Surgery updates...

So, I will be updating this post as we go through today (as often as I can).  I know we have so many prayer warriors who will want to keep tabs on our little bug.  All updates will be within this one post... I'll just post a time and update below as I have updates to post.  Thank you so much for your thoughts and prayers.  We sure felt an amazing outpouring of love yesterday.  God bless you all!

5:10am:  Ellie was awake-ish and cuddling with me

In my Team Ellie Bug shirt giving her squishies and singing songs

So tired.

She's so chunky that when I moved her head, I made an extra roll of skin on her shoulder :)

Look at all that chunkiness on our sweet girl!

8:30am:  The anesthesia team came up to get ready to transport Ellie to the OR.  It took a little while because we had to wait for the blended air mobile and portable monitors to travel.  Ellie was in a good mood while we waited on the team, but as soon as she heard all the people gathering around her, she was really upset.  I don't know if she connects the bustling to an upcoming surgery or not.  But she wasn't excited, and that broke my heart.  

Daddy giving Ellie a pep talk.

They gave her some medicine to calm her down and we were on our way.  We boarded the elevator to head down to the 3rd floor (surgical floor).  As soon as the elevator doors opened, the hospital went dark.  YIKES!  Something (likely construction) caused the entire hospital to lose power.  Not what I wanted as we walked to the OR.  Fortunately, the backup generators kicked in right away and lit the hallways.  Double bonus:  the elevator doors were open.  If the power went out 5 seconds earlier, we would have been stuck in an elevator.  Whew!  Here are some pictures of our sweet bug during transport.  She went into the OR at 8:59am.

The anesthesia team getting Ellie comfortable before transport.  

You can barely see B and I.  I'm leaning over the head of her bed... 

B is standing talking to the anesthesiologist. 

Ellie looking pretty happy as we head to the elevators.

Just getting to the OR - Ellie still pretty alert.

We're hanging out in a private room off of the surgical waiting area... which is nice.  I'll keep updating as we hear back from the team.  At this point, they're still prepping Ellie.  We will hear back when the actually start surgery.  They need to start anesthesia first, then insert an IV and the two lines (arterial and central), they'll intubate her and block her trach opening, they'll scope her trachea and insert a probe to do an echocardiogram of her heart through her esophagus.  I'll update when I know more.

10:55am:  Actually surgery just started.  This should take about 3 hours before they start the recovery process.  Prayers, prayers!

1:11pm:  Dr. Morales just left.  He said that the banding went better than he anticipated.  BEST.  NEWS.  EVER.  Ellie was extraordinary in a great way today.  Before surgery, the pressure in her pulmonary arteries was really high (pressure and resistance are different).  With the band, the pressure was decreased to 1/3 of what it was previously.  He was hoping to to get that pressure down to 1/2 of what it was and is surprised that she responded so well.  High five, Ellie, for being extraordinary in the best possible way today!  From here she'll go to the CICU for recovery and we'll wait about 2 months for another heart cath to see how the pulmonary vascular resistance has changed with the trach and banding.  He doesn't anticipate that it'll be perfect then, but if her PVR has dropped, that'll be a a great sign that we're on our way to surgical repairs.  He also said that the echo they did today (through her esophagus) showed that the right ventricle is maybe a little larger than they thought from the sedated echo before Thanksgiving.  This is also great news.  Thank you for all of your prayers today - we got our miracle!!!  Still a long road to travel yet, but this is the best possible news we could have gotten today.

4:57pm:  Our sweet girl is resting in her CICU room.  She's hooked up to lots of stuff... but doing well.  She's nice and pink - not blue at all.  Below are a few images for ya.  I took some pictures of what she looks like, but I'm not really comfortable sharing them with the world.  I will, however, post a picture once she's awake and extubated in a few days.  Here is her room with all of the crazy busyness going on, a new chest x-ray showing her metal sutures (and a few other things), and her heart bead.  They do something called "Beads of Courage" here... a very cool program.  As Ellie goes through test and procedures, she "earns" beads.  Right now, she has a total of 142 glass beads.  We've only been collecting them during this hospital stay.  She gets beads for things like overnight stays, CICU admissions, surgeries, vent support, new lines placed, tests done, etc.  Today she earned her first heart surgery bead... a BIG deal!  Someday, when she's much older, I hope to take these beads and make them into jewelry for her.  Maybe she'll have a yellow necklace (inpatient stay beads) with a fish charm (for traveling more than 50 miles for treatment)... or a purple (for new medications) & aqua (tube placements) bracelet.  Might sound kind of lame... but I think they'll be badges of honor someday that she can wear with pride.  Love this little bug to the moon and back and couldn't be more thankful for the news post-op today.  PRAISE GOD!!

Ellie's CICU set up

Post-op chest x-ray from today

First bead of courage for heart surgery

This picture simplifies the heart band well.  Ellie's heart isn't divided into red/blue like this one is, but you can see the pulmonary arteries (blue) that branch off to the lungs and where the band is, anatomically.  Seems simple, huh?

... now we wait.  We wait a few months for Ellie's body to adjust to this mechanical restriction of blood flow and pray that the reduced pressure in her pulmonary arteries will reduce the pulmonary vascular resistance and open the door for the next surgeries.  Again - PRAISE GOD!!  And now... I'm completely spent emotionally and physically for today.  Lame for New Years Eve, right?

I can't end this post without giving a big shout out to all who have been keeping up with Ellie and sharing this blog.  I don't ever obsess about hits to the blog, but in the 24 hours after I published our last post, we had over 4,000 hits on the site.  To me, that's 4,000 prayers being lifted for our sweet girl.  Before, a high-volume day might have brought 500-600 hits... still amazing, but nothing compared to 4,000.  Again, I don't obsess about that at all... I'd still post if I was the only one reading, but it means the world to me that you are all in this journey with us... you're sharing our story and lifting up prayers for our baby.  I couldn't be more grateful.  I know for sure that you all had a part in the miracle performed on Ellie's arteries.  We love you so very much!