THE big day

I'll continue to update this throughout the day as we get updates from the OR...

8:45am:  they just wheeled Ellie back to the OR.  They did her final scrub down at 6am and we haven't been allowed to hold her since.  I hope it's okay that we showered her with kisses and tears before they came in.

She had a pretty rough night last night... I'd rather not tell that story now.  Ellie was a very happy little girl this morning and was loving her snuggles.  Here are just a few shots of us sending her off.

Cuddles w/ Daddy

Precious smiles for Mommy

"Shut it, Daddy" (jk, she's enjoying hand kisses)

Sending her to the OR... ugh... never gets easier

10:15am:  They have finished the rigid bronchoscopy and they've set all the lines and IVs and done the anesthesia deal... and they've just made their first incision.  We should hear another update around 11:45am.  On a side note, we just met an old friend in the lobby who lives in the Boston area and stopped in for a chance (you know I don't believe in chance/coincidence) encounter with our family.  What a sweet man!  I'm endlessly amazed by the love that is pouring out for our baby girl from all over.  Thank you for your prayers.  We'll keep you posted.

11:47am:  Just got the update that she is now on the hat (heart in Boston talk) bypass machine.  Now the dirty work begins.  She was able to go on bypass without any issues, though - that's a big step in the right direction!  The actual heart repair and artery repair can happen now.

1:10pm:  Another update... no real "meat" to this one.  Everything is going "so far so good".  No surprises... always a good thing.  Our next update will come at 2:45pm.  Thank you for your continued prayers!

2:42pm:  Ahhhhh... she is back off of the bypass machine and the surgical part is done.  She did well.  They're closing her up now.  Praise Jesus!!  We will post again after we talk with her surgeon.

3:30pm:  Just talked to Dr. Baird.  How do you thank someone for fixing your child's heart?  How do you thank him for giving her the opportunity to have a life that you didn't think would be possible for so many months?  Ugh - the weight on my shoulders is lifted.  They were able to do a full 2-ventricle repair on our sweet girl... the best possible option!  They removed the portion of the pulmonary artery that contained the band, too.  Ellie has a beating, normal functioning heart right now!  I can't believe it!  Her rhythm isn't quite back to normal... which is pretty common post-op... they hope that they can get it back on track in the next few days.  The scope showed NO tracheomalacia or bronchomalacia (2 of the reasons she was originally trached and vented)... her larynx (voice box) looks good, too.  There is some subglottic stenosis (a narrowing between her voice box and her trach stoma).  This can possibly be resolved with some dilation (which is a quick OR procedure).  If so - Ellie may not need a trach and ventilator for much longer.  This is absolutely amazing.  Oh, we are so proud of our Ellie Bug and we're endlessly grateful for all of the thoughts and prayers that have carried her (and us) through this journey so far.  God is surely good!  Ellie will be heavily sedated for a few days yet... but before long, we'll have our sweet girl back better than ever.  Thank you, thank you, thank you!  We love you dearly!

8:10pm:  We were finally able to see Ellie around 5:45pm.  She looks amazing!  She really does.  I know these pictures may be hard to look at for some, but this is the best that Ellie has looked post-op.  She's pink... PINK!  This is a huge celebration.  Her lips are this glorious bubble gum pink color.  They've never been that color.  Her mouth has always had a blue/purple tinge to it... never bubble gum pink.  Her tongue is even pink.  Small celebration?  Not for a little girl who fought to have pretty saturation levels every day.  She has a lot of accessories right now (2 chest tubes, a foley catheter, 4 arterial/central lines, a peripheral IV, a tube into her stomach to vent it, intubation for her airway, her usual pulse ox monitor, leads to her heart monitors, a monitor on her forehead measuring oxygen saturation to her brain, plus electrodes into each side of her heart keeping it in rhythm)... but those accessories will slowly disappear and soon we'll get to see our sweet bug without all the tubes and wires.  She is beautiful and wonderful and quite the warrior!  She'll be pretty heavily sedated for a while.  They may start to let her wake up tomorrow if she seems to tolerate it well.  I can't wait to post pictures of what she looks like just a few days from now.  Thank you for your thoughts, prayers, support and well wishes.  We would not have been able to afford to make this trip without the support we've received for Team Ellie Bug.  You each have made such an impact on our journey.  Thank you - from the very bottom of our hearts.  I know Ellie is grateful from the bottom of her (newly whole) heart.  Praise God.

... Now to finally get some rest!

Our beautiful Ellie bug - we were finally able to see her post-op.

Pink lips... I can't believe she has pink lips!

And she hasn't had a breathing pattern this smooth since she was a week old.

That white number on the bottom that reads 100%?  Yep - that's her oxygen saturation!  I was so excited that I had to take a picture of this, too.  Our little girl has a whole new heart today.  The surgeon had to take parts out and completely reconstruct her septum and valves and repaired her pulmonary artery.  But finally, her heart is not much different from yours or mine.