ECMO: Our defeated foe!

What a day.  It's true that miracles happen every day.  It's true that I went to bed last night and my heart beat probably somewhere in the neighborhood of 23,400 times while I slept.  I had nothing to do it.  It just beat.  The Lord did that.  And I woke up in the morning and my brain came back to consciousness, my bladder was full of the evidence of working kidneys, my eyes could see, my two legs supported my weight when I stood and I was breathing.  I was alive.

Louisa is alive today too.  And that's a miracle!  When we woke up this morning, her heart was beating, but pretty wimpy and not enough to sustain her life.  She was on this crazy ECMO machine.  This machine is an amazing gift of grace from the Lord and has helped many little guys and gals like Louisa have a 3rd chance at life (I'm counting her Norwood operation last Thursday as her 2nd chance).  At 9:51 AM, they clamped off the ECMO machine and her heart began to take over.  And it took over!  It was beating with enough force to sustain her life.  They like to give it a 4-hour trial and make sure the heart is really ready before they actually take the cannulas out of the heart.  If things go badly, they'll just take the clamps off and wait another day or two.  But Louisa looked strong out of the gate and by hour 2, was looking fantastic.  We were ecstatic!  Dr. Z reminded me that we need to be patient, some kids will poop out between the 3 and 4-hour mark.  But, we had people praying from all over the world, literally, and things were looking amazing.  It was lunch time, so we decided we'd step away for a bit to eat and stop "watching the pot" to see if it would boil.  We were just about to hit the 3-hour mark when my blasted phone rang with that U of M number.  My heart rate doubled instantly and I answered.  It was our nurse.  "They just found a blood clot on the arterial side of the ECMO circuit" (this is the side that is bringing blood to Louisa's body).  The circuit is no longer safe to use (you can't put a blood clot into Louisa) and they are going ahead with the surgery to take the cannulas out of Louisa's heart, an hour early (the hour that some kids tire out in the trial).  "But she looks strong."

We rushed to the waiting room to wait for news.  No need for lunch now, my stomach is in my mouth at this point.  I feel like I can't breath and am wondering if I need to run in there and ask to be put on ECMO myself!  And we waited.  About an hour and 15 minutes that felt like an eternity.  Finally, Dr. Z comes in.  His face is lit up.  This is the face you want to see.  It's not the face from Friday that was all contorted with pity, sadness, and hopelessness.  "She's off ECMO and she looks great!"  That was the gist of what he said, though your brain goes into a weird fuzzy state when finally getting news you've been waiting for.  Your memories are distorted -- like trying to remember your wedding day.  And then he proceeded to talk about the next few days and what to expect.  There are quite a few hurdles to go over and likely some smaller set-backs, but if your kid can get off ECMO after cardiac arrest, she must be a tough kid.  We had to discuss what will happen if she arrests again.  Going on ECMO again is likely not an option.  But then he started talking about closing her chest in a few days, and getting off the vent, and weaning off the blood pressure support, and then he said the most amazing words I've heard since coming here a week ago today for her delivery.  He said we'll start getting her ready to go HOME.  I interrupted him and said, "Did you really just say that word?  Home?"  He said, "Yeah!  There's a lot to do to get there, but yes, home."  (something like that -- again, fog in brain).

We had to wait another 45 minutes or so for them to finish up the surgical aspect of the process and then we got to see her.  What a beautiful site.  They had her on the blue warming blanket.  No ECMO machine.  No trace of it anywhere.  Gone.  And that little body looking more full of life than I'd seen since she was born.  Chest still open and you can literally see her heart pounding away through the dressing.  What strength!  Who does that?  What makes this happen?  It was the Lord's decision.  Just as He decides that my heart will take another beat, He said the word, "beat".  And her heart beat.  And He's said "beat" at least 105,300 times since they placed the clamps on that ECMO circuit and Louisa's heart must obey.  It obeys because its Maker spoke.  It has no other option.  Sure the epi and dopamine are helping and the external pacer can help, but last Friday, the Lord said STOP BEATING and the heart obeyed.  Why?  I'm not exactly sure, but I do know that I saw a miracle over the last 4 days.  Our families came to our aid.  Our church collectively got on their knees and pleaded for Louisa, we had countless texts, emails, and facebook messages saying folks were praying, their kids were praying, their church was praying, there were even strangers saying they were praying for Louisa.  I figure a big reason He stopped her heart was that so you all would pray that He'd start it again, and then stand in awe of Him and give him praise upon praise for His greatness when today, He said "BEAT" and it did just that.  He will take pleasure in your praise and He should because He deserves it.  It and so much more.

Thank you for praying for Louisa.  Please take a moment to praise God for our little miracle.  It will give Him such pleasure to hear that praise.  Continue to pray for her.  Bumps ahead undoubtedly, but to be back on course this evening is nearly incomprehensible.  To God be the glory, great things He has done.

And by the way, today was my birthday, 36 years old.  This was the best birthday of my life (so far).

BEFORE

AFTER

Way to go Louisa!  Don't give up now!

A new club to join.  Dues already paid.