we're home

as emailed July 24

We arrived home with Moriah yesterday afternoon! We're working at getting settled...lots of appointments/interventions/doctors to contact, and we're working to get our bearings now in the non-hospital world.

Moriah is doing great. She continues to eat well, and slept most of last night. I'm mostly adjusting to having Moriah 'free' of wires/leads/cords...so much fun to hold her without having to worry about things dangling from her body. We're so happy for her to be home. Truthfully, now and then a sadness comes over us...like listening to the doctor yesterday describe the signs of heart failure we must watch for (as heart failure will begin to happen prior to her surgery), or hearing a social worker describe our daughter as having a 'disability' (the first time the word was used), or today, at the pediatrician's, when our doctor embraced us and said that we have certainly been given more than our fair share of burden to carry. These are moments when we remember that yes, we are on a long, long road, and that things are not necessarily as simple as they seem to be.

And so we do appreciate your prayers as we continue to love Moriah, and to make decisions for her. We're scheduled for further tests next week, the cardiologist's the week after...within a couple weeks, Moriah will begin to take medications for her heart (the bigger she gets, the more her heart will strain to keep up, until she'll require surgery in order to keep growing). After the cardiologist's appointment in 2 weeks, we'll know more about when her surgery will occur--most likely in September or October.