cystic fibrosis?

Anyone have a baby diagnosed with cystic fibrosis? Our daughter was diagnosed at 7 days old, had bowel surgery at 3 days old for meconium ileus and spent 20 days in the Nicu - just looking for someone to share experiences with and to maybe encourage each other. I'm exhausted and don't feel like any of my friends with children can relate because they don't understand our routine, the constant feedings, medication administration before each feeding, the chest percussion therapy, risk for infection, weekly appointments to the CF clinic, etc.