Day 41- Bizzare

Have I ever really talked about how BIZZARE it is to be in Florida?

It is beyond crazy. For those of you who don’t know, I was raised in a little house in St. Charles, MO near St. Louis. I have never lived in any other place; when I got married we lived for a short time in an apartment that was in a different zip code, and it was a bit disconcerting. I didn’t go away to college.  I did have a month long trip to Beijing in college, but other than that and a few other short trips, I have never left my hometown. I sincerely consider where we will live when my kids are in high school, so they could go to the same high school I went to (and that my parents went to, and my grandparents, aunts, cousins, you get the picture).

I remember distinctly the thoughts that went through my head when I learned of Dr. Kays and the care at Shands; it did not take me more than five minutes to decide that we were coming down here. At the time I thought we might be down here six months based on other stories I had read; nevertheless my brain sprang into action, planning travel, what we would need to bring, what I needed to do for insurance, bill paying, etc.

I spent months saying goodbye, even for a short time, to all the places and sights that I was used to, not to even mention the people! NO ONE moves away in my family, we just don’t. I had a pre-Florida ‘bucket list’ to do with Arwen to complete. I coached myself that I needed to expect that my life would be really weird for several months, but eventually I would be home. Life would settle into a new normal.

As bizarre as it is, it is wonderful. Adam is with me; home does not feel far away when he is with me. Arwen is coming to visit in a few days. Today could have been very disappointing but it wasn’t to me. It was its own milestone in a small way.

Anya’s vent settings have been weaning down steadily over the past few days. This afternoon they had considered extubating her, taking her off the vent. Right before they were planning to do this Anya had a hissy fit not unlike how she had been acting yesterday, dropping her oxygen. Dr. Kays was there, and looking at her, said she wasn’t ready to extubate yet. He turned up her settings, and my good natured, wide eyed baby came back, replacing the irritable, agitated baby she had been. I am so relieved to see her comfortable again!

Ever since Anya came off ECMO I have been casually discussing discharge stuff, life when she was older, life with two girls. It was implied that she would do fine from this point. Dr. Kays did not need to tell me that she was going to survive, but today he did.

Even with all the frustrations we have gone through, and what we can still expect to go through, (for a LONG time), looking back to where we were to where we are now is amazing. Anya went from a baby who may have had problems so devastating she could not have survived outside of the womb, to having such severe CDH that some doctors would not give her any chance, to a real, live baby with a personality. At this point it is a forgone conclusion that she will get off the vent. That we will go home. Bizarre. So much more bizarre than being away from home, in the best way.

We are blessed.

I guess I should order her some furniture now. J