A So-So Weekend

First off-- thanks to all that sent Mother's Day wishes to Kirsten. It was a unique Mother's Day as one doesn't expect to have to visit their child in the hospital on Mother's Day. Still, we had a nice day hanging out with Madeleine.

In terms of Madeleine's health progress, this past weekend was largely treading water. We're a little frustrated with the slow progress and I think that Madeleine's quick recovery from surgery led us to believe that she was ready to take off. As we continue to learn in the NICU, progress is a roller coaster and we're sliding just a little bit. Still, there's nothing serious to report-- there's no infection to speak of-- so we're confident that the past few days are a mere speed bump. Here are the specifics:

- Madeleine is still on a relatively high nasal canula setting-- 6 mls and around 40% oxygen. An X-Ray on Saturday revealed that Madeleine's right lung was partially collapsed and they increased the flow a bit to help "blow it back up." Sunday revealed some progress and we haven't heard anything further yet today. We spoke with one of the cardiac surgery fellows as well as the attending doctor and they reassured us that this is common for patients after the AV canal surgery, especially with children with Down Syndrome. The nurses hope to slowly wean over the next few days as the lung issue resolves itself.

- Feeding: Madeleine's feeds were increased to 2 cc's every 3 hours and we're hopeful that the feeds will begin to increase a little more rapidly. Its possible (likely?) that they'll be hesitant to increase feeds until the lung issues are resolved. Additionally, we've been warned that as feeds increase, they may have to go up and down as Madeleine's gut gets used to feeding again. So far, they haven't seen any signs of residuals (inability to process food) or the converse-- dumping-- where the food just passes through the gut without digestion. If either condition arises, we'll figure it out.

- Future surgery-- we raised the issue of when the gut would be reattached and got the standard response of "it depends." We have a family meeting scheduled for tomorrow afternoon so we'll push a bit more. The basic thought that was expressed yesterday is that if Madeleiene's feeding increases as we hope in the next 1-2 weeks, and if she starts gaining weight, the surgery would likely be scheduled around the first of June. Additionally, Madeleine would have to dodge any infections and other complications. Since we know how up and down the NICU can be, we know that a June 1 timeframe is tenuous at best but it at least gives us something to shoot for.

That's all for now. I'll get a report from Madeleine's nurse around noon and I'll relate anything that's groundbreaking. Enjoy the Monday-- we're just hoping it stops raining in DC.

Kirsten and Brent