Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Thursday, February 2, 2012

The Faces of CHD (to honor American Heart Awareness Month - February)

In the past few months I have learned more about the heart and heart defects than I have learned in my entire life.  I've learned things I can't believe I now know!  I watch Lang and Altman (the cardiac surgeons) on Grey's Anatomy and I now can understand what they're talking about!  Not like that's anything amazing... but before Trey's heart condition - it was all just jargon to me.

I've started following blogs of sick children, periodically stop and pray for them during the day and am wondering how families I've never met, but follow through blogs, are doing now that they're out of the hospital.  It's a totally different understanding.

I've learned to survive in a NICU/PICU/hospital.  Heck, I lived at Children's Hospital with no TV and no food or drink allowed in the room for an entire week.  The whole time just watching my sick child suffer - totally unaware that he was most likely having small heart attacks and slowly falling into heart failure.  I watched my child's blood come out of his body through tubes, passing through a mechanical pump and lung and then returning to his body through his open chest.  I watched my child get soaked in blood when he started bleeding out of control (thank goodness I wasn't totally aware of what was going on until after the nurse had gotten it under control!  His gauze had already been a little bloody from the surgery and I had been warned he'd bleed due to the heparin, blood thinners, he was receiving so when it was dripping down the sides of him I just thought it was "normal"... as if there's such a thing!).  All of this has changed my view of being "sick."  I can now see it through an understanding.  I always knew it must be difficult to see your child like that, to live that way... but now I really know.

My child is my hero.  All my kids are my hero in different ways - but Trey... he's caused me to really want to change myself physically.  During the past 4 weeks I've been doing the Couch to 5K running program.  I am so not a runner.  I've always hated running.  My shins and ankles hurt when I run.  Well, Trey's hospital is sponsoring an 8K in April and I am going to run it (well, run as much as I can by April!).  I've always been a walker.  I can walk fast but I am now challenging myself to go beyond myself... and run.  I went and got fitted for running shoes through a running store, I downloaded a podcast on my iphone to help me train and I just started running.  And do you know what?... I can run!  My shins have been doing fine, my ankles are good and I'm enjoying it!  I really like running after dusk (I run the main road up and down in the streetlights on the sidewalk) so that people can't see how much I'm suffering and when I feel like I'm just going to fall down or give up... I think of Trey.  If he can make it through heart surgery, ecmo, open chest, drug withdrawal, a feeding tube for 4 months and painful reflux... I can learn how to run.  I can push myself past what I thought I could do and better my heart as well.  Heart Disease is the #1 killer for women in America.  Exercise can help prevent it.  I can definitely better myself for him - because he did it for us.  We are so much better because he is in our family.

Anyhow, I'm moving away from the point of my original post.  According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)  February is American Heart Awareness month and, specifically, February 7-14 is Congenital Heart Defect Awareness week.  In honor of this, 3 heart mommies...

Ruth from A Trip to Holland
Becca from The Stanley Clan and
Stefenie from When Life Hands you a Broken Heart

... have set up a Pinterest board to highlight "The Faces of CHD."  It is a virtual bulletin board of children (and some adults) that have had their lives changed through being born with a heart defect.  It's amazing.  It really is incredible to see the pictures of all these amazing children that have gone through so much in their short lives.  Not only that but the amount of different heart defects that are out there is mind boggling!  This little organ in our body can create so many problems (granted - it's one of the most important organs in our body to keep us living so that makes sense - but it really is a simple machine - it pumps blood through our body, that's all - but there's so much that can go wrong with it!).

So please, hop over to The Faces of CHD and check out the pins.  Everyone of them has a story and it's an amazing one.  While you're there you can see Trey's picture.... a proud survivor of a congenital heart defect.  He's come SO far in such a short time.  My little heart hero....

To any new readers... Trey was diagnosed with ALCAPA (a RARE congenital heart defect... 1 in 300,000) at 11 weeks late afternoon on September 12, 2011.  He had a heart catheterization procedure to double check the diagnosis on September 13 and the surgeon cleared his schedule to operate on Trey early the next morning, September 14.  ALCAPA stands for Anomalous Left Coronary Artery from the Pulmonary Artery.

Basically, the coronary artery normally comes off of the Aorta and supplies the heart with the oxygen enriched blood it needs to survive and do it's job.  Trey's coronory originated from the Pulmonary Artery instead.  The Pulmonary Artery takes blood that is deprived of oxygen (after it circulates the body) back to the lungs to pick up more oxygen.  Therefore, Trey's heart was getting blood that contained no oxygen and therefore, the left side of the heart (the side of the heart that pumps the blood through the entire body) was essentially dying.  He went into the hospital with his heart working at 7% (ideal is 70%).  He was in severe heart failure.

In order to fix the problem he needed open heart surgery to move the coronary artery from the Pulmonary Artery back to the Aorta.  Sounds easy, right?  Not always so easy.  Unfortunately, where it has to be connected is towards the back of the heart so when the heart is placed back into the body the surgeon is unable to see if the tiny coronary artery is kinked or not once the blood starts pumping back through the heart after surgery.  So they do all of the plumbing work but once it's back in they're blind to if it's actually fixed or not.  A kink meant - he would probably not survive.  Thankfully... Dr. Irving Shen rocked the surgery and all was fixed the way it needed to be!

This blog documents Trey's (and my family's) journey through the entire hospital stay.  I blogged my way through a month at Inova Fairfax hospital and the past 4 months of recovery at home (on a feeding tube... now completely weaned off of!).  To read our story from the beginning click here and then keep clicking on "newer post" at the very bottom of each post.

1 comment:

  1. Thanks for sharing Trey's story my friend! :-)