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.|
|It's always so hard to hand her over.|
|Our friend Donna came to visit.|
|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.
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!|
|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!|
|Wagon ride to the dock.|
|Fishing once the sun went down.|
|She caught the biggest fish!|
|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).
|Leaving the hospital without a trach! Woohoo!|
|Visiting family in Pittsburgh!|
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!