CF Diagnosis: Part 2

Two months ago, I began telling the story of Madeline's diagnosis with cystic fibrosis. This is part 2 of that story. Feel free to refresh your memory here on what happened last.

Once we knew that Madeline wasn’t gaining weight, the real drama began. Most people tried to reassure me that she was fine by saying, “Don’t worry, all babies grow at different rates.” While that’s true, and people were only trying to be kind, most babies also grow. There is a difference between slow weight gain and no weight gain. We knew there was a problem, and it didn’t feel helpful to be told that I shouldn’t be concerned or that I was overreacting, especially when anyone associated with the medical profession told me otherwise.

Of course we hoped that Madeline would suddenly start gaining weight and our worries would be over, but in the meantime, denial wasn’t going to get us anywhere. We were lucky enough to have a wonderful pediatrician who was very supportive of our efforts to pinpoint the source of Madeline’s growth problems, and he began meeting with us weekly to keep track of her weight gain and help us figure out what was wrong.

Since most cases of “failure to thrive” stem from nutritional issues, that’s where we started as well. I was exclusively breast-feeding Madeline, and this led to several questions, such as: Is she latching on properly? How much milk is she actually drinking each feeding? Is the fat content of the milk high enough?

First we met with a local lactation specialist, who verified that Madeline had a great latch and was, in fact, a wonderful nurser. Go, baby.

Just because she was cute . . .

Then, coached by Dave's mom, who is also a lactation specialist, we rented a high-quality baby scale. For several weeks I weighed Madeline before and after every single feeding to track how much milk she was actually drinking. We also kept track of her wet and messy diapers (including the color) so we would know more about how her body was processing her food. We did an official weigh-in at the same time each day, taking care to make sure the conditions were the same each time (right before she ate, wearing only a clean diaper, etc.). Dave busted out his Excel skills and made charts to track her food intake and overall weight gain.

Doing these things might sound so simple, but in reality, they were incredibly draining. When Madeline woke up in the middle of the night (after finally falling asleep from a long evening with stomach cramps), the last thing I wanted to do was put her on the scale when she was screaming and wanted to just eat, already. It was a constant reminder that something was wrong, and the stress of feeling directly responsible for her eating (and thus her growth) is impossible to describe.

When she was six weeks old, we could still see her ribs, her newborn clothes were baggy, and her arms and thighs had skin folds that were waiting to be filled with chub. But her cheeks had started to get chubby, her head (and thus her brain) was growing, and she was bright-eyed and alert.

I love that you can see her perfectly round cheeks and yet skinny little self.

By the end of our experiment tracking Madeline's weight, we had proof (in the form of Excel spreadsheets and impressive charts drafted by DP) that she was getting plenty to eat. That was good news in a way, but at the same time, a problem with her intake would have been relatively easy to fix. As it was, we had ruled several things out but were still left with no real answers and an impossibly tiny baby girl.

Read part 3 of Madeline's diagnosis story here.