Tag Archives: Children’s Boston
The unforgettable ride.

The unforgettable ride.

Two years ago this week, our 9 week old daughter Eve was lying peacefully on our bed.  It was one of those rare, but happy weeks when she was home from the hospital.  Her mitral valve leak was “moderate” when we were discharged….down from “severe” during those first few weeks.  We were just so desperate to bring our new baby home….relatively speaking, we were very, very new on our CHD journey.  I was going to start changing her, when my husband and I thought she was breathing a little heavy.  As had become our routine, we grabbed the stethoscope to check her heart rate.  No need to start the stop watch.  It took only a couple seconds to know she was in SVT – Supraventricular Tachycardia. During episodes of SVT, the heart’s electrical system doesn’t work right. In her case, her heart rate would soar up to 280 beats per minute.  Most episodes of SVT are caused by faulty electrical connections in the heart.  In Eve’s case, in addition to her mitral valve defects, she had Wolff-Parkinson-White syndrome – and that was causing her chronic SVT, happening 20 times a day at its worst. We had learned in the hospital what “tricks” could be used to help pull her out of these heart-racing episodes.  Pushing her knees up to her chest, ice across her eyes and nose area.  These would usually work, although in her early hospital bouts with SVT, she was almost always given the drug adenosine which ran right into her line – a straight shot to jolt the heart back into rhythm.  We had seen SVT often enough that we were quite calm about it.  Even when we couldn’t get her heart rate to come back down, we calmly got our coats and shoes on, grabbed a bag and headed for the hospital.

It was about 10 minutes into that 20 minute drive.  Even though it was dark in the van, I could tell her skin had changed color.  She stopped moving.  I put my hands on her couldn’t feel her breathing in her carseat.  I started to panic….telling my husband to drive faster.  I unbuckled her and held her in my arms – in a car going 80 mph down the frozen highway.  If she was going to die, I was going to be HOLDING her, not WATCHING her strapped in a carseat.  I prayed.  Hard.  Just let her be OK.  PLEASE…I will do anything. Quietly, I started whispering that mommy was there and everything was going to be OK.  I said “I’m sorry”….over and over.

Once we got to the ER, the docs started working on her.  They tried the ice.  No.  Then they tried putting her whole head and upper body into a big tub filled with water and ice.  No.  Then again.  Still 260 bpm.  Then they started trying to get a line in her to do the adenosine.   She was always, always horrible to get a line in.  Tiny veins…most of which had been annihilated by all the IVs and PIC lines during her ICU stays.  They handed her to me with a towel, she was freezing cold and limp…and I started whispering again.  This time: “Mommy’s still here.  It’s not time to leave.  Slow your heart down and come back home with us.”  I started reciting “Brown Bear, Brown Bear” in her ear…her favorite.  I can picture all of this like it happened yesterday.  After about 30 seconds, like magic, we watched the heart rate monitor pop back down to 130.

We actually ended up going home that morning.  She started to get her color and vitality back – and docs didn’t think we needed to stay since we were scheduled for our cardiology appointment 2 days later.  It was at that appointment we found out that Eve’s heart had plummeted back to a 4+ leak and was summarily admitted to the ICU for an extended hospital stay.  She was in heart failure.  During the following 7 weeks, she would be home with us a total of 9 days, including the few days leading up to her trip to Children’s Boston for her ablation and open heart surgery.

Since we had to stay strong for Eve and our other children, I’m not sure Paul and I ever truly absorbed what happened that night – or really much else leading up to and through her surgeries.  It’s survival mode.  Heart families everywhere get that.

But this past weekend, when I looked at the calendar and realized it was the 2nd anniversary of Eve’s christening – and approaching two years since that horrific car ride to the hospital – I had another meltdown.  I prayed that we would never experience that fear again. I prayed others who know this fear may have peace in their journeys.  And I prayed that we never forget the debt we owe.

Eve’s life – and the talents of her medical teams have given us the unique opportunity to know more and do more.  It is because of her that 1in100.org and Facebook.com/1in100 were founded. She has even helped ensure that soon every newborn in this country will be screened for heart defects before leaving the hospital.  We are profoundly grateful…

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.