Update from the Past 24 Hours

The past 24 hours has been difficult-- sorry for the lack of an update. I'll list out all of the difficult information etc. but will first say up front that everything is looking alright at the moment. With that in mind, here's the gritty details:


1) Surgery: Madeleine is going to have surgery tomorrow morning. We spoke with Madeleiene's surgeons yesterday and again today and they believe that Madeleine's ostomy (the end of the intestines hanging out of her stomach) is forming a stricture or blockage that is severely limiting her ability to expell waste from her gut. It is possible that there are other strictures inside but they don't see any evidence and feel that fixing the ostomy will enable Madeleine to eat and improve dramatically. Fixing the ostomy is a surgical procedure and the doctors believe that Madeleine is stable enough to handle the full re-attachment surgery. The other option is to fix the ostomy-- essentially open her up, pull out a little more intestine and cut off the end that is causing a problem-- but once she is open, they prefer to re-attach the intestine instead of waiting a few weeks to perform a second surgical procedure. There are obvious risks for any surgery but the doctors seem quite confident that Madeleine can handle the surgery and they feel that, once she makes it through the recovery period, this could accelerate her feeding and overall improvement in the NICU.


2) Infection: Madeleine's nurse yesterday morning was suspicious of infection as she just wasn't behaving the same. (It was the nurse's third day in a row of having Madeleine-- continuity of care is a GREAT thing.) Given her changed condition, the nurse ordered a blood analysis (CBC) and it showed evidence of infection (heightened white blood cell count and CRP-- may not be the right term.) Infection is a constant concern in the NICU (any ICU for that matter) but by catching it early, it looks like the worst of the infection was stopped yesterday by hitting Madeleine with a dose of three antibiotics (Venc, Gent, and something else-- I'm putting these medical terms in for those in the industry.) Madeleine's nurses took additional blood this morning and all of her numbers have improved. There is still evidence of infection so we're not out of the woods yet but we're moving in the right direction.

3) General intestinal nastiness: The stricture/blockage finally reached a breaking point yesterday and Madeleine starting backing stuff back up into her stomach and even out the side of the ostomy. In short: she was filled up with stuff and her body decided to get rid of it through any means possible. Her stomach filled up with nasty green stuff (looked like ground up seaweed) and they're now pumping it out continuously. Initially, we were extremely concerned that this was caused by a re-occurence of NEC-- this would be the worst possible scenario-- but the doctors didn't share our concern and follow-up X-Rays showed no evidence of NEC. For now, the assumption is that the infection is under control and her body is just clearing itself of all the nastiness. (that's a technical term)

All in all, its been a rough 24 hours but we're feeling confident about the surgery and are cautiously optimistic that the surgery will serve as a major turning point in Madeleine's recovery. We're meeting this afternoon in a "family meeting" with Madeleine's cardiologist and neonatologist to review plans for the surgery and to also discuss post-operative recovery and plans for Madeleiene's heart. In short, we're just trying to get a better handle on all of the issues affecting Madeleine's health. Its complicated and difficult but we're doing well (we actually slept well last night) and we really appreciate everyone's support. (On a related note: we've increased the March of Dimes goal to $2500 as we are poised to blow by the $2000 goal).

That's all for now. We'll provide another update once we know more-- if you don't see another posting before tomorrow, expect to see a celebratory post tomorrow afternoon post-surgery. Thanks,

Kirsten and Brent