A Great Day

Thanks to all that showed up yesterday at Madeleine's "coming out" party. Before I provide further details about Madeleine's development (she's looking great), Kirsten and I want to send out a few thank yous:
- First-- thanks to my sister-in-law Sarah Bushey. While raising three kids under the age of 5, she planned a great party yesterday and worked extremely hard.
- Thanks to everyone else that came out yesterday-- it was great to see so many folks that have been invested in Madeleine's life and various medical challenges. At the end of the night, Kirsten and I were floored by all of the different people we spoke with throughout the day and we're awed by the great people we know. Thanks again.

Okay, with that out of the way, I'll provide an update on Madeleine's medical progress. Our primary focus (and worry) has been on Madeleine's feeding/reflux issues. On its own, reflux isn't that big of a deal-- it is essentially baby heartburn and while painful, its not a major problem. Unfortunately, Madeleine's reflux can cause major problems as at times, she is unable to clear her windpipe. The most important concern is that a blocked wind pipe can lead to aspirations of milk into the lungs but this doesn't seem to be a major problem for Madeleine-- she is good at coughing and keeping fluid out of her lungs. The downside is that at times, her blocked passageway can cause her heart rate to drop to dangerous levels. When we left for Michigan, we thought the reflux was under control but it became worse and Madeleine had a number of bradycardia (low heart rate) episodes. We spoke with Madeleine's doctors and were close to returning to DC when we finally figured out a way to feed Madeleine without causing problems.

Our current approach is to bottle feed Madeleine when she shows interest in the bottle but we don't push her-- usually feed just about 15 minutes. Once that is done, we put the remaining formula into a syringe and hook it up to the feeding tube. We allow the food to flow into her stomach until there is about 20 cc's remaining. (She gets a total of 70 cc's every three hours.) With 20 cc's remaining, we take a ten minute break before feeding Madeleine the remaining formula. This break seems to allow Madeleine's body a chance to process food inside her stomach and has significantly decreased the number of bradycardia incidents-- only once in over 48 hours. We expect to have some more rough spots as Madeleine continues to grow but we feel like we've made a major turning point in her feeding regimen and we're hopeful that this will allow her to grow more effectively. In the long-run, we're convinced that Madeleine's reflux will improve and she'll be able to take all her feeds via bottle. While that is likely months away, right now, we're just happy that Madeleine can eat and grow and we'll worry about those other milestones later on.

Thanks again for everyone's support. I'm actually headed out of town with my dad and Kirsten's dad as we're headed to four baseball stadiums in four days (Cleveland, Detroit, Chicago, and Milwaukee.) Kirsten is going to be in Mid-Michigan and she'll continue to Madeleine tour of various family and friends' homes.

Take care and have a great weekend.

Brent and Kirsten