Let me just admit at the outset that this post isn’t going to turn out like anything I had planned. Most of you who have been following this story know Dr. Weinhouse and what a caring, marvelous man he is. (ed. note: for those of you who haven’t had the pleasure, you can get caught up here and here.) All I was going to do was share his kind words of intercession and call it a night. Apparently Julia and God had other ideas.

First, the pragmatics: Julia is continuing to feed astonishingly well – so much so that she’s starting to get a little cranky when we aren’t there with the warmed bottle in hand and a burp cloth draped over our arm. Even this evening, Jocelyn was upstairs and I was consoling our ravenous little girl, even though there should have been at least thirty minutes before we would have expected her to be hungry.

So there I sat with a howling Julia on my knee trying to figure out if it was her hiccups or actual hunger that was the source of her ire. You get pretty inventive after a while trying to find ways of distracting a fussy child. Start with one position, shift to another. Jiggle her on your knees, then change to the football hold or throw in a light stroke under the chin. In moments of desperation, I’ve even gotten up and swayed with her (a sight that only my wife will ever witness – it’s not pretty).

Her diatribe was at a peak when, in a moment of inspiration, I slipped a finger between the buttons of her sleeper and traced the line of her breastbone. Her perfect… scarless… breastbone. Ugh. Blindsided by feelings that I don’t want to deal with right now. Push it down. Push it down…

I got up and fixed her a bottle – partially to distract my thoughts of fear and anticipation, but mostly because the hiccups had subsided and a process of elimination concluded that she was hungry. Julia continued to find new expression for her fussiness, but her frustration ended completely when I was finally able to sit and let her feed.

And as I looked upon that satisfied, angelic face, the ache of a father’s uncertainty came back.

This isn’t fair. No child deserves to have her chest cracked open…

but thank God that they can fix the ailing heart it contains.

Will she come out of this with her innocence intact?

I took it all in and breathed it all out with a watery-eyed prayer of desperation. Lord, please help us.

I offer you this prayer of a heart doctor with a big, big heart. And whether you believe that we are knitted together intentionally or are simply a random collection of very well-ordered organic molecules, I ask that you be in agreement with the spirit of his prayer…

Elliot’s words are our words…

Anna Adonai, Hoshiana – Dear God, help us

No truer, more heartfelt words have been uttered in this whole adventure. I pray it as I consider the unknown of the next couple of weeks. I pray it as I run out of ways to distract a fussy infant. I pray it as I move through my day, trying to stay coherent on four hours’ sleep.

Anna Adonai, Hoshiana – Dear God, help us

Jocelyn and I would love for you to join us in that prayer over the next couple of weeks. There will be more news forthcoming on what can be expected and how I’m going to be modifying the website so that you can get real-time updates during the days of surgery and hospitalization. But none of that matters but for the providence and power of the Infinite Love who is mindful of us even when it doesn’t feel like it. None of that matters but for the love and support we have felt from you.

Thanks again.