3/18 Another Good Report

This is a disclaimer for this message: The NICU is a roller coaster ride and we know that difficult days lie ahead.

Okay, with that disclaimer out of the way, we're having a very good day in the NICU. Here's the run down from our meetings with the various doctors and nurses:

1) The heart is indeed doing much better. The cardiologist confirmed this morning that the PDA is closed-- not slightly open-- so this is great news. There is always a chance it could re-open but they think that the surgery caused this the last time. Barring any other surgeries-- and there are none planned in the short term-- we're cautiously optimistic that this won't be an issue. Additionally, the cardiologists at Children's talked with the cardiologists from Holy Cross and they are convinced right now that the clot-- they now call it a thrombis-- is stable and should continue to decrease over time. In a while-- don't know a specific timeframe-- they may suggest aspirin to help it dissolve but right now, they don't think it is a major concern. Of course, Madeleiene will need surgery for her AV canal but we're talking months (probably 4-6 mos at a minimum) until any such surgery would take place. That "phew" sound you heard in the DC area was a collective sigh from Kirsten and myself. Madeleine will have weekly echocardiagrams to monitor to heart issues but right now, we're not expecting anything further.

2) We've passed the 72 hour surgery recovery window and there is no sign of infection. This is great news. Of course, there is always a concern for infection in any NICU child-- any child for that matter-- but right now, the doctors don't see any signs and are very happy. They decided this morning to keep Madeleine on antibiotics for the next 14 days-- just as a precaution given the large surgery-- but they're hoping that these can be discontinued after two more weeks.

3) We discussed with the doctors the process for extubation. At this point, Madeleine is breathing room air (no oxygen) and is breating, for the most part, over the vent meaning that her body is doing more work than the respirator. She is still on dopamine for her blood pressure and given the proximity of surgery, they prefer to wait a day or two more before they extubate. They'll reevaluate this decision tomorrow but right now, we're hoping that she is extubated by Friday. This would be yet another step forward so we're cautiously optimistic.

4) We asked about any further issues with NEC and right now, given Madeleine's strong recovery, they are cautiously optimistic that the NEC is over. We'll know more when we can gauge Madeleine's reaction when she begins feeding but, given the severity of Madeleine's NEC and the importance of keeping her stable, they're not going to reintroduce food for at least two more weeks.

5) The intraventricular hemorraging (IVH-- brain bleeds) are also decreased as the brain scan conducted yesterday showed that the bleed itself has stopped and the benign cyst has decreased in size. At this point, they'll continue to monitor with weekly brain scans but the doctors are cautiously optimistic that she has passed any further concern for IVH.

6) We raised the issue of Retinopathy of Prematurity (ROP-- eye issues with premies) and the doctor explained that this is caused by over-oxygenition for a premature baby. (I was mistaken when I wrote that early introduction of light causes the problem.) Since Madeleine has only received minimal levels of oxygen, the doctors don't believe this will be an issue but all premies are tested for it and Madeleine is scheduled to be tested next Tuesday. The doctor explained that 30% of all premies in the NICU have some form of ROP, with the most severe 5% receiving laser treatments to correct the problem. We're hoping Madeleine, for a change, hangs out in the majority group and we'll find out more next week.

That's it for right now. In case you're keeping score at home, there is no bad news for today. Again, its the NICU so we're trying not to get too happy/far ahead of ourselves. At the same time, we kinda enjoy feeling good and today is definitely a feel good day. I'm going to post this blog right now and when I get the camera from Kirsten, I'll try to post some pictures-- we got some good ones today.

Have a great day!

Brent and Kirsten

PS-- We must say thank you to all of you that have been praying, thinking of us, and/or supporting us in other ways. The list is too numerous for me to thank all but I'll send a few specific thank yous: Dawn-- the turkey ziti is delicious and we're looking forward to a few more lunches of it. (the cafeteria food isn't too hot.) Emma-- thanks for knitting the hats. You'll all see the pictures of Madeleine with her new pink hat. Steve, Becky, and Chuck-- you guys were great last Saturday night helping us get through a few difficult hours. Everyone else that has posted-- thanks as well. Your support and friendship continues to humble us.