Hi Jennifer,
Everyone is right, you have come to the right place.
It is really a good thing you learned about your little girl's CF so early in her life. Treatment can begin right away, which is really important-- for her health, and also for her happiness/comfort. A baby without enzymes who needs enzymes is a hungry, gassy, blocked up OR diarheaing, generally unhappy baby.
I, like Emily, also had meconium ileus as a baby. Just to add to what she said, ileus refers to part of the intestine, I think. Mine was spotted on a sonagram when my mom was 17 weeks along, which made them very prepared at my birth (a planned C-section) to operate and deal with the bowel obstruction as quickly as possible. I was also the first (and only) member of my whole family to have CF. CF is rare to have since it is a recessive gene, but also, it was only identified in 1938, so it is possible family members had it before it was even known as a disease (that was kind of irrelevent, though).
What is important in CF care is being compliant with treatments and staying positive. Does being compliant prevent progression? No, but it slows it tremendously. The better shape your lungs stay in for as long as possible, the better! I tend to agree with Emily's doctor about us CFers being pretty and smart-- all of us CF kids (who later grow into CF adults) have this sort of 'spirit' or attitude about them that is hard to put into words. I'm almost 16, a sophomore in high school. I take Accelerated level classes, manage field hockey and softball, am on debate and in the school band! Despite CF, I definitely lead a full life, as your little one will too (have you thought of any names yet?).
I'm so glad you found us here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I just read this over and realized it wasn't especially informative, but I just wanted to get out there that I, like everyone else, am here for you. <img src="i/expressions/heart.gif" border="0">