Still Going Strong

This picture was taken this morning and should give you a good indication that Madeleine is doing very well. You can see in the photo that Madeleine is still intubated. The doctors were hopeful that they could remove the tube yesterday but were concerned enough by her afternoon X-Ray to delay until today. The X-Ray has already come back today and Madeleine could be extubated as early as this afternoon. (There's a small chance it could get delayed until tomorrow but this isn't a concern-- she should be off soon enough.)

Here's the game plan for today:

1) Extubate: This could occur as early as noon today.

2) Feed: The doctors will begin feeding with breastmilk 6 hours after extubation. Most likely, she'll be fed this evening.

3) Removal of surgical wires. Madeleine has one pacing wire remaining in her heart and the doctors expect to remove it.

If we meet these three milestones today, it would be a GREAT day and Madeleine would be close to returning to the NICU. Over the next week, the remaining goals would include the following:

1) Slowly increase feeding to reach Madeleine's full caloric intake.

2) Slow weaning from the nasal canula. (The breathing tube will be replaced from the canula.)

3) Removal of the arterial line. This will be removed once the doctors are convinced that she won't need additional breathing support. (As early as Friday).

4) Return to the NICU-- could occur on Friday but also possible to be delayed until next Monday.

There is one disclaimer to this entire message: Every date/timeframe is subject to immediate change and slowing down isn't necessarily bad. The largest concern remains infection and that will be the biggest thing that the doctors worry about throughout the next few days and weekend. If we can make it through the weekend without an infection, we're probably close to out of the woods and can begin focusing on other worries.

One of the questions that I've been asked is "With the heart fixed, is it reasonable to expect to see a faster recovery?" Our answer is a firm "Maybe." Long-term, the heart surgery will allow Madeleine to grow and we're expecting great results. (We'll know more about the surgery's effectiveness when they do an echocardiagram next week.) In the short-term, it is possible that Madeleine's body will struggle with the new heart and the doctors refer to this as a "breaking in period." The analogy that I've used (and haven't shared with the doctors) is an alcoholic that quits drinking and starts eating healthy food. Obviously, this will improve the person's health in the long-run but the first few weeks can be very difficult. Its still too early to know if Madeleine is going to struggle with the heart (though all signs indicate she is doing great) so while we fully expect a full turn-around and long-term success, we can't predict when she'll begin to thrive and grow.

That's all for now. We hope that our next post will report that Madeleine has been extubated and is prepared to begin feeding. Thanks again for everyone's support. Kirsten and I are beginning to breathe a little easier and its feeling good. Take care,

Kirsten and Brent

PS- Check out the new pics on the side of the blog as well.