Tag Archives: Ablation
Eve’s story 2.0

Eve’s story 2.0

Today in 2009, we were far from Minnesota – in Boston.  Eve underwent surgery to ablate an electrical pathway responsible for rampant episodes of SVT (supraventricular tachycardia).  Diagnosed with Wolff-Parkinson-White syndrome a week after birth, these episodes of 280+ beats per minute were wreaking havoc on her already fragile heart.  Any repair to her defective and damages mitral valve would be in jeopardy without taking care of the SVT first.  It was successful.  Few hospitals in the country have EPs that will do infant ablations – only 3 actually at that time, perhaps a few more now.  We are confident this helped save Eve’s life and give her a fighting shot at a lasting heart repair.  She looked like hell afterward.  But in context – we were just so grateful the procedure was a success.  We settled in for the night, looking forward to meeting Dr. del Nido the next day in preparation for her next surgery – in 4 days.  Eve would turn 4 months old, the day before her open heart surgery.

More about SVT: http://ow.ly/4x8hn

Children’s Hospital Boston Cardiology: http://ow.ly/4x8hV

Easter Flashback

Easter Flashback

Before we had Eve, I thought I knew about giving.   Paul and I have been fortunate enough to be involved with a number of wonderful people and organizations over the years.   We’ve been inspired to give more through Smile Network International (smilenetwork.org), Children’s HeartLink (childrensheartlink.org), Adopt A Room (adoptaroom.org), Artspace (artspace.org) and others.

But in my 4+ decades on this planet I have never seen giving like that in the CHD world.   We are closer to many people we have come to know through this journey than friends we’ve known our whole lives.  Many of them we have never met in person.  Yet the bond is just as strong.  Stronger maybe.  Because we are tied together through the gifts of our children and the experiences most of us never imagined we would have.

Last Easter, Paul and I had just flown Eve to Boston for her ablation and open heart surgery.   She had about one week left to live.  It was a time of uncertainty and prayer.  Virtual strangers (who we met through another virtual stranger, online a couple months earlier) offered to pick us up at the airport and take us to Children’s Boston to get settled.   Four days later, the day before Eve’s OHS, that same couple drove back to into the city, picked us up and brought us back to their home to spend Easter Sunday with them.

I find it difficult to even write this without crying.  Ron and Isabelle Ouimette and their little Andre not only gave us hope that Eve could come through her operation and start thriving – but they GAVE.  In every way that matters.  They opened their hearts and their homes to us.  They made us feel “normal” that day, so far away from our other children, friends and families.  They came to visit again twice before we left Boston – as did the “other” strangers Kelli Carlson and her family. (P.S. Kelli too is an amazing advocate, mom to Will and founder of Rhode Island’s Helping Hands, Healing Hearts, www.riheartgroup.com.)

We will never forget the gift they gave us that day.  And I cannot imagine a day when we won’t think of them as friends.  Thank God Isabelle is as passionate as they come in spreading CHD awarness (CHDspeaks.blogspot.com) – it’s easy to keep in touch with her and continue to be inspired.

It’s funny – Easter means alot of things to alot of people.  For us it has become the day before Eve’s life-saving heart surgery.   I don’t have any fancy baskets or dyed eggs around the house this year.  Part of that is just how crazy the last couple weeks have been.  But it’s also because I want tomorrow to be about THE day.  Exactly one year ago we prepared Eve’s 5 medications before bed and got ready for 12 hours of NPO so a team of doctors could open her chest and fix her heart.

Today, we are grateful.  For the true significance of Easter.  And for the other things that make us smile – Sunday dresses, family, friends, cakes, cookies, stuffed bunnies…all the simple stuff that the Ouimette’s went out of their way to remind us of last year.  Thank you CHD friends everywhere.  You give so much more than you know.