We have created this page to share the life of our son Evan with friends and family.

Evan was diagnosed with a congenital heart defect called tricuspid atresia with levo transposition of the greater arteries. Have a look around the site, learn about our lives with Evan, and watch him grow up.


Join us for the Congenital Heart Walk

Posted on January 15, 2016 by William No Comments

 Please consider joining Team Evan for the SW Michigan Congenital Heart Walk! All funds raised benefit CHD research and programs led by The Children’s Heart Foundation and the Adult Congenital Heart Association. Both are great organizations dedicated to helping children like Evan from CHD prevention through adult care.   Event Information: When: Saturday, May 21, […]

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1 Year Fontaniversary

Posted on September 15, 2015 by William 3 Comments

This past Friday, September 11, 2015 was Evan’s 1 year “Fontaniversary.” It sounds silly, I know. It was one year ago that Evan had the last open heart surgery that he needed to “correct” his heart. It has been a quiet and uneventful year…thankfully! Today we had followup appointments in Kalamazoo and at Mott Children’s […]

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Happy 4th Birthday Evan!

Posted on July 20, 2015 by William 3 Comments

It has been nine months since our last post, oops. No we weren’t hibernating, just having fun. Sorry about that. Evan has been doing great! First and foremost, he hasn’t had any health problems to speak of, just the normal little kid stuff. He graduated from occupational therapy where he was being treated for his oral aversion. […]

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Nearly 6 Weeks Post Fontan and Doing Great

Posted on October 19, 2014 by William 3 Comments

There isn’t a lot to report but I wanted to share a couple things and some pictures. It was mentioned in the last post that Evan had some post op fluid accumulating around his lungs and in his abdomen. I’m happy to say that his follow up appointments have been great and the fluid is more […]

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Feeling good and then… more fluids…

Posted on October 2, 2014 by Sarah 2 Comments

Evan has been doing pretty good since we’ve come home.  We had an appointment last Friday to have his chest tube stitches removed and although he freaked out, he was fine in the end. Evan still receives 50% of his nutrition through an overnight tube feeding.  We were giving him formula made with Nutramagen but it really […]

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Hail to This Little Victor

Posted on September 22, 2014 by William 4 Comments

We are scheduled to bid Mott adieu Monday afternoon!!! It has been 10 days since Evan’s surgery and he has done really, really well. So well in fact that mom and I are a little nervous about it but I can’t argue with his progress, he’s doing great! Since our last post his chest tube drainage […]

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Probably the most you ever cared to learn about drainage

Posted on September 17, 2014 by Sarah 5 Comments

More of the same has been happening around here. Just basically waiting for Evan’s drainage to slow down to a level that they think is acceptable.  Evan always has a bit of a pleural effusion because he suffers from congestive heart failure and we manage it at home with diuretics.  Finding the balance of what is […]

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Recovery is going well

Posted on September 14, 2014 by William 4 Comments

The first 24 hours after surgery were difficult for Evan and for us. He was not comfortable and not feeling well, It was difficult to see him like that. He was coughing quite a bit and that was really painful. He was on meds for pain but the coughing was definitely too much. I think they […]

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A September 11 to Remember…again.

Posted on September 12, 2014 by William 4 Comments

Nearly everyone remembers where they were on September 11, 2001. I was at work, at a graphic design company, my mom called to tell me that a plane had just hit one of the twin towers, the office was in shock. How many of you will remember where you were on September 11, 2014? I […]

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Fontan a SUCCESS!!!

Posted on September 11, 2014 by William 7 Comments

Success! He will be in recovery for another hour or so before they bring him to the ICU and we’re allowed to see him. I’ll post more details later, I just wanted to get this out quickly. We could not be more happy and proud of our little man, he did really great.

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