Thursday, February 14, 2013

Happy Valentine's Day!

Happy Valentine's Day!  Besides being Valentine's Day, today is the final day of Congenital Heart Defect awareness week.  I've posted about the odds of having a child born with a congenital heart defect, and I've posted about the lack of research for congenital heart defects. 

But really this little guy is the heart of the issue, so to speak. What I think is amazing about this cause, is that it directly affects Ronan's future.  Ronan will need further repairs done to his heart.  If the research and field just isn't there, he will have another open heart surgery.  If the research is there, he may have a cath procedure instead.  We are so close, so very close, to having a repair procedure that can be done in a cath lab.  Maybe it will be an outpatient surgery.  At this point, I'm probably dreaming, but still, this is what research dollars could bring this adorable little valentine.

The whole day before Ronan's open heart surgery was a blur to me.  You know first hand how many pictures I take of this young man every day.  The day before his surgery I did not take a picture.  Not one.  Even though I felt that Ronan was going to be OK, I kept thinking, what if this is his last picture...  I just couldn't bring myself to take that last one.  In hindsight, I wish I had taken just one of his chest, so he would see himself without his "zipper". 

The day of Ronan's surgery, I was so very thankful they took him back at the very early hour of 6am.  I don't think we could have stood the anticipation of the surgery.  For me, the more difficult part was thinking about how Ronan's heart was STOPPED.  There was a period of time where he had no pulse.  His heart did not beat.  Does that mean he was alive?  I don't think I hardly breathed during that part of his surgery.  For me, I felt that if we were able to get his heart beating, we were home free.  Now I realize the most dangerous part is after the surgery, as you are stepping down medication, removing tubes, and extubating. 

What I dread now is those questions that will come later.  Why?  Why, mommy and daddy does my heart not work like everyone else's?  Why do I need another procedure?  Although part of me really dislikes when people say, "at least he won't remember."  I always think, but he will have to be told.  And he will have to be told about his next procedure.  And his next after that.  And, I remember.  Paul remembers.  Our parents who flew out on a moments notice remember. 

When Ronan was in the CV ICU, he had a roommate.  A lovely little baby girl, Ella, who has born with a half a heart.  I've remained in touch with this family...  here is their story.

Happy Valentine's Day!  Please consider children who are born with with a congenital heart defect next time you are donating to a charity.  

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