Lots of Information

First things first, Madeleine is still resting peacefully and is recovering well from Saturday morning's surgery. That's the best possible news that we could get and we are extremely pleased to see her progress.

With that in mind, we met with a whole host of doctors and nurses today and we learned a great deal. In no particular order, here's my notes from the day:

1) Infection is still the most important concern and the good news is that, at this point, the Doctors don't see any sign of infection. She is resting peacefully, is not running a fever, is not dependent on the respirator (more on that below), and her blood gas tests are still extremely positive. The attending physician, Dr. Baumgart reported that most preemies have acidic blood readings after surgery and it is a good sign that Madeleine doesn't have this issue. She regressed a little with the weaning from Dopamine as the doctors want to ensure that her blood pressure remains high. Their concern is that her blood pressure must remain high to counteract the diversion of blood caused by her AV channel heart defect and the fact that the PDA is open (as of last Saturday's echocardiagram).

2) The doctors are not focused on removing Madeleine from the ventilator for at least the next few days. They reassured us that Madeleine is on an extremely low setting and could be extubated but the Dcotors prefer to keep her extubated to ensure that Madeleine does not have to worry about breathing. Instead, they want her to be relaxed and comfortable and in a few days, they'll begin to consider extubation. At that point, they will also have a better idea on what heart issues must be addressed.

3) Assuming Madeleine comes through surgery without any further complications, the heart is next focus. We learned on Saturday that her PDA (ductus) was reopened and we're hoping that results of today's echocardiagram (it was completed at 3PM) will demonstrate that the ductus is closed again. This would be great so that we wouldn't have to worry about surgery in the near future. If not, we will need to consider surgery as the open PDA diverts blood away from the gut and puts her at risk of not recovering fully. Further complicating matters, a cardiologist today mentioned that they may consider doing the PDA ligation while also surgically repairing Madeleien's AV channel. In relative terms, the PDA ligation is a minor surgery while the AV channel is a major surgery. One would tend to think that Madeleine is too small for major surgery but the other thought is that if we're going to go through heart surgery, why not knock it all out of the park. I'm obviously not learned enough to make this decision but there is a team of cardiologists and surgeons that are meeting this evening to discuss Madeleine's case. We'll most likely get their recommendation tomorrow morning-- apparently, they make a preliminary decision in the evening and then sleep on it before finalizing the decision the next day. (Try that approach with your boss-- "yeah, I've made a decision but first, I need to mull it over for another day.") While the waiting game isn't a lot of fun, we're sure to get the recommendation tomorrow and can move forward. (All of this discussion is moot if the PDA closes itself. It already closed itself once, so lets hope this happens again.)

4) No heart discussion would be complete without mentioning that troublesome clot. We don't know how it is behaving today and the echocardiagram should let us know. Its probably the most serious hurdle facing Madeleine but the doctors can't do much about it. If they go forward with the AV channel surgery, they would likely remove the clot. Barring that option, we can ask if they would ever consider using a blood thinner. Right now, we don't think this is an option but perhaps in a few weeks, they could re-consider.

5) The gut and the heart are the two main concerns right now but there are a few more things that we discussed with the doctors. (You wouldn't expect Madeleine to make it clear and simple, would ya?) With all premies, the doctors are concerned with brain bleeding (the technical term is intraventricular hemorraging or IVH). Madeleine has had limited IVH as reported a long time ago, she had a Grade 1 brain bleed and cyst. Grade 1 is the smallest type of bleed and is considered medically insignificant. Of course, there is always the chance that such a bleed can increase in size and we're awaiting results of a test taken today to determine any changes.

6) Another problem that all premies face is called Retinopathy of Prematurity or ROP. This is caused by the overdevelopment of retina muscles due to the introduction of light at an earlier stage than in full length pregnancies. In most cases, ROP is fully treatable and many premies don't even get ROP. Our experience has been that Madeleine likes to try out all of the tough premie options so we're just trying to see what could next appear as an issue. The doctors aren't looking for ROP yet-- an opthamologist will most likely analyze Madeleine next week. We're really hoping that we don't have to deal with that issue.

7) NEC (I never thought I'd hate an acronym that much) is also still a concern. It is unlikely, but possible, that NEC could re-occur. That would be extremely rare and even worse news so that's all I will say about a full re-occurence. A more possible option is called stricture where a previously damaged intestinal area restricts itself, essentially getting smaller. Any area that becomes restricted would need to be removed, most likely at the same time that her small intestines is re-attached. We're hopeful that this won't be an issue for Madeleine as the surgeon was confident that all NEC affected areas were removed. Still, its something still on the worry table.

That's about all of the worries that we've documented. Short term, the goal remains pretty simple: Madeleine needs a few more boring days to ensure that she fully recovers from surgery. Once that occurs, we'll need to make a decision about the heart and determine if any surgery is warranted. Once that is done, we'll turn our focus to re-introducing food (probably two weeks away) and we'll deal with any of the issues listed above should they arise. One other note: given all the different doctors and specialists that are focused on Madeleine, we're expecting to schedule a team meeting for the end of the week. Such a meeting will be held to ensure that all doctors are in agreement on the appropriate path forward for Madeleine. If surgery is an immediate option, we'll use this meeting to let all doctors lay their opinion out. We expect to rely on the doctor's expertise but, as the parents, we must consent to any surgery and we want to ensure that all are in agreement with the best path forward.

That's all for now. Kirsten and I are feeling more human and we're beginning to make plans for the long haul. We're both starting to figure out when we'll return to work and hope to start making plans that forecast past the next 24 hours. We're not there yet but we'll get there soon. Enjoy the rest of your St. Patrick's Day!

Brent and Kirsten