Settling In

We have now had two full days at home. Eden is much more comfortable here than she was in the hospital, but you can tell that she is not fully sure she is safe. She is finally sleeping and even eating some (which she was NOT doing in the hospital), however, I am still needed at her side almost all of the time. It breaks my heart to think that she has to regain trust in the security of her surroundings. Does she think we may whisk her away again and take another organ? I even had to take a bath with her this evening, one of her 'old' favorite things to do. My mom is still in town, but leaving tomorrow. Eden won't allow her too close either. I sometimes want to say, "I'm just a little girl too, she's a real mom." Brian's mom, Susan, arrives tomorrow and we have weeks of family scheduled to help out.

Our first appointment back in the clinic went very well. Eden didn't much like being awakened or told that we were heading back to the hospital. She especially didn't like giving more blood (they will do this at every visit to test the level of her anti-rejection medicine), but was an old hat when it came to giving vital signs, laying for the echo, and doing an ECG. The staff was so pleased to see how well she was doing and all of her tests looked great. She will continue these visits twice a week for the next three months, during which time they ask us not to travel and that we still stay within an hour of the hospital. The transplant coordinators have been absolutely wonderful. We have been assigned one to follow Eden for the rest of her life, but have already grown attached to them all. One is on call at all times and I have probably overused this privilege - luckily they say it is expected that the new transplant families will check-in about every little thing.

Eden is confusing to read right now. One moment she is happy and silly and full of energy, then the next is all tears (a lot like her mother, but with less energy and more tears!) They say that her body is having to adjust to a new/good heart. All of her organs are learning how to function with good blood supply and I assume that her energy levels are a reflection of this adjustment. She was literally doing laps around our coffee table this afternoon, but ended the night with throwing up in bed just as she had fallen to sleep. The medicine is the most stressful. Fortunately, Eden has taken medicine her entire life; however, none as critical as her anti-rejection meds. These are to be given at 8am and 8pm - on the dot! - forever. When she vomits as much as she has been, we worry about her levels and the possibility of rejection. This, too, just needs time. We are learning how to "sneak" the poor tasting meds in her mouth. Since they can't add flavor to a few of them, we inject two syringes at once. One with the medicine and the other with chocolate syrup or a melted popsicle... this is working over half of the time :).

If you have made it this far, thanks for reading and thanks for allowing me an outlet to express all that is happening in our very small portion of the world. As I said in an earlier email, I have not yet stopped to breathe that sigh of relief. I am overwhelmed with emotion and mostly consumed with gratitude... for the family who offered us such a gift, for the doctors and nurses that made this possible, and for Eden's strength and will to survive - not to mention all of you that have flooded us with love.