Today was the day after a circuit change, so it is to be expected that she take a bit of a backslide. Anya mixed things up by being rambunctious. She was very awake, trying to look around, and moving as much as she could. Sounds good but it kept messing up her ECMO tubing, and at times the system was thrown off because of it. I was at the bedside for about 15 minutes, and it became pretty obvious that I was stimulating her just by being there, and seeing all the staff anxious was making me a wreck. I tactfully asked if today would be a good day to not be around, and her nurse agreed. She assured me that Anya was ok, so we decided to take Arwen to the butterfly house here. It has been difficult for Arwen to be shuffled to and from the hospital, and the NICU really isn’t the place for very young children. I am glad we took her, we were really able to have a good time with her and relax.
As a parent, nothing sucks like being told you have no
place, no role to play in your child’s care, even if only for a day. It is the way it is and I am at peace with it,
it is the price we have to pay for her survival; but I would be inhuman if I
could not say that I am getting tired of being separated from her. The surrealness
of this whole thing is wearing off, and I am just tired.
We went back later tonight and little miss had settled down
quite a bit, and everything was business as usual. They plan on letting her be
and not changing anything much for a day or so to let her recover, give that
small left lung time to expand, so the next time they try her off ECMO they are
more successful.
My fear exactly, I imagine giving birth and handing my little boy over and to be not a part of taking 'care ' of him. It si hard. hang in there, and sometimes having an older kid is somewhat a distraction, I am depending on my older son to keep my sanity. Wishing Anya a very good day and soon to be off ECMO.
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