9 Days Old (Christmas Day)

Original Text of an E-mail from Douglas to Family/Friends

Alexandria had a pretty good night last night with me, she was up a lot, so her days and nights are definitely mixed up.  Everyone else woke up around 7:30 or so and took Alexandria so I could sneak in a nap before the 10am service.  We held off opening an presents and got to church a little  late after wrangling the 6 kids (our 4 and Michael & Lisa’s 2) together.     We re-affirmed Alexandria’s baptism in front of the church and she wore her Christening Dress that Kimberly bought for her.  She looked beautiful. 🙂   A great moment for us as a family.  When we got home we took a picture of the whole family, all 6 of us in front of the tree.  It was bitter sweet to get a family picture in front of the tree and know it will probably never look as complete in the years to come.  We ate lunch, put everyone down for a nap (including me), and ended up opening presents around 4pm.   After an incredible turkey dinner that Kim put together, got the kids to bed for the evening and relaxed with Michael and Lisa and a movie.

Alex had a little more difficulty maintaining her blood oxygenation yesterday (Christmas Day).  A normal oxygenation level is 95-100%, below 90% is considered low.  Alexandria’s pulsox monitor is set to alarm when she goes below 75%.  Sometimes this just happens when we move her and the sensor gets confused temporarily.  She went below 75% for a few moments here and there yesterday.  When I describe her as having “an episode” it means that she’s dropped below 60% and remained there for some time (usually several minutes, sometimes much longer).  When we were in the hospital she had many episodes where he oxygenation was below 15% and her heart rate, which is normally around 135 bpm was below 30 bpm, some that lasted between 30 minutes to an hour.  In reality she would be so close to death and then her body would “reset” and come back.

When my mother was in hospice, in her last days, I stayed with her for 10 days before she passed.  In those 10 days we were able to talk and have some final closure about things between us over the years.  We said what needed to be said.  We had our first communion together.  In our conversations there were hints that she felt guilty about dying, about not being able to be here with us and Aden.  I always dissuaded those comments, made sure to communicate that it was not her fault, but in private I begged God to heal her.     When Alex would start an episode at the hospital I was right back there, feeling the feelings I had holding my mother in my arms while she died.  The only difference was I couldn’t be quiet.  When Alex would turn blue and come so close to passing, I begged her not to go,  I begged her to stay.  I feel a little guilty about that.  I don’t want to prolong her stay if she’s uncomfortable, but I just couldn’t take her leaving then….  I need more time.  But I’ve often wondered if I begged mom to stay if we’d have had a few more days.

I’m never going to have enough days.