My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.
To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.
I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.
I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.
Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise