This really suctions

Dear Madeline,

It's been a full week since you were admitted to Hopkins Hospital   You've had some ups and downs, but I guess that's the way it goes for cancer survivors and I need to learn to expect and accept them both.  Your ups and downs lately seem to center around this darned NG tube.  You did well with it last night and all day today.  Your only major gripe today is that you wanted to be held... a lot.  No one here would refuse to meet that demand. 

You've had another rough couple of hours, though.  As the day wore on and the afternoon began to surrender to the evening, you became vocally agitated.  After giving you a few boosts of your pain meds, we ruled out pain as the reason.  It wasn't too loud or too bright, and you were otherwise cozy in my arms.  Then you kicked that cry in, the one that says "I'm so hungry!! What's a gal got to do to get a meal around here?"

So, after we suggested that maybe you were anxious for a feeding for the first time in a week, we tried for hours to get your tube clamped and the OK to give you a little pedialyte.  Yeah, your old man started spitting tacks trying to get these folks on the stick.  Three (!!!) hours later, we got the go-ahead to give you the bottle, and you were just in such a state that when those few drops hit your mouth, well, I think they landed directly on your gag reflex.  After getting you cleaned up, you were clearly exhausted and ready to just call it a night.

I won't forget the look on your face, though, and I pray to God that I simply confused it with fatigue.  But, angel, I thought I saw a look of resignation on your face tonight, and that just broke my heart.  For all of the other dramatic emotions I've experienced this week, tonight was the first time I felt the pang of discouragement.  Tomorrow is another day, my beautiful baby, and we get to try again.  I'll pray for better outcomes.

Love,

   Daddy