Going Great

As you can tell from this picture, Madeleine continues to be happy and is doing great. In fact, you can't tell from the picture but her hood is up because Kirsten brought her outside yesterday to surprise me when I got home from work. She was sitting in her chair playing when I walked up. Not a bad way to come home from a day of work, eh? As I promised weeks ago (yes-- I've been chided for not blogging/posting pictures and am trying to get better), I've posted a number of new pictures to our picasa site. Check in this folder for new pictures from Kirsten's Uncle Joel's visit. I've created a new folder for April and hope to add pictures from my parent's visit last weekend. We'll also upload some pictures and likely even some video this weekend as Kirsten's parents are in town. The pictures tell most of the stories about Madeleine so check back for lots of cuteness.



As far as medical updates go, we have a great report for you. Kirsten and I took Madeleine to a doctor's appointment with her surgeon yesterday. Dr. Gengalewski (I love Polish names!) is a great surgeon and knows Madeleine from her intestinal surgeries a year ago. We reviewed Madeleine's progress and Dr. Gengalewski agreed that it is high time to get rid of the feeding tube in Madeleine's nose. She also agreed with us that it makes sense to insert a PEG feeding tube directly into Madeleine's stomach and also to reinforce the valve connecting the stomach with the esophagus. (This is called a Nissen or Nissen fundoplication procedure.) The benefit of doing the Nissen is that it will protect Madeleine's airway by preventing her from refluxing food back into her esophagus. The surgery will also benefit Madeleine by removing the feeding tube from her airway, thereby reducing irritation and secrections caused by the tube's presence. In short, we can expect to see even better GI and pulmonary performance once the surgery and recovery is complete. The other obvious benefit of the surgery is that Madeleine won't be able to pull out the PEG (or will have to pull MUCH harder). This is great for us since right now, we have to take her to the hospital every time she yanks on the feeding tube and dislodges it. We love Children's hospital but I'd prefer to not be on a first name basis with EVERYONE working in the X-Ray department. :)

As with any surgery, there are some important risks. Most serious is Madeleine's pulmonary hypertension and the possibility that the surgery could trigger a crisis. The doctor's don't think this is likely but PH is something that they never take lightly. Additionally, the recovery period can vary greatly depending on a ton of different factors. If all goes well, we're hoping for a short 3-5 days in the hospital. Right now, we're targeting May 15 for the surgery date and we'll have a number of doctor visits before hand to ensure that Madeleine's whole team of doctors agrees that she's ready for this surgery. We're pretty confident that everyone will be in agreement but we're not taking anything lightly when it comes to Madeleine's surgery.

As you might be able to tell, Kirsten and I are a bit worried but we're also excited because this is a big step forward. Once Madeleine has recovered from the surgery, we expect her growth to continue to improve and we think that the PEG will make everyone's lives much easier. Additionally, with the timing of the surgery in mid-May, we'll likely still be on target to start weaning the ventilator at some point in June-- likely late June. We still have tons of hurdles to clear but we feel like yesterday was a great step forward.

That's all for now. Please check back soon for further blog updates and pictures.