Thursday, February 18, 2016

Day 18 - Elisyn

It's hard to believe that we started this journey with our CHD warrior 5 years ago.

Now here we are celebrating her 9th birthday!

In China, there was zero chance that she would be celebrating today.
She wouldn't have made it to her 9th birthday.
It's haunting.

It all started with one look, one photo . . and a lot of hope.

I knew nothing about congenital heart defects.  If you had shown me the abbreviation CHD, I would have been clueless about what it meant.  An echo would have looked like some sort of alien being.

But over time you learn and it becomes less frightening.

Recently, we made the trip for her cardiac clinic appointment.  Days leading up to this appointment are often filled with anxiety.  And I know this is true for so many CHD parents.  You are basically waiting to hear the news of how your CHD warriors heart and lungs are functioning.  Having a cardiac team you can trust makes all the difference.  And we are blessed to have such an amazing team for Elisyn!  

Sometimes, the news isn't what you always want to hear.  This past visit we realized that one of the things we have been watching over her past few years has worsened.  Was it unexpected, no.  We were well aware that in the future as her body grew, her muscles grew, that she would need "touch ups".  I am sure you are wondering what this means for Elisyn.

Well, right now she has a conduit.  There was stenosis at the base pretty much from the time she healed from her OHS.  But it has been monitored and this visit we found that it has worsened and that we are getting to the point of needing to find the "fix".  But having the team we have, they don't jump into decisions.  They consult, they observe, they do the math to figure out how quickly this is happening to know when we will get to the "needs to be done now" mode.  This is somewhat frightening for us knowing how her body has reacted in the past.  But we will keep the faith, because without it . . there would be no balloons today.  No celebration of LIFE .  .

So on Elisyn's 9th Birthday, I ask you to take a look at the faces on the side of the blog . . ask your agency if they have any CHD children waiting . . advocate for a CHD child waiting . . support a CHD foundation . . just consider the possibilities . .


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