Day 7-Big sister, Grandma and Grandpa visit

Today has been a bit of a blur, because Arwen finally came down to visit! Been two weeks since I have seen her, I forgot how much she talks. Should mention that Ruth and Dan came down as well J. Arwen has been a little intimidated by all of the activity and equipment around Anya, but with the second visit she seemed a little bit more comfortable. She is here for a week so she has some time.

On the medical side I am not sure what to say. Last night and then again this morning Anya’s heart rate went through the roof (SVT for the clinical folks in the audience). It is considered benign, but since it happened a few times they did an echo to check on it, but we do not have results yet. The first time it happened they did a work up including a chest x-ray, when they moved her to put the plate beneath her the heart rate went down to normal. The joke became that it was a ‘therapeutic chest x-ray.’  All of tests other than the echo have come back normal, and everyone told me that for something to show up on the echo would be really weird. Since it improved when they moved her they thought that it was positional, the ECMO tubing or something else was putting pressure on the heart and caused it, but still not sure.  So right now everyone is shrugging their shoulders, and not worrying about it, she has not had any more episodes since this morning and all of her numbers look good. They did have to turn up her ECMO settings back to where they were, but this is considered normal after a circuit change like she had yesterday. As far as the nurses were concerned, she is still on track and doing well despite the hiccups.

I am not sure why, but in the past few days she has started to look a lot healthier to me. She always looked better than I expected her to, but the last few days there has been an improvement that is difficult to describe. She responds like a normal baby, curls her fingers around mine, today really opened her eye wide and looked at me, concentrating as long as you can expect a newborn to. (I say eye because one eye is still swollen and difficult for her to open, that side is always a little down to accommodate the ECMO tubing, it will get better when we can move her more) When she is sleeping she is peaceful. Maybe it is me getting used to looking past the tubes and wires, but I believe it is more than that.