So Long Vader

I was dreading today.  I will probably dread every cardiology appointment.  But, I dreaded needlessly.
Today's appointment went wonderful!  I'll start with the worst part of it.  For those of you who don't know, there's an experimental procedure being done at Boston called the biventricular repair.  Basically, they direct blood through the left ventricle in hopes it will grow and become a four chambered heart once again.  Sounds pretty awesome huh.  Once we heard about this we started looking into it a bit because obviously we want to give little Liv the best chance at a long and normal life.  The more we looked into it, the more stressed we were getting.  They only do this procedure in Boston which meant LOTS of money that we just don't have would be needed.  Then there's the bit where it's extremely invasive and we'd have a lengthy stay in Boston.  Then, the surgery would have been this year.  Oh, and this would've made buying a house almost impossible.  Also, candidates for this surgery are more mild cases of HLHS with open mitral and aortic valves.  Liv's mitral is hypoplastic so we were thinking she wouldn't qualify but were planning on getting a second opinion anyway.  So, today, I talked to Dr. McCandless about it to see what she thought our possibilities were.  She said it was a definite no for Liv, though she was extremely supportive of our getting a second opinion to ease our minds.  She explained that Liv's aortic and mitral valves are atretic and her left ventricle is just a teeny tiny sliver.  So that was the worst news we got today.  And to be completely honest, I am so relieved!  Andrew and I were already under the impression that she wouldn't be a candidate so today, it was just confirmed.  We could still send in her records for that second opinion but I don't know if we will.  We trust Dr. McCandless completely and we both feel at peace with the plan we have.
Now for the good stuff.  I asked Dr. M to rate Liv on a scale of 1-10.  1 being as good as possible and 10 being in need of transplant.  She rated Liv at a 2 or 3.  The only thing holding her back from being a one is the scar tissue on her right ventricle from where the sano was connected.  This just means the squeeze isn't perfect.  But pretty darn close.
We talked about a bunch of stuff including her purple tongue being normal, her size being amazing, her being the happiest baby, her kicking the lasix, and the oxygen.  Wait what!?  Yes.  That's right!  Vader is being evicted!!!  Olivia is post op enough and high satting enough to kick that concentrator to the curb!  No more night time battles of putting it on.  No more stickers.  No more tubes.  And yes, this means the feeding tube should be gone for good too.  Dr. M was ok with it so it's all up to the pediatrician.  So maybe I shouldn't say it's gone for good.  But I'm going to so those good happy vibes make it out into the universe and maybe it will come true.
I LOVE Dr. McCandless.  She sat with us for quite a while answering all my questions and giving me little pep talks about a bunch of different aspects of this journey.  She couldn't believe how happy Olivia was and was just smitten.  When we were finally done, we headed out into the hall to get going and bumped into Kim (the fetal heart coordinator.)  So I chatted with her for a while.  And once again, she couldn't believe how happy and big Liv was.  Then Pat (the social worker) showed up and had to chat for a bit.  And once again!  Happy and big!  Liv was the center of attention.  Then Pat and Kim had to introduce Liv to one of the other cardiologists because HLHS babies just don't usually get that big and they had to show her off.
I really hate PCMC.  Don't get me wrong.  Everyone there saved my baby's life.  It's more of a PTSD thing.  But, however much I hate the place, I absolutely love (most) the people.
To wind things up, Liv doesn't have another appointment for 4-6 months where they'll do a sedated echo.  Without the feeding tube this means we won't have to go down to Salt Lake for 4-6 months!  It feels good to live a "normal" life.