Wednesday, October 19, 2011

What it's like: having a child with congenital heart defects

I've waited a long time to make this public.  At first, it was because we didn't know how serious it would turn out to be, and it could have been a relatively simple fix.  Heck, it could have fixed itself.  But it didn't.  So here's the breakdown.  When Riley was less than 24 hours old, David and I were told that she had a medium sized Ventricular Septal Defect.  It was terrifying.  It felt like someone had ripped the bottom from our world when they told us.  I'll never forget sitting next to David after the doctor left our room.  The expression on our face was one of pure shock.  How could Riley possibly have something wrong with her, she looked perfect.  Our pediatrician came back to see us later, and talked some of our fears down.  At that time the diagnosis was a 6 mm hole in the wall separating her right and left ventricle.  Sometimes, the hole will close up on it's own.  In those instances when it doesn't, and surgery is required, it can be put off for years as long as symptoms don't become present.  On August 16th, I took Riley to see her cardiologist for a routine checkup.  At this appointment, we discovered that the hole was larger, over 7 mm and another defect was found, a problem with her mitral valve.  Surgery was talked about.  We knew if it didn't start to close up on it's own that this size hole would need to be fixed with surgery.  We knew the call would be made at her 6 month visit.  So David and I began to mentally prepare for open heart surgery in January.  On October 12th, her cardiologist said that he could feel her liver, a sign that it had enlarged.  This is a direct problem of her VSD.  I had also noticed some changes in her breathing while eating, another symptom associated with VSD.  Now surgery is next month.  David and I are traveling to Duke Children's Hospital to meet the surgeon. We'll schedule the surgery that day.  Miss Riley will be in ICU for a couple of days following surgery, then moved to a regular room before being released.  It looks like we'll spend at least a week at Duke. All in all, it's terrifying.  I think about my baby, less than 4 months old being hooked up to a bunch of machines.  I think about her possibly being chemically paralyzed while in ICU.  Doesn't that sound lovely.  I think about being there when they put her under and then having to walk away.  It's more than I think I can bear, but I do.  And then, I think about Hannah.  Mostly about being there for her less as I tend to Riley.  David has thrown himself into work.  Sometimes I look at him and can see him completely zoned out and I know what he's thinking about.  Through all this, an amazing support group has surrounded us.  Now, if we could be a little better about accepting help, things might actually get a little easier!  This is our life for the next couple of months and I hope that you'll all take a minute and pray for my family, if you're the praying type, because this is certainly the hardest thing we've ever faced.  

1 comment:

Anonymous said...

This is certainly the biggest burden you've had to endure. I know there are no words that can ease your pain and worry. Just know that David and I agree with you in prayer that the surgeons minds and hands our guided by our Father. That he removes obstacles and provides the necessary care that Riley needs. we are praying for a complete healing, Amen. We love you and pray everyday for Riley and you guys. My friends and small group are praying as well. Can't wait to here the stories of her and Hannah as they get older, to be sure there will be plenty of funny things to share.
We love you, Aunt Ginny and Uncle David.