Test Results and Decisions

Yesterday was an exhausting day.  Check-up for me & Elliana, pre-surgical appointment for Seth (hernia repair), and then a phone call from the doctor. 

The doctor, Dr. Nitsche, had the results of the amnio.  He said that there appeared to be an extra piece of a chromosome.  They couldn't tell what the extra piece was, so they had Jason and me come in for some bloodwork.  Dr. Nitsche is hoping that they'll be able to use our blood to determine what the extra piece is. 

I guess we have the beginnings of a diagosis.  We know there is a chromosomal disorder, but we don't know exactly what it is yet.  Whatever it is, it's rare.  It may be unique to our girl.  The prognosis doesn't sound any better than it did a week ago. 

Jason and I are still struggling with how to manage these next several months of pregnancy.  My OB, Dr. Dillard, briefly talked to me about what would be coming in the next several weeks - some difficult decisions: 

Do we want the doctors to follow Elliana more closely through the remainder of my pregnancy than they would a 'healthy' baby?  If they start to see her showing signs of distress, do we want them to deliver her early and do what they can to help her?  Or do we want to allow 'nature' to takes its course?  If she's delivered full-term, what kind of measures do we want them to take?  Life-saving surgeries?  Or do we want them to just let us be with her for whatever time she has alive? 

I never thought I'd have to make decisions like this.  Whether to do everything we can to help our little girl live, or let her go to be with Jesus.  We know that, ultimately, whether she lives or dies is not our choice.  But we do have to tell our doctors something.  I think we're both hoping that clarity will come with more information about Elliana's condition.  But even once we know and have made decisions, I think I'll STILL struggle.  I can see myself believing wholeheartedly that we should fight for her and do everything we can to save her, but then the next day, believing wholeheartedly that she would be in too much pain, that I'd rather spend her hours or days of life holding her close, and then letting her go.

Sometimes - most of the time - this feels like too much.  It's too difficult.  It hurts too much.  I just can't do this.  And then sometimes, I feel small shreds of hope.  Sometimes, hope looks like Elliana beating the odds and thriving.  Or the ultrasound and the diagnosis being wrong.  Sometimes, hope looks like spending the remainder of this pregnancy with her purposefully, as if it's all I have with her.  Talking to her, singing to her, shopping with her, as weird as that may sound. 

You know - who cares if it sounds weird?  I'm past weird.  Carrying a baby with a 30% (or less) chance of survival to term is insane.  Lovingly insane.