We will never forget when the nurse came into our hospital room in the middle of the night and told us they were moving Maddie to the neonatal intensive care unit. Something wasn’t quite right and they needed to figure out what was going on. This was our brand new beautiful baby girl, only hours old, she looked fine; what could be wrong? They gave us a multitude of possibilities and a transfer to Children’s Hospital & Medical Center.
We spent two very long days of testing and procedures before we got our answer. “Maddie has cystic fibrosis.” These words spoken by our physician nearly knocked us to the ground. What did this mean for Maddie? Where do we go from here? What do we need to do? We had no warning. No one in either of our families had cystic fibrosis (CF). We had very little understanding and virtually no exposure to it.
The CF team at Children’s wasted little time. They met with us within hours and gave us a plan. What we have since learned is more than overwhelming. Every day of our lives is dedicated to keeping Maddie as healthy as possible. We do multiple breathing treatments a day and she takes countless medications. The great news is Maddie takes all of it in stride. Our family, friends, physicians and the Cystic Fibrosis Foundation have been extremely supportive and we share the common goal of finding a cure. In addition, with the help of so many others we’ve raised thousands of dollars to help fund research for a cure.
Maddie has had multiple hospital stays for IV antibiotic treatment and had a G-button placed to give her extra nutrition at night while she’s sleeping. None of this has been easy, but we are always amazed by her attitude and willingness to do what she needs to do to stay well.
Maddie’s big brother Calvin is does not have cystic fibrosis. He is very supportive and likes to help out with Maddie’s treatments. Maddie recently revealed that she won’t need to do treatments when she’s her brother's age. Our hope is that she’s right. With advances in CF treatment and the real hope for a cure, we are confident that day will come for her and all the others fighting CF.