Hi, I guess we're just a bit ahead of you... my daughter Lucia Grace "Lucy" was diagnosed at 6 days old & she's now 5 months. The past 5 months have been a learning curve with giving enzymes, salt, vitamins & Zantac as well as doing chest PT and going to CF clinic appointments as well as the normal well baby checks with our pediatrician. I feel lucky in that I'm a RN, I'm already comfortable with giving meds to babies... but it's much different when that baby is my own. With Lucy being born over Labor Day weekend, we were just entering into the fall... aka cold & flu season... I've been quite a homebody these last months, not going to the grocery store, gym, mall, church or large family gatherings because I'm just too protective of her getting sick. I know I'll eventually come out of this shell & be a bit more comfortable (today I cheated a bit from normal & we spent 30 min in a coffee shop meeting a friend), but for now it's relatively easy to protect her & overall so worth it. One doctor actually mentioned that keeping her free of colds this first winter could do as much as add 5 years to her life by lessening damage to her lungs. As soon as I heard this, I became a germaphob. We go through lots of the Costco version of Chlorox wipes & Purell hand gel. I'm careful about having people gel before holding her & we are never around people who have just been or currently are sick. It's such an emotional rollercoaster & sometimes seems so surreal because your baby looks absolutely perfectly healthy & happy - seems there's no way they could be "sick". I had a "lightbulb" moment the other day when our doctor had us start a new treatment (hypertonic saline through a nebulizer), at first I was emotional because it seemed to make the diagnosis even more real, but then I reminded myself that we're not doing these things because Lucy is ill, we're doing them because we want to keep her healthy & help her to live the longest, happiest, fullest life possible. My husband & I are already thinking about activities to do as a family that will be health-promoting for her - very excited to teach her to snowski, waterski, hike, play soccer,etc. I haven't met many people with CF in person, but from what I've read online, I completely agree that those kids/adults with CF are quite amazing - they have hearts of gold & a way of being compassionate & living life to the fullest that only comes from going through what they do. Please know that I'm thinking of you & praying that you ease into all of this as gracefully as possible. One thing I allowed myself is with every new med we started, I didn't expect myself to remember every dose at the perfect time the first week - it's really hard with a new baby to remember when you last gave this or that - believe me, it gets much easier as time goes by.
Blessings,
Christy
