My Warrior

February 11, 2015 Amy, heart defect, Tetralogy of Fallot, tracheoesophagel fistula 0 Comments

“She is a fighter. It’s what kept her alive. We love it when our heart babies are fighters. Her body has adapted wonderfully for as long as she has lived without this surgery.” ~ Pediatric Cardiologist


amy


I knew Grace was a warrior before we even laid eyes on each other in person. I knew enough of her story to know that she was determined, and although weak in body – strong in spirit. She was just a newborn when her first hospital stay began; tiny lungs fluid filled because her esophagus and trachea were connected. The surgery to repair that happened at just three weeks old. I’m told the incision location makes for an especially uncomfortable recovery. After weeks in the hospital she was released to the orphanage and then to foster care because of her heart. While in the hospital for her TEF (tracheo-esophageal fistula) repair she was diagnosed with TOF (Tetralogy of Fallot). She would need heart surgery.

Around 3 months old she entered the orphanage once she had fully recovered. Soon she was moved to a foster home situation because of her condition. At 7 months she left the foster home situation she had lived in for 4 months. She left her caregivers, the familiar surroundings and moved clear across China to a new foster home. I’m told it was a difficult transition for her. Even at 7 months old you know who your people are and you know when they’re not answering your cry. A day after arriving at New Day Foster Home she was hospitalized again with pneumonia. Once recovered she began what would be her final 11 months as an orphan. In July she was chosen to receive donated funds for her surgery from the sales of the “So Loved” t-shirt from the Ni Hao Y’all blog, and that’s where I first fell in love with her.

Their goal was to schedule her heart surgery as soon as she was well enough – but she never was while in China. Pneumonia plagued her but it didn’t keep her down. She always bounced back.

Through no effort of my own, we were matched 5 months later in what will probably be the closest thing to winning the lottery we will experience. When we got her referral I already knew a bit of her back story because I checked in on the New Day sit frequently to see if she was still there so that once we were logged in I could beg for her file inquire about her file. We weren’t even logged in yet! Our dossier was in transit but was probably in a pile of unopened mail on a desk or truck somewhere in China. Our dossier didn’t need to be logged in for her because Grace was a special focus referral and we did not hesitate to accept.

As we read about her and caught up with her story thus far and compared what we received in her medical report with assessments from specialists here we prepared as best we could to be her family and to care for her. She almost had her chance for heart surgery in Beijing a month before we traveled but after a week in the hospital being examined thoroughly the doctors felt it wasn’t safe to operate because of pulmonary complications. We requested that the remaining steps required for the adoption be expedited in light of her condition and it was granted. We traveled less than 6 months from our referral, however with 10 days left until we traveled we received news that she had succumbed to pneumonia again and was in the hospital, this time in the ICU without her beloved nanny. After a week she recovered once again and when we landed in Beijing she was in a hospital, unaware that in a few short days her life would change forever.

Almost three weeks later we landed in our home town relieved that we had survived China with a cyanotic baby, a portable oxygen concentrator and all 16 lithium batteries that came with it, a nebulizer, and a sack full of medicine. We began counting the days until we could take her for heart surgery, something I never expected to look forward to – but it couldn’t come soon enough. A month after we came home it was finally time for her heart to stop working so hard. It was surgery day. This little 16 pound warrior had been hospitalized more times than our whole family combined in only 20 months of living. This one would be different though, this time her Mama and Daddy were with her.

I didn’t expect my heart to be the one to feel so broken when they carried my little warrior away, but it did. It is the strangest thing to have your child so vulnerable and unavailable to you with their heart exposed and being run by a machine. The benchmarks of the day that I vividly remember was when they came to tell me that she was under anesthesia and they were beginning. Next, they came to tell me she was on bypass and was doing well. Then, the VSD (ventricular septal defect – hole between ventricles) was repaired and they were going to attempt to repair (not replace) the pulmonary valve.

When they told me she was off of bypass and her heart was beating on her own, her oxygen saturation higher than it has ever been on her own, her fingers and toes already pinking up – on her own… well, it became one of my favorite moments of my whole life. I kinda lost it a little. The floodgates opened and relief washed over me like never before.


amy5


They called us so that we could see her come through the doors on her way to the Cardiac ICU. I watched the doors, waiting for them to separate and held my breath. When I laid eyes on her and her lips were pink and despite an 8 hour open heart surgery she looked healthier than I had ever seen her, I exhaled like you would not believe. Those days in the hospital were wild. Her lungs had been so week from chronic pneumonia so they were an easy target and 48 hours later she had it again. She battled again and again but this time we battled together. It was one of the most difficult 10 days of my life but I wouldn’t trade it for anything. I’m so grateful I could battle with her. It taught me a lot about how she’s wired and what a warrior she truly is.


amy4


Our children who come from hard places aren’t just battling their physical challenges. They battle their default reaction to melt down and to panic over something seemingly ordinary. They battle vague memories of hospital visits, abuse, restraint, abandonment, pain, their birth country, and sometimes even their birth family and the loss of what was their beginning. Many battle fear and I see it in Grace.

Fear that we will not be there, fear that when we leave we won’t come back, fear that we won’t come quickly when she wakes – even though we always have. For weeks there was an obvious fear of all things medical related and rightfully so. With more hospital visits than I could count on two hands, how could she not be afraid? But now – now doctor visits are relaxed. Blood work, on the other hand – not so much. There has been measurable healing but deep wounds leave scars and sometimes emotional scars look different than you would expect. Sometimes they look like tantrums with no warning, nightmares, night terrors, violent behavior, crying for “no reason”, panic at a car seat or seat belt or a restraint on a carnival ride, avoiding of eye contact, unexplained crying or anger, and distrust.

Sometimes unless you know someone’s back story you don’t really see the whole picture because it helps foster compassion when we make room for empathy. We don’t justify bad behavior, but unless we know what’s driving the behavior how in the world can expect healing and new improved behaviors? I want people to know her back story, I need people to understand that she has not had an ideal beginning. She has very real deep rooted triggers and fears and memories that probably don’t make sense to her any more. She was very well cared for and learned to love and receive love. Many orphans aren’t as blessed as she has been; but she has experienced very real trauma and it absolutely affects her and influences her behaviors still today.


amy3


The cool thing that happens when you have a child warrior who battles daily to grow, live, heal, recover, and thrive is that you become a warrior too. You battle on their behalf against the people who say: “she will never… she will always… she might not ever be able to… she could always struggle with…”…why does she act like that?… Before I knew it I became a warrior right along with her, determined to prove the naysayers wrong because I know her potential is limitless. I know that her fighting spirit and her strong will came from a God who beautifully and wonderfully created her inmost being and despite her “defects” and in spite of her story she has emerged with the heart of a warrior so ready to love and be loved, independent, and determined to not lose anyone she loves or be left behind.

Sometimes the bravest, fiercest warriors come in the most unlikely packages and many fight battles we can’t begin to understand – but we can battle with them and become warriors and survivors together.


amy4




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