Great Weekend

Kirsten and I had a great weekend hanging out with our daughter. It was fantastic to relax with her without having to drive to the hospital. She continues to grow and amaze us with her alertness and her sheer will to keep moving forward despite her small size and medical challenges. We, in turn, have been amazed by her fun demeanor-- she's a natural at peekaboo-- and we're really enjoying the chance to be full time parents.

We've spent most of out time hanging out at home and learning to adjust to having an infant in the house. Our dogs haven't really figured out what is going on-- they take turns staring at her and smelling her and both are a little more protective-- the mailman has been the victim of a number of outbursts so far. We've taken two excursions and that has gone well. Last Friday we took Madeleine up to Kirsten's parents' boat on the Chesapeake north of Baltimore and Madeleine handled everything really well. We were concerned about pushing her too much but she just handled everything in stride. On Sunday, we took Madeleine to the National Arboretum and toured the grounds. (If you've never been, you're missing out-- it is a great place.) Again, Madeleine handled the movement well and we're hoping to continue to get out of the house on a regular basis as it helps keep us sane.

As far as the medical challenges are concerned, we feel like we're making really good progress. Madeleine continues to be on breathing support but at a very low setting and she isn't having any major episodes. We have a monitor that tracks breathing and heart issues and it hasn't gone off for days. When it did go off the first few days, the episodes were minor-- there are varying degrees according to the beeps-- and we're feeling really good about her progress. We visit with the pulmonologist next week on the 17th and we'll find out what the long-term plan is for breathing support. We're thinking that we'll keep the support going for the next few months but hopefully no longer than that. Its not a major issue-- just more of a convenience factor.

The one area that we're a little concerned about is feeding as Madeleine is struggling with some pretty bad reflux, aka baby heartburn. The biggest problem is that the best drug for reflux is Reglan, a drug that increases motility. Unfortunately, the doctors don't want to increase motility as they want food to move as slowly as possible through the gut, thereby enabling her to gain weight as fast as possible. Since she's dealing with reflux at nearly every feeding, bottle feeding isn't going so great. At this point, its not a major issue as we can feed her through her tube but we eventually want to remove the tube. Kirsten is meeting with our pediatrician today and is going to discuss possible solutions. We don't think its a long term problem-- just a short term pain to resolve.

Madeleine's getting weighed today and we're hoping that she cracks the 6 pound limit. Kirsten's also taking her to see the surgeon today and we'll discuss the plan for surgery. We're currently expecting to schedule the surgery once she weighs twelve pounds so we likely have a while until that happens.

Other than that, we're just going to try and enjoy our little girl and watch her grow. I'll post pictures this evening and will keep everyone informed of any progress. Thanks,

Brent