Getting Ready to Go Home (Again)

Madeleine continues to improve and we're hopeful that she will be released tomorrow. The pneumonia is close to being resolved and after a week's worth of tests and discussions with doctors, we've settled on the following course of action:

1) The doctors inserted a nasal "J" tube yesterday afternoon. The tube itself is exactly the same as her previous feeding tube but the major difference is that this tube extends through her stomach into her small intestines. We're going to feed Madeleine on a continuous feeding schedule for 16 hours every day and then will bottle feed her with thickened formual up to three times/day. By taking this approach, we hope to eliminate any reflux by bypassing the stomach and by thickening any bottle fed food, we decrease the risk of her aspirating when swallowing. By taking this approach, we hope that Madeleine will put on weight quickly and we believe that this growth will help her body deal with regular feedings once we switch back in a few months.

2) We are going home with a Pulse oximeter (more commonly referred to as a Pulsox.) The pulsox monitors blood saturation levels and is a good indicator of the relative efficiency/effectivness of one's lungs. We don't plan on keeping a monitor on Madeleine all the time-- this would be crazy as it would beep pretty much any time Madeleine moved-- but we will have it so that we can check to see how Madeleine is doing from time-to-time. Most importantly, when we are concerned with her health, Kirsten and I won't stand looking at Madeleine discussing how we think her coloring is and trying to determine if something is wrong. In short: this should help us monitor Madeleine's health and identify any potential problems early on.

Those are the major changes. We're going to work closely with Madeleiene's team of doctors and we're hoping that these changes will allow Madeleine to grow and avoid future pneumonia episodes. We're going to be home this weekend recuperating and we'll try to take pictures and post them. Take care,

Brent and Kirsten