Friday, August 26, 2016

Summer Reflection

This summer has been interesting.  Without a doubt, it has been the most "relaxed" of the last 10 summers we've lived.

You know that "On this day" thing on Facebook where you get to see what you posted on that day from years past?  Well, this summer has been a constant flashback of surgery after surgery.  I feel like each day I've relived it a little.  One day it was a post about coming home from Boston.  The very next day was us heading to Boston again!  Geez, no rest? A post about sending the boys to their grandmas, and how I missed them already.  Posts providing updates throughout surgery, she's in the OR, she's on bypass, she's off bypass, she's out, she's sicker, she's better, etc., etc.  How did we live like that?  No, seriously, how in the world did we do it?  This made me think about it.  So, here is a summary of the last 10 summers of our lives (all her other surgeries at other times of the years are NOT included):

2006:  I was pregnant with her.  In June, we learned that she had major heart defects, along with her major lung defects.  We were asked more times than I can remember if we wanted to terminate the pregnancy. The rest of the summer I had weekly appointments with several doctors to make sure she was still alive and that I wasn't in danger.  We were advised to make all decisions just in case she didn't make it.  And we were told to leave Richmond if we wanted to give her the best chance of survival.

2007:  My adorable, tiny, little baby girl, who already had six surgeries (two of them open heart) was working way too hard to breathe.  After two months in the hospital (March - May), followed by many trips to the ER, she limped into August, when she had most of her right lung removed.  That was a life-saving surgery.  Her life was immediately, immensely better -  thank God and her wonderful doctors.

Due to a post-surgical complication, that summer also included a 911 call from my house (something you never want to do) and a helicopter transfer from our local hospital to Children's National in DC.  That was so crazy that I didn't get any pictures of that experience.

2008:  She had her first jaw reconstruction and craniotomy in Norfolk, VA.  I was also pregnant with Cooper at the time.  I'm pretty sure every nurse and doctor thought we were crazy for having another baby.  But, hope is a funny thing.  She spent the summer with her jaw wired shut.  Turns out the surgery wasn't successful.  She fell in the bathtub and hit her chin on the edge of the tub.  I think that negatively affected the reconstruction, but I don't think it changed the final end result.

One of my all time favorite anesthesiologists.
He was so great that he came to check on her throughout her stay. 

She always finds her smile again.
2009:  She had her third open heart surgery.  This one was particularly rough emotionally.  Her surgeon's original plan was to do two procedures (the DKS and the Fontan) at the same time.  But, after having a conference with many other surgeons, he changed his mind and decided to do just the DKS.  This was disappointing because we wanted to avoid her having to have a fourth open heart surgery.  He came out of the surgery and said that her heart has "the world's worst scarring" and he wouldn't have had the option to do the second procedure anyway because getting through that scar tissue was so time consuming.  And you can only be on the heart bypass machine for so long.

It's always so hard to hand her over.  

Our friend Donna came to visit.
Smiling again!
2010:  She had her fourth open heart surgery, the Fontan.  Nothing really stands out, other than that she is a champ.  Oh, and I spent the summer training for the Richmond marathon.

Waiting to go back.  Worry distraction play time.

It only took 20 minutes and a whole lot of work
to get her up in my lap.  
2011:  She had spinal fusion surgery at the end of March and was in a body cast for weeks and weeks.  Her bone graft in her spine became infected and she had to have additional surgeries complete with a wound vac in May.  That summer she spent recovering.  Looking back, it was probably the most difficult recovery of all her surgeries.

2012:  She had two surgeries that summer.  She had her first BAHA surgery.  And then we headed up to Boston for her fibula free flap mandibular reconstruction (which was her third jaw reconstruction).  What made this one so different was that they took her fibula from her leg and implanted it into her jaw.  At the time her jaw was disconnected on her right side and was only held together by scar tissue around it.  They connected blood vessels to give the bone life and we waited to see if it "took."

The boys being supportive.

Not again!  Harlie hiding from the docs before being
taken back for jaw surgery.

Back home and smiling again!
2013:  In July, we returned to Boston for her jaw distraction surgery.  Once the bone took and healed properly, they were able to distract it.  They essentially broke her jaw, put pins and rods on both sides of the break and we turned the screws each day.  Each day, with the turns, her jaw would break again and new bone would grow, making her jaw "longer."  We turned those screws three painful times a day for twenty-some days.  At the end of August, her incision became infected which required four debridements and another week in the hospital.

The amazing docs in Boston -
Dr. Brain Labow and Dr. Bonnie Padwa.

It's a tough job being her dad sometimes,
but he always rises to the challenge.
They were teaching us how to turn the screws.

Recovery miraculously goes faster when you have your family
surrounding you.  This is when our friends surprised us
by flying Tom and the boys up to Boston to visit us. 

2014:  Her lungs were bad this summer.  She had a CT scan that revealed that she had inadequate alveoli.  She was on oxygen 24/7.  And it was mentioned that she will need a heart and lung transplant at some point in her future.  Although, you never know what the future holds.  Because she's doing so great now, that that's hard to believe.

Oxygen at the pool?  No problem!
 We went on vacation that year and she couldn't spend much time outside.  And she couldn't walk from the house to the dock.  That's okay.  We're problem solvers.

Wagon ride to the dock.

Fishing once the sun went down.

She caught the biggest fish!
2015:  She had a sleep study and we anxiously waited for the results for weeks and weeks and weeks!  And, finally, on August 11th after almost nine years with a trach, she was decannulated!  Woohoo!!!

So excited!

Dr. Preciado - the doctor who saved her life
at the very beginning.  He got her breathing tube in
right after she was born (which was a challenge).

All done!

Leaving the hospital without a trach!  Woohoo!

Visiting family in Pittsburgh!
2016:  I can state with confidence, that this has been the best, and her most healthy summer of our lives since 2006.  I definitely feel like the last ten years have been traumatic.  Thankfully, they've also been full of great stuff, too.

Just look at her! Can you believe all she's been through? There are not enough words to express my gratitude for all that's good now.  Harlie is a very happy girl - there is no doubting that.  And, if all goes well, she will start school on the first day of school, like most kids.  The only other time she was able to go to school on the first day was in the fall of 2011.  Isn't that crazy?!  So, keep your fingers crossed that nothing messes her up this year!  This is shaping up to be a great year and I'm excited for all she will get to experience.

So, thank you again, to everyone who has ever had a thought or prayer for her and us over the last 10 summers (and years, but I'm focusing on the summers here).  Almost every day of this summer I saw old posts on Facebook from loved ones sporting their We Heart Harlie tees, or writing it in the sand, chalk, paint, etc.  So many expressions of love and support!  I hope you know that I am honest and sincere when I say we couldn't have survived it without you.

Love you all!
Christy xo


Anonymous said...

Harlie you look beautiful. You look bright, happy and I love your smile.
I'm glad you've sailed through this summer. God bless and good luck starting school

Susan said...

It's really quite something to see it written out like that. Hugs. It's amazing how your family has come through with such grace. Love to you all.