Monday May 28, 2012

We talked to Dr. Chanani when we got here today about the echo she had done this morning and he said that it was about the same as the last echo from a week ago. While this seemed discouraging at first we began to ask him questions about what that means for her and us as far as the overall picture. First of all, a week with little or no improvement didn't mean anything much to him. Only time will tell when and how much Mallory will heal herself. He again brought up the philosophy of Dr. Kanter. "Let's treat the baby not the picture." The picture only tells us so much ...it is Mallory that shows us her true function.

Based on that theory, our options are more optimistic than we thought. She has to prove she can pee, which we have mastered; Breathe without the ventilator, which we are doing well with so far; and lastly be able to tolerate feeds. We are taking the feeds slow and are at 4mL an hour. This will go up 1mL every 12 hours until we get to 20ish mL. Once all 3 of these normal functions are achieved we can talk about Step Down. So if everything goes as planned we are looking at about another week in ICU.

After moving to step down that could mean another week and a half/two weeks there and then ...going HOME. We will more than likely go home with a feeding tube because she probably won't immediately adjust to bottle feeding and the stomach is the first thing to tire if the heart struggles. The feeding tube also helps her to get the nutrients she needs that she may not be able to get from bottle feeding.

Naturally we questioned how can you go home with a heart that is not fully functional? So, basically kids here are broken up into the Rule of Thirds. A Third get better, a Third maintain with medicine, and a Third require a transplant. Naturally we are cheering for the "first third."

Like most of your body the heart is an amazing organ. With the help of oral medications, basically like what an elderly person with heart failure would take, you can function just fine. Her body would self limit, but she would be close to normal. No track star but no bubble child either.

Talking about Step Down and Leaving is wonderful but also the beginnings of more uncharted roads for us to travel down. We are optimistic and again are very thankful of where we are and the hope we have for our future. Thank you again to everyone for their support and prayers ...they are being answered.

This weeks prayer request is Feed and Maintain.

We are always updating the Flickr page so there are more photos if you wanted to see:

www.flickr.com/photos/mallorykate/

She loves to pull out her oxygen ...and holds her own w/o it!