Friday, June 3, 2011


And now I know. Yes. June will be painful.

Last year, we medically transported Miles from Chapel Hill, North Carolina to Ann Arbor, Michigan at the end of May after almost 4 months in the UNC PICU. We went to Ann Arbor in the hopes that one of the top pediatric cardiothoracic surgeons in the country would be able to help our Miles. Miles' complete heart repair operation happened on June 1, 2010.

So there it is. June. June 1. That's the day that they came to the waiting room after Miles had been in surgery for hours; that's the day they told us, "It's rocky down there." And we sat and waited, crying, waiting, envisioning Miles fighting his fight. That's the day that the heart repair ended up going "well," they said...but that's the day that Miles wasn't able to come off the bypass machine.  That's the day that Miles had to be supported by ECMO--the baby heart bypass machine that took Miles' blood and oxygenated it, doing the work of the heart, before giving his blood back to him.
That's the night that Mitch and I went in at 2 am to see Miles after surgery. There he was, our sweet Miles, tough and beautiful amid all the chaos. Despite all of the pain medications, that's the night that Miles wiggled his little hand and raised his arm a little bit when he heard his daddy say, "Good job, little man. I'm proud of you."

We still had hope. He just needed time to recover from surgery and then he would get off ECMO, we hoped. For days, Miles continued fighting, kept working on his purple paci, tolerated yet another heart surgery, peeked his eyes open at us. Looking back, of course, this was the time that everything fell apart.  All the way to June 16.

And so June is painful. Miles went through so much, so much, so much to not get to be here now. It will never be right.

1 comment:

  1. Oh I'm so sorry for all that you and your precious Miles endured. You're right it will never be okay or make sense all that he went through during his life. Thinking of you & your husband as you relive this time last year and those memories come flooding back. Praying for strength and continued hope in the days ahead ((hugs))