Day 4 - Two Steps Forward, One Back

In our world, where minutes pass like days, it seems like eons since I have last updated.

One step forward (literally):

Eden took her first steps on Saturday (3 days post-transplant). The first attempt was just a brief moment of standing and then later in the day she walked the length of the CICU hallway. As you can imagine, this was a huge accomplishment with nurses cheering on either end. This morning she did the same and then upped the ante in the afternoon by completing a lap around the entire unit. She is motivated by the chance to see other babies, learning their names and checking out their toys, etc. The best, however, was the sight of Porter (my parents' dog) playing Frisbee in the parking lot out the window.

Second step forward:

After several days of medication weaning and therapy adjusting she has gotten to a much more independent state. She only has one line placed in her groin for the last IV med - I should clarify that she is still on several medications but they are now at an acceptable dose to be given orally. Her pace maker wires have been completely removed and O2 is used intermittently. These are all great strides which also qualify her for a move to the CPCU (the Cardiac Progressive Care Unit) and which have spurred talk of a discharge as early as this coming Wednesday. Can you believe that?? THIS WEDNESDAY! Yikes...

One step back:

Eden got a fever. Out of the blue, but not completely unexpected, Eden's temperature began to rise. This is scary for many reasons, all of them relating to rejection. She has had two days of a very strong immuno-supression which removes the body of all white blood cells and is due for another day of this tomorrow. Meanwhile, we have been on a higher alert of germ precaution. They are still unsure of the cause and will know more tomorrow with the results of some blood testing. We are strongly hoping that the fever was related to the ATG (the immuno-supressent) and not an infection or worse, rejection.

This is where we can use your focus. Rejection of Eden's new heart will be a concern for her entire life, but the fear is greatest just after transplantation. Without going into too many more details, we would really appreciate your thoughts and prayers to get us beyond this initial setback. Thank you.

Please enjoy some photos of Eden's first steps.