Thursday, February 4, 2016

Day 4 - Emily Tucker

          On December 5, 2013 my husband and I decided to jump into the world of adoption, fulfilling a dream I had since childhood.  That same night, within the hour, I found our daughter.  Her waiting child picture was the most adorable little baby with tiny pig tails, her video was of a toddler with the deepest eyes right into her soul.  Emily was diagnosed with repaired Tetralogy of Fallot (TOF).  I was fairly familiar with CHD as my 19 year old sister from China has a single ventricle heart and received the Fontan surgery upon adoption.  She was doing so well and was ultimately the one that led us to our own daughter with CHD.  Upon receiving Emily’s file and discussing with our cardiologist, we felt like her file left more answers than questions.  Her paperwork listed conflicting diagnoses, her surgery listed was not matching the repair that should have been done.   God blessed us with a peace that surpasses all understanding and we jumped right into to the mounds of paperwork to bring her home! 

          11 months later we were in China meeting our Emily, after an hour of hesitation she latched on and never looked back.   Our time in China was picture perfect, Emily transitioned seamlessly.  I often tell people that while our medical journey has had many ups and downs, our journey of attachment couldn’t have gone better.  She was our missing puzzle piece.

          Bringing Emily home was the easy part, figuring Emily out medically was the hard part.  It took us 11 months to bring Emily home and it took doctors 11 months to figure Emily out.  Her original diagnosis of repaired TOF was incorrect, as suspected.   After having an ECHO performed Emily actually was found to have DORV, which can present similarly.  Emily also has situs inversus totalis, where all of her organs are reversed or mirrored from their normal position.  So her heart is on the right instead of the left, her left lung is actually on the right, her stomach which should be on the upper left is on the right, and on and on.  In China at 9 months old, Emily received her glenn shunt, which was to be followed by the Fontan later.

          A heart cath was scheduled to check her pressures and get a clearer picture of her heart prior to scheduling the Fontan.   You know it is never a good sign when you are asked to go into a private room to talk.  During the cath it was revealed that the pulmonary arteries to Emily’s right lung didn’t develop properly and therefor her right lung was hardly working.  Where her left lung was covered in beautiful branches her right lung was bare.  The doctor explained that it is a properly formed lung, a beautiful lung, but unfortunately it is not performing any of the jobs of a lung.  This is a problem, but an even bigger problem when your child is supposed to receive a Fontan operation.  There was a small glimmer of hope when they mentioned that a bi-ventricular repair may be an option, her only option.  This was never on our radar, so while the news of her lung was and is devastating, we were filled with hope.   Our home hospital passed our information on to Boston to see if they would be willing to perform her surgery.  We once again prayed for peace in the unknown.

          On October 16, 2015 Emily received a full bi-ventricular repair at Boston Children’s Hospital, she now has a 2 ventricle heart and a cadaver coronary artery.  Her oxygen jumped from 79-98 and after battling a collapsed lung Emily was discharged exactly 2 weeks after surgery. On October 30, 2014 we left for China to pick up a little girl with a broken heart and on October 30, 2015 we arrived home to Virginia with a little girl with a normal functioning heart.  It truly was a full circle experience. 

            3 months later Emily is running all over, eating like crazy (hoping to finally make it to 30 pounds), anxiously awaiting her 4th birthday, riding her bike with ease, and has no limitations.  She is spunky, loud, opinionated, and dramatic.  She’s our little warrior; our hero.  She proudly shows off her zipper and is adored by her siblings.  Looking ahead our journey is long and we are still left with many unanswered questions.  In May we will travel back to Boston to meet with our cardiology and pulmonology team.  We will go over Emily’s genetic testing and perform a follow-up cath to check her heart, but honestly the main goal is to see if there are any interventions that can be performed on her lung to increase blood flow.  Currently Emily is at 18% blood flow to the right lung, which is not enough to sustain it.  We pray the future holds the possibility of interventions, but it may also hold the possibility of removing part or all of her right lung.   Just like when we were uncertain of what was to come with Emily’s heart, we are at complete peace as to what is to come with Emily’s lung.  One thing is for sure, we know Emily will accept the challenge with grace and a fighting spirit just like she did with her heart.  Looking back, I’m glad that we went into this with blinders on and the label of repaired TOF, I fear that if we had seen her long list of complexities and known what a life long journey lay ahead, we would have missed out on our greatest blessing.  Is it scary at times? Absolutely.  Is she worth it? A million times yes!

This is my story, this is my song. Praising my savior all the day long”

2 comments: said...

Wonderful, wonderful story! And YES - praising our savior ALL day long!

Andrea O. said...

Such a cutie! I loved reading her story!

Post a Comment