The Wrong Kind of One-percenters

There’s a secret part of all of us, and not so secret for some, that wishes they were part of that elite one-percenter club. Those ~34k affluent families enjoying a luxurious lifestyle. We are not that kind of one-percenter (to the shock of no one who knows us). We’re in an even MORE exclusive club […]

Ho, Ho, Hope!

The last week and a half have been quite a roller coaster with Hope. Our last glimmer of hope of coming home for Christmas was dashed as Hope continued to have runs of a-tachycardia, which she needed to be treated with an IV anti-arrhythmia med that can only be administered in the CICU. So we […]

Over the River and Through The Woods To The CICU We Go!

This week has been rough on Little Hope. Really rough. It started with such potential. We were full of nervous excitement as we watched Hope on Sunday, curious if she would give us a reason she needed to stay in the CICU. Sunday night she gave us the first inkling of what the next few […]

Getting to the Step Down: Take Two

It was not all that long after transplant that the CICU started throwing the words “step-down unit” around sending both John and Hope into a panic. Hope went from possibly going to the step-down unit last Monday to buying herself another week in the CICU with atrial tachycardia. We progressed through beta-blockers (esmelol, propranolol) and […]

I got 99 problems, but a PIC aint one

All you have to do is say the Q-word (quiet) and Hope is almost sure to respond with a new ride on the Heart Rollercoaster. As much as we hoped to have a quiet weekend, Hope had something different in mind for the holiday week. On Monday she was supposed to go in for her […]

P.S. Forever Thankful

On a more serious note, I’m sure many of you are craving, just like we are, more details about the origin of Hope’s donor heart. We are given extremely little information about the donor out of respect for the grieving family. We don’t know how old the child was, the sex of the child, the […]

No More Achy Breaky Heart

Hope finally ditched her achy, breaky heart in the wee hours of Monday morning. The surgery team literally tossed her old heart in a bucket and sent it down to pathology where it will be studied and go in a library of other baby hearts – kind of creepy, but cool! Her anesthesiologist told us […]

Heaven Sent Hope