), then a feeding tube, then ANOTHER inhaled med. It sounds overwhelming but I promise you will get it under control if you take it one day, one treatment, one cuddling/vest/reading session at a time. And explaining things to your daughter will pay off in the long run. She's too little to understand now, but even a four year old can understand that she needs to do her vest and medicine before school and bed so her lungs stay healthy and she doesn't have to go in the hospital. She even reminds her teachers at preschool that she needs enzymes every time she eats.
ALSO, I hope you've heard about the amazing new treatments that are "curing" CF. They have found a way to reverse the basic gene defect and make the symptoms obsolete - with what looks like just a pill a day. It has been shown to work on one defect, and the DDF508 is the next one going through trials. That's your daughter! There's more info on that here,-- http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/6-28-Final-Results-Phase-2-Kalydeco-and-VX-809.cfm -- check it out because it's super exciting!
There is so much more I could tell you... we practically kept Chelsea in a bubble for the first year or so, carrying hand sanitizer everywhere and making everyone use it when they were around her. We did manage to keep her pretty cold free. After a certain point, though, you have to let them slowly adjust to germs. Unless you plan on keeping them out of school forever, they're going to have to get exposure or they're going to be in big trouble come kindergarten. I put Chelsea in a home daycare that had four other children at it when she was three and moved her up to a very clean Montessori preschool last November. She has gotten some minor colds and one case of strep throat, but we keep up with the treatments and she gets over things and I know it's strengthening her immune system.
Please take what I'm telling you with a grain of salt, it's just my experience and your daughter's doctor could have different suggestions. One of the most helpful things I've found is to have constant contact with other CF parents because if nothing else, they know exactly what you're going through and they can offer moral support which is invaluable.
Good luck with everything, take deep breaths when you're overwhelmed, and surround that little girl with strength and love!