Overnight Progress & Today’s Plan

There’s a rhythm that has emerged in the goings on here on the PICU. Typically they try new things during the day – vent settings, new meds and the like – and then spend the night letting Julia rest and regroup, making only small adjustments in a “steady as she goes” attitude. So the rhythm […]

Marathon

Hey everyone! Sorry for the radio silence. Jocelyn, Julia and I got the rest we needed last night and the day is progressing well. But before I get into the details of today, let’s get a little recap of yesterday. (ed. note – For the uninitiated, some of the pics at the end of this […]

We Have A Dream

I suppose I’ll never understand on this side of eternity why one is given a certain burden and another gets something totally different. Fortunately, there are plenty of blessings and encouragements mixed in – if you’re watchful – to take some of the edge off. Nonetheless, no one would have convinced me or Jocelyn five […]

Ready to Rock…

It was a busy day for Julia at Children’s Hospital of Michigan as she went through all of the Pre-operation screening. Bottom line, she’s been cleared for the surgery scheduled for Monday. Let the prayers shift into overdrive… NOW! That’s the happy ending. The day didn’t start out with the sweetness and light we would […]

The Gift of Prayer

Our family got a beautiful gift from some friends today. Apparently, the plan was hatched a few days prior when some of the staff of my church decided to set some time aside to pray for Julia and her surgery (and for her parents to come down off the ceiling). The debate still rages on […]

A Heart Doctor’s (and a Dad’s) Prayer

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 […]

Eight is Great! Celebrate!

Hey everyone – just a short note of celebration! We took Julia into Dr. Weinhouse for her last consult before surgery and she is continuing to do great. She gained another seven ounces, which far exceeded our wildest hopes and put her well past the eight pound milestone. Like I said a week or two […]

Preparations

Yesterday, we met with Dr. Weinhouse, Julia’s cardiologist for a longer-than-normal consult. She continues to do very well and gained another four ounces. But we are shifting from maintenance mode to preparation for the surgery, which is less than three weeks away now. We did another echocardiogram and EKG so that the surgical team at […]

Dare to Ask

If you’ve been following our story over the past couple of weeks, you’ll know that we’ve been dealing with kind of a roller-coaster regarding her weight gain. It had come to the point last week that were resigning ourselves to the idea that her heart condition was making her progressively more tired and unable to […]

Finding Her Smile

Julia has made some great strides and had an adventure or two this week. It seems like she has learned to do so much in the last couple of weeks that we need to take a moment and celebrate. One of the big ones is that she has found her smile and is using it […]