A crazy place called home

I fully expected that I would still be posting most days for a while after we got home. I knew there would be a lot of adjustment involved so I didn’t think I would post every day. I thought I was fully prepared for the unexpected, if such a thing is possible. Ha!

I knew having Anya home would be a transition, I just didn’t think about it being a transition for HER. It took us several days to figure out the balance of activity and the flow of her oxygen to keep her comfortable. Unsure whether home is more stimulating, the altitude is just different enough to bother her or what, but Anya has needed more oxygen. Several times in the first few days she became very irritable; she became sweaty, pale, and limp while she cried. She would do this occasionally at the hospital, but then I had a monitor. There is no monitor here; although it hardly matters, we can tell that she is working hard and feels terrible without it. The past few days we haven’t had any paleness with crying, so I think we have figured it out. My heart is still up in my throat when she cries though!

Monday we met with our pediatrician, and Friday we go to the Newborn Medicine Clinic at Children’s; I am excited to get all of the caregivers in place. There are a lot of aspects to Anya’s care that need to be managed, and it is not clear yet who will manage what. Dr. Kays will always be involved in her care; we have an appointment with him in March. For simplicity’s sake we need to have doctors here who are familiar with her. The Newborn Medicine Clinic will hopefully help us organize her therapies, as well as specialists as needed.

The whole weekend was really weird. It doesn’t seem like we have been gone that long. It still does not seem real that we are home, but the reality of managing two children, one with special medical needs, as well as having one adult working make it more real. Last night Arwen was running around the house with her pant legs rolled up, working on getting ready for bed with Adam. I was in the bedroom folding laundry with Anya sitting propped up in my lap, and I thought: Finally, this is the point I had hoped to be at. This is what we have been working on for so long. Thank you Lord!