Friday, July 10, 2015

Sleep Study Results!

Well, not totally true.  I don't have all the results.  But, I know the most important part.  This is what her ENT said in an email to me:

"Indeed it looked very good.  She did not have any observable sleep apnea!"

Hallelujah!!!

Almost makes me remember the night of pure torture, fondly.  Well, it was certainly worth it, that's for sure!!!

So, where does that leave us?

He said, "What we should do is schedule a direct laryngoscopy under anesthesia, to make sure there are no surprises.  Then we admit her to the PICU for decannulation and observation."

I'm sorry, did he say decannulation?!

HOLY COW!!!

Of course, we had to wait another two full days till we heard from them with a date for this laryngoscopy.  Seriously, I am going to run out of patience one day... even I don't know how I live like this!

So, I was sitting in Midas on Wednesday, getting the tires rotated and oil changed in my car, when I got a text from Brandy, "His office called with possible dates.  Call me!!"

I got their number from Brandy and called his office back immediately.  She gave me three dates, and I took the first available, Tuesday, August 11, 2015.

After going over everything, she confirmed by saying, "So, Harlie is scheduled for a direct laryngoscopy and decannulation with an admittance to the PICU on Tuesday, August 11th.  A nurse will call you on the Friday before to give you more information."

I could barely say, thank you and good-bye before I was full-on crying tears of joy!  And I'm not even embarrassed.  I think the guy sitting next to me was a little worried.  But, I didn't care!

After all we've put her through!!  After almost NINE years of breathing through a tube!!  We are scheduled for DECANNULATION!!!

I just can't believe it.

So, we have one more hurdle to clear - the laryngoscopy.  As long as there are "no surprises", we'll be home free.

I'm choosing to think positively.  I'm going to enjoy the fact that we are HERE.  So, so close.  Closer than we've ever been.  And considering the report showed NO observable sleep apnea, I'm thinking that's a really good sign.  The only thing that nags me is that one day, a while ago, her ENT said that she had large tonsils and adenoids, and that they may/may not have to come out.  I'm guessing that since she slept okay, maybe that's not an issue.  I guess we'll see.

More waiting... but we are oh-so-close.  And that's so freaking exciting!!!

From a critical airway to possible decannulation in just under nine years.  With over 45 surgeries in between.  I don't know how we've all survived.  I really don't.

Our sweet, sweet girl.


Her airway was so critical, that she could barely be moved for the first three weeks of her life.  No holding her, no cuddling, no comforting her.  Even before and after her first heart surgery, she just had to lay there.

So, I sat there, next to her, as much as I could.  I would touch her toes and stare at her.  And wonder what the hell was happening.  Still wonder that, sometimes.  ;-)



Three days old, the day before her 1st heart surgery.


This just proves how tough you can be, when you need to.  We've really put her through a living hell, and you know what?  She's still a very happy little girl, who still loves us very much.  Kids are stronger and so much more capable than people realize.

Thank God for that.  

And thank YOU for being there for us.  

One more month.... I. can't. believe. it.  

Much love,
Christy xo



Wednesday, July 1, 2015

Family Vacation at Lake Gaston

So much to update!

First, I can't believe that it's now been over SIX weeks since Harlie's sleep study and still no word!!  They said it would take between four to six weeks to get the report done.  Harlie's ENT asked for the report to be expedited.  Six weeks later, we are still waiting.

This report is potentially life changing.  We hope it's going to be life changing.  And we are still waiting.  Waited more than two months to get the appointment.  Waited over eight years to get to the point that we had the opportunity to wait for this report.  Crazy.  I just want to know!!!

Other than that, things are good.

We went on vacation a couple of weeks ago to Lake Gaston in North Carolina.  It was our first time there.  We normally go to Lake Anna. But our family has grown to 20 people, so we couldn't find a house large enough to accommodate us there.  Luckily we found a house at Lake Gaston, which is a larger lake, and is only an extra hour away.

This year, our family graduated to having to take two cars.  That was after packing "light."  But, with it only being two hours away, it wasn't a big deal to drive both cars.

Harlie did great.  And we couldn't help but enjoy how vastly different an experience it was versus last year's vacation.  Last year, she was on oxygen the entire time and had NO energy whatsoever.  She spent about two hours at the dock the entire week.  And to get her to the dock, she rode in a wagon since the walk was way too much for her.

But, this year, she could walk all by herself.  AND, she mastered getting in her float and in and out of the water ALL BY HERSELF!  No oxygen tubing, and she had plenty of energy to enjoy herself.  And, as if that wasn't enough - everyone got to hear her talk and could understand so much of what she was saying.  WOW!

A different vacation, indeed!  I can't believe how great she is doing.  Life is SO much better now and it's hard to believe we lived as long as we did in a whole different place.  We are so grateful!

Here are a few pics from the week:

Our family.
The dock.  And yes, I let my boys jump from the top.
All three of them.


One day, we were hanging out on the top deck and I got up to go check on Harlie (who was in the house).  When I came down the stairs, I looked in the water, and there was Harlie, floating in her tube, all by herself!!! She said, "Hi Mama!"  Oh my gosh!  I can't tell you how many heart attacks that girl has given me these last eight years!  Thank God she could get in and out of the water safely!

Our view to the left of the dock.

Our view to the right of the dock.

My view on the boat ride.
Happy guys on a boat.

REALLY happy guy driving the boat.


Tom letting Murphy drive.

And Harlie.

And Cooper.  This is the life. 


Me and my sister, Sandy.

Two happy kids.

Three happy kids. 

Harlie loves the pontoon boat.

Murphy and Charlie in a Harry Potter trivia contest.
Murphy won.

I sure do love this guy.

Me and Maggie.

Me, Kelly, Jordan and Maggie.

Harlie loves her cousin, Chase.
If he was awake, she was right with him.

Feeding the fish at the marina.



How Harlie floats.
This is when it pays to be tiny.  She still fits in an infant float!

Harlie's happy place.  This girl loves to fish.
Here are some videos:

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Tom instigated a cooler water fight between Cutter and Charlie.  It was entertaining for all of us. Cutter is my sister's youngest and Charlie is my older brother's youngest.  They are hysterical anyway. 

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I should have gotten some pics of my nephews.  But, I really didn't have my phone around much.  We had spotty cell service, at best.  So, I really unplugged for the week. It was so great, that I'm having a very hard time plugging back in!

Okay, well that's it for now.  I've been working on this post for weeks!  But, now with summer swim team in full force, I have even less time to sit in front of the computer.

Much love,
Christy xo