34 Days Old

Alexandria 34 Days Old

Alexandria has been slowly getting worse since Monday.  She has moments of “being fine” though, and for a good part of Tuesday she was good.  She continues to have bradycardia (slowing heart). Yesterday Kim and I noticed that for a little while her hands and arms were almost white.  She has begun “snacking”, eating a very small amount at a time, but eating more frequently… this is because eating is tiring her out.  Last night she had a very fussy time, crying quite a bit, and her heart rate began to rise.  Around 10:30pm or so we called Hospice because her heart rate rose a few times over 220bpm (very high), enough to set off the alarms.  During our conversation with Jessica, Alexandria started to pass some gas.  Kim went to the store and bought her mylicon (for gas) and this eventually helped her calm down.  Our hope is that the gas and anxiety of it is what caused her heart to race so much…  it was the closest we’d come to giving her morphine.  She was crying so much, her heart rate was racing, she seemed like she was in pain…

To complicate things, although I absolutely want her to be comfortable, I can’t help thinking about the feeding tube incident in the hospital.  I ordered that and she had her first close call with death.  I know now that it was a coincidence, but at the time it was devastating and terrifying.  What if I gave her the morphine and she died?  I brought those worries to Jessica’s attention and she assured me that it wouldn’t hurt her.

This was the first time I’d even considered she may die in pain.  When my mother was in hospice she died slowly, but on pain medication, and it was what I would consider a peaceful death.  Last night, with Alexandria crying in pain, her heart racing, the alarm going, I was horrified to think this may be how she passes.  Not quietly in my arms like Mom, but crying in pain having a heart attack.  I do not know how to face that.  It never crossed my mind until late last night, that this… that “that” death was even a possibility.  I will always be there for her, I will always hold her and comfort her, I know I can do that.  But I don’t know how I’m going to get passed this.

On a lighter note, could you imagine almost giving your daughter morphine because she had gas pains?  That’s almost comical.

Tonight has been a good night, she’s got good color, awake and opened eyed.  Kim and I love when she has moments like that.

Gabriel holding a very sleepy Alexandria

Alexandria thinking "You woke me up... oh you are so going to pay for this..."

Alexandria thinking... "Yeah... bring that finger just a little closer...

*CHOMP*