Posts tagged ‘Fontan Surgery ‘




The randoms


I’ve had a bunch of things pop into my mind over the last few days, and I thought I’d share a few with everyone.  :]

When Ava was little, about a month and a half out of surgery, I finally let a friend hold her.  I never let anyone hold her when she was little.  (For those of you who don’t know, for 8 weeks after open heart surgery you can’t lift the kids under their arms, like you would normally pick them up.  The sternum is cut during surgery, and needs time to grow back & heal.)  So this friend went to sit her up, and grabbed her under the arm and sat her up.  I freaked out.  I was so angry, at myself—for possibly not being clear, and at this person because I knew I had told her that she could not pick her up under her arms. 

Then another time…

I handed her to a friend to hold her, and she kind of tensed up and said, “Wait!  How do I hold her!  I don’t know how I’m supposed to hold her.”  And, at this point she was not fresh out of surgery, and you could lift her under her arms.  I got mad then, too.  I wanted to scream, “She’s a normal kid!!  You hold her like you hold your nephew, or any other baby for the matter!” 

It’s funny.  Both situations were no one’s fault, and both “mishaps” were just that, mishaps.  Funny to think back on.  I expect people to be able to understand, and remember because I have to.  That’s just not the case.  And, in retrospect, I prefer the latter.  I would much rather people ask how they should hold her than to guess and end up hurting her. 

At this point, 4 days away from surgery—we just want it over.  The waiting game is getting old.  We’ve known the date since December.  This week is dragging.  BUT, we’re starting to get….excited?  That’s not the right word.  But when Ava was born we were so excited for the time for the Fontan to come.  It’s the last surgery, the stage 3 of 3 for the “mending” of Tricuspid Atresia.  This is supposed to be…”the end.” (OF SURGERIES!) And now, I’m starting to remember how amazing it is to see pink toes & fingers on your baby.  I’m excited to see her pink fingernails.  No more blue lips?!  Hopefully an improvement in breathing!  Yay!  Good things are sure to come.  (Granted, that’s after making it through surgery and hopefully little to no complications during recovery.)  Anyone affected by CHD will understand that, anyone who hasn’t experienced CHD will think that I am thinking extremely negatively by saying IF she makes it, IF there’s no complications… But that’s the reality of open heart surgeries and kids living with Congenital Heart Defects.

But, here is something that should ease all of your minds.  (The ones who haven’t seen it themselves, and to those of you that have—maybe you’ve never thought of it this way before.)

When you see your baby in the PICU for the first time after open heart surgery they are connected to SO many wires, machines.  IV’s, heart monitors, o2 monitors, blood re-infusions, blood transfusions, brain activity monitors, medicine pumps, etc.  And to anyone who hasn’t seen their child laying there connected to all of this, that is what they are fixated on.  The machines and the noises.  When we walk into the PICU for the first time after surgery, we see our baby.  We see our sweet little girl.  We see that she is alive.  We see her fighting.  We see our daughter, Ava Elaine Allen.  The surroundings disappear.   The machines and the noises and just there to make sure she is okay.  All we care about is our baby laying there, waking up.  It’s not scary, usually it’s blissful.  So the machines are loud and take up too much room, but there in the middle of everything is out PERFECT little girl.  And that, at that moment, is truly all that matters. ❤

3 comments February 9, 2011

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

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Life with a CHD

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