CF Diagnosis: Part 1

Since there is so much to say, I decided to write about Madeline's CF diagnosis in parts. This is part 1, the beginning of our journey with CF.

Madeline was diagnosed with cystic fibrosis when she was ten weeks old. The story of how she was diagnosed can be summed up in three ugly words: failure to thrive. These three words leave out most of the real story, however. They leave out the worry, the heartache, the stress, the frustration, the relief, and the overall joy that we experienced during those ten long weeks as we struggled to find out what was wrong with our perfect baby girl.

Our first hint that something wasn't quite right came when Madeline was eleven days old and started vomiting after most of her feedings. As a first-time mom, it was hard to convince people that this was not regular baby spit-up. It was projectile vomiting (sometimes two or three feet across the room), which is absolutely not normal. And like I said, it happened after most of her feedings. Also not normal.

At her two-week doctor's appointment, we found out that Madeline had not yet regained her birth weight. Babies generally lose a bit of weight after they are born and then are expected to gain it back by the time they are two weeks old. Madeline only lost a few ounces to begin with, but she was just sort of stuck where she was, hovering around 5.5 pounds. This was a red flag that we needed to monitor her weight closely and make sure she started to gain.

Madeline also started to have stomach cramps at night, and she would cry until the early hours of the morning before finally falling asleep out of sheer exhaustion. Once again, it was hard to know if this was really something to be concerned about, or if it was simply normal newborn behavior. Something always made us feel like she was in serious pain, though. When I looked in her eyes, I could tell that she was so sad and confused about why she was hurting so much. That look always broke my heart, and I tried to explain to her why these bodies are worth it, even though they can hurt so much.

I remember holding Madeline late one night, just rocking and crying and praying. Deep inside, I knew that something was wrong, even though everyone told me not to worry. That night I sensed that Madeline has an absolutely amazing spirit--that she is just so good--and I thought about how incredible it is that Heavenly Father trusts me to be her mother. It was such an overwhelming feeling, especially when I felt so absolutely powerless to alleviate her pain. But that night, I felt honored to just hold her and love her and let her know that it would be okay. And I felt honored that she already loved me and trusted me, even though I'm just a frail mortal myself and couldn't make everything okay right that moment.

It is amazing how quickly one tiny baby girl became the absolute center of our thoughts and prayers.

Read part 2 of Madeline's diagnosis story here.