Graceful’s Heart Story
| Told by her mom Kristy.
Diagnosis: DORV, TGA, VSD, ASD, pulmonary stenosis, underdeveloped left ventricle My husband and I were seated in the waiting room, excited to see little ‘Lump’s’ image and hear a heartbeat during our comprehensive ultrasound. “We don’t want to know the sex,” we told the technician as she began the ultrasound. We listened to the beautiful sound of the heartbeat; the sound of a miraculous life inside my body. It brought tears to our eyes. “I’m not seeing everything I want to see in the heart,” the technician states. (It’s okay, I’m staying positive. ’Lump’ can tell when I am stressed or anxious. Yoga breathing…) After her reassurance that 90% of the time “it’s nothing”, we were referred to a specialist. We said a prayer and tried not to feel the injustice of a not-going-perfectly first pregnancy. Initially we felt very blessed. McKenzie and I were married for three years and within only a month of trying to start a family, we were successful. We never dreamed the baby might not be healthy. The ultrasound at the specialist’s office was horribly quiet. The air was thick with anticipation, worry, and tension. For 45 minutes I prayed to the Lord to keep me calm so the baby wouldn’t feel any negative vibes. (Why was it taking so long? Why was nobody talking?) Finally, in walked our doctor. He proceeded to tell us that all of our hopes and dreams were shattered for a healthy baby. All of our expectations were thrown out the window. Everything I had been doing and avoiding to give our baby the best chance at life was worthless. We messed up; big time. We were losers before the game ever started. I must have done something to cause or deserve this…. Actually, he said our baby had multiple complex heart defects, but all I could hear was an enormous wave push me into my husband’s arms and swallow us up. Despite the emotional turmoil, I loved being pregnant. After about 48 hours of contractions, my water broke at midnight on July 5th, 2006 with the sound of fireworks in the background. It was the most exciting time of my life. By 2:48 am, we were surprised and blessed with a baby girl born by c-section. We named our daughter, Graceful Heron. We praised the Lord that we could hold our baby shortly after delivery and that she did not need emergency surgery as expected. The doctors were no longer able to see coarctation of the aorta. Her other defects remained, but seemed to be working together to her benefit. Graceful was born with double-outlet right ventricle, transposition of the great vessels, ASD, VSD, pulmonary stenosis, and an under-developed left ventricle. Fortunately, we didn’t see that. We saw an amazingly beautiful miracle baby and fell instantly, hopelessly in love! Within a week, we were able to take Graceful home, once her eating improved. We were told to keep track of how much she was eating since her weight gain was of such importance. The doctors wanted her as big as possible before any surgery was performed. We were offering Graceful milk at the slightest hint she may be hungry. Sometimes it seemed that was all we did. A quarter ounce here, half an ounce there; we celebrated when she drank two ounces. After the follow-up appointment with her cardiologist, we were told Graceful’s oxygen level was too low and she needed surgery that week. A few days later, in the narrow, empty hallway of the hospital basement, we handed the love of our lives over to a stranger who would be preparing her for surgery. At 23 days old, Graceful had a thoracotomy. The doctors performed an atrial septostomy and placed a BT shunt; just palliative fixes until she was strong enough for the complete repair. Five days later, we took our baby home and tried to organize some kind of routine existence for our family. Her oxygen level was still just in the high seventies to low eighties, so we were told not to let her cry for more than 5 minutes. We could handle that. We were so in love and in awe of our little blessing, we would do anything for her. I was searching for a book on congenital heart defects at the library when I came across a novel about an author’s experience shadowing an elite pediatric cardiac surgeon. My husband and I could not put it down. We were bawling as we read, but it all hit home. That is when we decided to contact Texas Children’s Hospital and get Dr. Charles Fraser to do Graceful’s upcoming “big” surgery. He is one of the best pediatric cardiac surgeons in the country, if not the world. We wanted our daughter to have the best chance for survival. We would make it happen, no question. Dr. Fraser accepted Graceful’s case and the adventure began. We scoured the internet and asked everyone we knew for ideas on how to get to Houston without completely going into financial ruin. It took much perseverance and motivation on our part, but the Lord paved our path. With donated plane tickets, Ronald McDonald House for housing, and a church at home backing us up with prayers and financial assistance for bills, we were on our way. November 5th, Graceful turned 16 months old, met Dr. Fraser for the first time, and took her first unassisted steps back and forth through our room at the Ronald McDonald House. Three days later she endured her open-heart surgery, a modified REV procedure. Dr. Fraser used a bovine conduit to connect her right ventricle to her pulmonary artery and patched Graceful’s large VSD with her own pericardial tissue. McKenzie and I meditated on Isaiah 42:16 during the 12 hour surgery. Our heads spun around each time anyone entered the waiting area, hoping it would be the nurse with an update for us. When we finally got to sit down with Dr. Fraser, I don’t think either of us were breathing. “Surgery went well…Graceful in on her way to the ICU….It was a difficult surgery due to the placement of….” Dr. Fraser went on to explain the procedure to us. I felt immense gratitude, respect, admiration, and awe for this amazing man of God who held my daughter’s future in his earthly hands and gave her a chance for a near-normal life. Graceful successfully battled a high fever after surgery and overcame acute renal failure. She had a few appointments after discharge from Texas Children’s Hospital to monitor fluid build-up around her heart. Our family felt very blessed with a relatively uneventful recovery. We saw families and heard of families that were not as fortunate. We were able to fly home to Oregon exactly one month after arriving in Texas. The changes we saw in our daughter were dramatic. She left Portland still a baby and came home a little girl. We are amazed by Graceful daily. To describe her energy level now, we often use the term ’crazy monkey’. Her appetite is that of a heart-healthy toddler. Graceful will need more surgery as her body grows, but for now we are celebrating life as a family. She loves the outdoors, swinging, reading, and hiking. Graceful told us she wanted to climb mountains like her daddy who climbed Mt. Hood for her. As we try to teach her about the world, Graceful shows us how to feel and truly exist in it. |
~Kristy, August 2008 |