Joy in Broken Hearts

February 13, 2018 cleft palate, complex heart defect, developmental delays, Family Stories, February 2018 Feature - Heart, feeding tube, Heart System, hospital stays, mitral valve regurgitation 0 Comments

I first saw my daughter’s face on my thirty-first birthday. There she was. Staring out at us from a computer screen. Her diagnosis was cleft palate, congenital heart disease, and delayed development. We sought out expert advice from an international adoption specialist and then took the leap of love and said Yes.

But as I began to comb through Emma’s file I realized that she needed to come home sooner than later. An updated report sent to us said, “Poor prognosis.” How do you even register those words in relation to your child? So with help from other adoptive families we began to expedite her process home.

Our time in China I spent mostly terrified that something would happen with her heart and just prayed for the weeks to speed by so I could bring her to a cardiologist. The first cardiologist appointment was long but the results were encouraging. Her file had been correct about most of her heart condition. However, her heart function looked steady on the medications and we would just wait and watch to see how her heart would do.

We spent the first two months home in countless doctors’ offices and therapies. We also had her palate surgery. Near the end of the second month, Emma’s health began to change. Pneumonia, flu, vomiting. They all seemed to be tied together as a normal illness so we didn’t expect her heart function to suddenly decrease. Yet, it still wasn’t time for surgery. We were to keep a close eye and prepare for a heart catheterization, to see exact measurements of her heart, in a month.

But, at the end of the fourth month, home Emma couldn’t hold any food down, and she was growing listless. A trip to the local ER ended up in an ambulance ride to our children’s hospital. There they spent a week trying to stabilize her heart enough to be able to take her into surgery. Her mitral valve’s regurgitation had worsened significantly and needed to be repaired — and if it couldn’t be repaired then it would have to be replaced by a mechanical valve.

The day they took Emma into surgery I couldn’t cry. I was just empty. I waited for our surgeon to update us and when he did, the news wasn’t what I was hoping to hear. The valve could not be repaired. She had a mechanical valve placed, which meant she would be on blood thinners for life. When I saw her after surgery Emma’s body was so still and my heart hurt as hers did. I was thankful for the sedation, wishing it would last and she would be pain-free for as long as possible.

But Emma didn’t stay sedated long and began to move and cry often. She was restless and not comforted in my arms. I remember sitting by her bed, counting her toes and touching them softly to have contact with her – in whatever way she felt okay with.

Emma grew strong so much quicker than I thought. Her desire to move and walk holding our hands was incredible, and soon we were discharged. But, less than a week later, we were back in the ER, taking another ambulance ride as her oxygen levels dropped, and her breathing was so labored she was sweating. At last, I wept. The exhaustion of the four previous months, and knowing we were going back in — and without knowing why or what it all meant. I let the tears fall as I sat in the dark with Emma.

After a few days they ended up draining her chest. The pleural effusion had filled her chest with fluid that was compressing her lung. We stayed about a week and then were finally discharged once she had drained enough fluid and her lungs were clear.

During all our hospital stays and doctor visits our family of four struggled. Our biological son is three and, as during the night only one adults could stay in the hospital with Emma, there was a lot of time apart from one or both parents. My husband, Matthew, worked and would drive to the hospital almost daily as I stayed with Emma.

If I am completely honest, our family felt exhausted and broken.

Yet, so much good was happening in the midst of the hardest nights. Emma began to thrive. She began to gain weight, eat on her own, talk more. She began to walk, and become a little girl. She began to find comfort in our arms and stability in our hearts and home.

The adoption journey is not just one thing. It is not just one moment — a surgery, a family day. It is not just one emotion — fear, joy. It is a million minutes of emotions. The journey is not just good or bad… hard or easy.

Joys we first experienced with Emma are like quiet joy. The way she cuddled into us the first day we met her. How when she first came to us she was too wobbly to sit by herself for any length of time but we found that, when she would fall back on a pillow, she would laugh because she liked the feeling. Now she can walk and do her funny little jog/run as she laughs and plays. She is strong physically now. She climbs stairs up and down, she amazes us and her physical therapist. Now Emma’s joy is quick steps and bringing us her shoes (the prettier the better) for us to go out and about.

She ate only rice cereal and milk through her NG tube when we first got her, but my husband decided she needed to try ice cream so a few days after we’d had her he bought ice cream for her to try. It is safe to say she likes ice cream. She also loves chocolate. Since her heart surgery she has gotten off her NG tube and is able to eat food with texture and sustenance; she still drinks Pediasure for calories but the gains she has made amaze us. Her favorite food is vegetable lo mein from our local Chinese restaurant. She never has problems with eating that. Seeing Emma eat well is joy. A full body joy.

From the days we spent in China we noticed her goofy personality. Silly things would make her smile. Once home she laughed — mostly at funny things her brother would do. She crinkles her nose and laughs. Emma’s personality is a joy. Laughing goofy joy.

Would I trade the dark party for the light? No, the darkness is part of the story. But in telling Emma’s story, it is also a story of joy.

Some of my favorite moments are when I pick her up from sleeping and she tucks her hands to her chest and cuddles down into me. I hear her mechanical valve click. I hear her breathing. Feel her weight sink into me. And there is quiet joy. Her goofy and silly smile lights up our home.

There are moments of hard where I am worn out with doctor/therapy appointments and my toddler son is worn thin from all this hard that he has had to do. But there is joy.

Let not the hard moments of any journey keep you from seeing the joy that is given in the gift of adoption.

Emma’s broken heart will need surgery again another day as she grows and needs a new mechanical valve for her heart. But there is joy in that as well, because she is here, in the best care at our children’s hospital and, through it all, surrounded by her loving family.

– guest post by Beth-Anne

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