Saturday, December 8, 2012

His Heart

December 7th, 8:00 p.m.

Aaron's heart cath is over.  He seems to have tolerated it well.  Now comes the big decisions.  It seems that in looking into the heart itself, things are much clearer, and different, than they've seemed with the echos.  Or it may be that it's recently changed.  Whatever it is, it's not the same (mostly) benign issue that we thought he had before.

I'm still trying to figure this all out myself, and I'm liable to use terms without defining them.  This is mostly so I can try to figure out what's happening, and make a record of it.

This is what Aaron's heart looks like and what is now happening with it.  A normal heart doesn't have the hole where the red and blue blood mix.  And his echos have previously shown that the blood wasn't mixing much at all because the pressures between the two sides was fairly equal.  Now the game seems to have changed, drastically.

Aaron has a hole, or rather a few holes in his heart.  There is one moderate-sized one in his ventricular septal wall (VSD) and a few smaller ones in his atrial septal wall (ASD).  Frankly, I don't care much about his ASDs at all.  In "normal" people, ASDs don't cause issues until the 40's or 50's.  Given that the oldest full Trisomy 18 person was a girl who lived into her early 30's, they're not a concern to me.

But the VSD, yeah, that one's causing some problems, and it looks like they're pretty big problems, too.  See, he's shunting (sending blood) from the left side through to the right side, where it then circulates back into the lungs again.  This puts more stress and pressure on the pulmonary arteries, which causes them to become stiffer.  Stiff arteries are not good, not good at all.  Like, very, very bad.  And once they stiffen, they don't "unstiffen."

But if they've become too stiff already, closing off the VSD could also be fatal.  So there's some hard decisions to be faced.  Do we do a surgery or not?  Will they even offer it?  Or is it too late already?  And yeah, once again, I'm feeling kind of brittle and fragile.  Just yesterday, I was thinking that I had finally hit my stride again, almost three years after his diagnosis.  (That's a LONG time to recover from childbirth, in case anyone's wondering.)  I should have known better...

10 p.m.
The cardiologist came in and it looks a bit bleaker.  He said that once he ran the numbers, it became apparent that his arteries are already pretty stiff.  He did say that sometimes, sometimes, it gets better.  But at least for now, surgery is not an option.  He said there may be some other options, and that for those "normal" people who have a VSD that is missed until too late to repair surgically, they often live into their 20's and 30's.  That's still quite a ways off.  But then, before he was born, I remember thinking that if I could just have four months, that was a long time.  Now, 2 1/2 years isn't nearly long enough. 

Anyway, we'll have to wait and see what Aaron's cardiologist says.  And now, I'm going to bed.  It's been a long day, and I'm ready for it to be over.

When you are a mother, 

you are never really alone in your thoughts. 

A mother always has to think twice, 

once for herself and once for her child.

Sophia Loren


  1. Oh I felt so nervous reading your post! I'm sorry Aaron is not a candidate for surgery right now. I know how hard that is. I am praying that Aaron's arteries will change - or that he will continue to live for years inspite of the VSD. (And in spite of sicknesses or anything else.) My initial prayer was that I could just bring Lilly home. But then got her for 17 months. Not long enough. But it is never enough! Thank God we have the hope of heaven and being reunited. I know you cherish every minute with Aaron. Give him a hug from "Lilly's Mamma!" God bless you - I am praying.

  2. We love you, Aaron, and your whole family! Hugs and Prayers comeing your way!

  3. Oh, Rebekah . . . my heart goes out to you and your family.