Tornadoes and hemi-Fontans

Those surgery days are rough.

Louisa did well.  We are hitting our 24 hour mark as I type this and so far, so good.

The surgery itself actually went better than expected.  If you remember, she had 2 narrowed areas in the aorta.  The more distal one (farthest from the heart) was ballooned in the cath lab and the question was going to be whether the balloon opened it enough.  They wouldn't know until the more proximal narrowing could be fixed with surgery.  If it wasn't enough, we were looking at another surgery or at the very least, another heart cath.  So, you can imagine how excited we were when Dr. Ohye floated through the waiting room (we call him the "phantom surgeon" because he seems to appear and disappear like a vapor around the hospital) after surgery and let us know he was actually able to reach BOTH narrowings and repair them both!  He then was able to do the hemi-Fontan.  He was pleased with the overall result.

Her initial recovery was uneventful, but she began to struggle with some episodes of oxygen desaturation.  They were able to determine that she had some pockets of fluid collecting in the pleural cavities (the spaces the lungs sit in) and they had to place 2 more chest tubes (she has 3 now) to drain those.  She seemed to be pretty happy after those were placed and now her levels are a bit better.  They also decided to get an ECHO and it showed a "pop-off vein" (a collateral) that connects deoxygenated blood with the pulmonary veins that are bringing fully oxygenated blood back from the lungs to the heart.  This is also leading to low sats.  The issue is whether the pressures in the chest improve enough over the next 24 hours for this vein to stop dumping so much deoxygenated blood, or whether it persists and they'll have to take her to the cath lab yet again to stick a coil in that vein and shut it down.  We'll be able to tell if we can get her extubated and watch her oxygen levels and blood gases.  If they hold steady, we'll wait.  If they drop, then a trip to the cath lab.

So that's the update.  Still waiting.  It feels different though.  For the Norwood (the first surgery) at this post-op hour, we were essentially at our lowest point in this journey.  There are a lot of memories about that day today.  We're staying at the Ronald McDonald House in the hospital again and today we were having lunch there.  I looked over at the living room set up and it was like a movie playing.  I could see myself sitting on that couch and I could see Dr. Z sitting in that chair with the ECMO papers in his hand.  "Louisa is very sick.  Some parents would decide not to do this and let their child go.  You don't have to do this, but I need to know very quickly if you want us to stop because they've already started."  It still gives me chills.  We signed the papers and they kept going and Louisa fought back.  Praise God I signed those papers.

Right now, I'm looking across the bay at the spot we were in.  There's some young parents there with a newborn.  I see the dad wheeling the mom around in a wheelchair just like I did.  Thank goodness there's no ECMO machine, but I can see it like it's still there.  This place is so crazy.  I'm not into ghosts, but this place seems to mix memories and reality way too close.  I have to shake my head sometimes to remind myself that I'm on the other side of the bay now.  It's not me over there.  That's not my baby.  It's a memory, a haunting one, but a memory none the less.  The reality is much closer, it's in the foreground, right in front of me.  It's Louisa.  

I'm looking at her now.  She's still on the vent, but she's "sprinting" right now.  That's what they call it when they turn the vent settings down to the bare minimum and see how they will run "on their own".  She already passed one sprint this afternoon and if she passes this one, they'll extubate her tonight.  It took us 2 weeks to get to this point last time.  This time, we're looking at about 30-32 hours.  She's bigger, she's stronger, she's done with the shunt physiology.  She's a hemi baby now.  She made it.  Today, we're hearing things like, "She looks great!"  "I like her numbers."  "Look how big she is!"  "Her gasses look great!"  "These are little bumps and all expected things."  "We can fix that if we need to."  I like it.

And just in case we weren't sure who was in charge of all this... we had a tornado in the area on surgery day!  That was fantastic.  They pulled the blinds and covered our baby's head with a blanket in case of flying glass.  We were laughing, laughing at a tornado.  Why laugh at a tornado?  Because a tornado would be like a gentle breeze in my life compared to the tempest named Louisa.  Because I've seen my baby tip-toe all over death and it would be hilarious if in God's great providence, he took my baby via a tornado on her hemi-Fontan day on the 10th floor of Mott!  Because it's funny how helpless we all are.  Tornadoes, like congenital heart defects, remind you that you are NOT in control.  Never.  Not ever.  As short as our lives are, we're all tip-toeing daily around death.  If you're reading this, it's because the Lord has been gracious to you.  You should laugh at the tornadoes in your life.  The Lord's got it.  If He can get Louisa through the Norwood, and the hemi-Fontan with aortic arch reconstruction, AND a tornado, He can surely take care of all of us too.  

Some surgery day pics:

Here's crazy Lou in the holding area prior to surgery.  Silly little happy girl, had no idea they were about to crack her chest open.  Forgive us Lou.  We love you and hate that we have to do this to you.  But we signed those ECMO forms when they gave us the option and decided we won't ever give up on you.  Thanks for not giving up on us.

A little graphic, but here's the reality of it all.  She looks bigger right now because of the extra fluid, and prior to the other 2 chest tubes.

The pumps are back, but not nearly as many as before.

Still my beautiful little baby.  Hang in there Lou.  The tornado passed.  The night has come and gone.  A new day is dawning.  My little hemi.