Thursday, February 7, 2013

Congenital Heart Defect Awareness Week!!

Congenital Heart Defect Awareness Week is February 7th - 14, 2013!  Obviously that's something very important to our family.  Be honest, until Eli was diagnosed & you got information about him, how much did you really know about congenital heart defects?  We didn't know much.  We had no idea how often they occurred, how much they affect the whole family, how much they cost us, and had no idea these kids could be as strong as they are.  Now we know.  And we're still learning.

To celebrate CHD Awareness Week we're doing a lot of things.  First thing we did was get a proclamation from the mayor of Washington, Indiana recognizing this week as CHD Awareness Week in our city.  I attempted to get one from the State of Indiana, but they require notification 6-8 weeks prior and my request wasn't in time.  I submitted it anyway, but haven't heard anything about 2013.  Now I know what to do for 2014!!!!

The four of us receiving the proclamation from Mayor Wellman.  Thank you, Mayor and City of Washington!

We also created some fliers that contain a lot of information about CHDs.  It explains what they are, some statistics, ways to help, and also includes our story although we didn't identify ourselves.  We did that because we want these fliers to be about CHD info, not about the Veale family.  The fliers are at several places of business throughout Washington.  A big thank you goes out to Craney's Body Shop, Senior and Family Services, Cullen Medical, Old National Bank (east branch), Dr. James L Simpson, DDS, Daviess County Abstract Company, Exhaust Works, Knickers & Petticoats, Mi Pueblo, Tara's Day Salon, and Wichman's Landscaping for letting us leave the fliers for their customers to see.

We submitted a copy of the proclamation, the photo of us receiving the proclamation, and the informational flier to the Washington Times Herald in hopes they will print something during the week.  We haven't heard anything from them about how, when, or if the information will be used, but we're hopeful of their support for CHD Awareness Week.

On Wednesday, February 13, Bryan and I will be on a local radio show to talk about Eli and CHD Awareness Week.  We'll be on WAMW's Take 5 for Your Community with DeWayne Shake.  I think we're both a little nervous about that!  We'll get through it though because it's only 5 minutes & it's for a wonderful cause!

If you're a follower of our blog, you may have noticed a different background, layout, colors, and photo additions.  I was so excited when I found this heart background to use and it didn't look too "girly" for my testosterone-laden family.  Another thing we're working on is a Facebook page for Eli's MVPs.  I'll post more about that later (mainly because I'm still trying to figure it out myself!).  Our intention is to use that for a quicker way to update family and friends about things we wouldn't necessarily blog about.  We'll also have some information about a fundraiser for Eli's MVPs, so all of you who keep asking what you can do to help will find out a way very soon!

Some CHD families are promoting this week of awareness by sharing fellow heart families blogs and/or Facebook pages, so we may have some new readers here.  If you're new, thank you for checking in on us!  Here's a little background on our family:  Bryan and I married in 1999.  In 2007 we were blessed with Zachary Glen.  In 2010 we had another blessing join our family, Eli Mark.  Both pregnancies were normal, both labor & deliveries were normal (not EASY! but normal).  When Eli went for his two month check up, Bryan and I had a list of things that we were concerned about.  Individually each item didn't seem like a big deal, but combined we knew something wasn't right.  When they weighed him, we found out he had lost weight and was actually below birth weight.  The next 24 hours were crazy as he was admitted to three different hospitals as we began to unravel the puzzle he presented.  Our final destination was Peyton Manning Children's Hospital at St. Vincent in Indianapolis.  We were told he has multiple heart defects.  We didn't have many options.  His condition was quickly deteriorating so the only thing the doctors could recommend was surgery.  He underwent his first open heart surgery (a modified Norwood) on Jan 10, 2011.  He had a 30% chance of not making it out of the OR and if he did live through surgery it was expected he'd be on a heart-lung bypass machine.  He made it through surgery and was NOT on bypass.  We were elated!  Our sweet little boy was alive and doing better than anyone could have imagined.  We still don't know how he made it though the first ten weeks of his life without being diagnosed, but we are so incredibly grateful that he did.  Eli had a feeding tube placed on Valentine's Day 2011 and his next surgery, the Glenn, was September 1, 2011.  He did very well from that.  We are now about to begin echos, EKGs, etc to start preparation for his Fontan.  As of now his sats are in the mid 70s so if we were betting, his surgery will be this spring, although it could be as late as summer.  He will also have a pacemaker placed during his Fontan because he's been in a junctional rhythm since his Glenn.  He has been though speech, physical and occupational therapies, although we do not need to utilize any of those services at this time.  He's a busy two year old who adores his big brother, likes to play ball, and is fascinated with trucks, trains, Elmo and Pablo (from the Backyardigans).  To read the full version of the beginnings of our story click here.  If you want to read more specifics about his heart defects and his surgeries click here.  If you want to know how his feeding tube works click here.

Thanks for reading and caring about us.  We'll be posting more this week to increase Awareness about Congenital Heart Defects!

1 comment:

  1. Go Eli! You are a rock star! And so is your amazing mommy! :) Love to the Veales from the Kinnairds.