Congenital heart disease was one of the special needs that I never felt we could handle. It was “too serious,” among other things, and I couldn't imagine exposing ourselves to the potential heartbreak of losing a child.
We hadn’t been looking to adopt again, but when I saw her picture, I had an unexplainable feeling that she was our daughter.
The girl, who was known as “Gabriella” on the Waiting Children list, had a severe congenital heart defect. When her picture and bio first appeared in our inbox, it was on a snowy day in February when all the kids were home from school because of the weather. We hadn’t been looking to adopt again, but when I saw her picture, I had an unexplainable feeling that she was our daughter. We asked for her file and over the next week we researched congenital heart defects, we looked at her photos, videos and medical information, and we sought counsel from our doctors, family and trusted friends. We also called families who had adopted children with similar conditions. The bottom line was that no one could say what her prognosis was until she got to the United States for evaluation and treatment, and no one could say how long she would live, even once she got here. We agonized over the effect that gaining and then losing a sister would have on the boys and Leah, and on us.
The staff of All God’s Children was outstanding, answering our questions day or night, and they allowed us time to research, think, and pray. At the end of the week, Molly and the boys were scheduled to go to a middle school winter camp, and that weekend turned out to be a good time for us to slow down a little and process things separately. By the time we were back together, we both knew that God was calling us on this adventure.
On February 18, we called Tiffany at All God’s Children and said yes.
We decided to name her “Lybbi,” which means “God’s promise” or “pledged to God.”
Lybbi was found abandoned near the Xiamen Zhongshang Hospital in October, 2012, when she was two months old. She was thin and weak, and her lips and extremities were reportedly black. She was taken to the Xiamen Children’s Welfare Institute and underwent heart surgery in January, 2013. The surgery was reportedly touch and go, but she survived and went back to the orphanage upon her release from the hospital. Since the surgery she had been hospitalized again with pneumonia, and she wasn’t gaining much weight. When we accepted her referral, she was on oxygen and a feeding tube.
Lybbi was in need of a heart catheter to fully determine her condition, but, due to the difficulty she had with her surgery in 2013, the doctors in China were very reluctant to do the heart cath or any future surgery. If she stayed in China it was pretty certain that she wouldn’t survive long.
Consequently, we, along with All God’s Children, did everything we could to expedite the adoption process so that she could come home and get the medical care she needed. After we made the decision to move forward, life was crazy for three weeks, as we did paperwork that normally takes three months or more to complete. There was miracle after miracle along the way, from finances to amazingly fast paperwork processing, and the adoption paperwork process took four months from start to finish – the fastest our agency had ever done.
We learned that people all over the world had been praying for Lybbi, and for us, before they even knew who we were.
God provided everything throughout this process; exactly when we needed it. We learned that people all over the world had been praying for Lybbi, and for us, before they even knew who we were.
Our trip to China was exhausting, terrifying, and amazing. It was the hardest thing we’ve ever done, and it was much different than our trip to bring Leah home. Lybbi could hardly kept anything down, and Molly had her own pharmacy in our hotel bathroom crushing pills and drawing them up with water in a syringe. We learned that she was so sick that there was a chance she wouldn’t survive the flight home. The same people who had been praying for Lybbi, and many more, joined together to pray overnight as we flew home, and she
The next few months were a blur of medical appointments, including a heart catheter where we learned that Lybbi was even more complicated than we thought.
Lybbi is single ventricle; the right side of her heart didn’t develop. We learned that Lybbi’s Glenn surgery in China either wasn’t done properly, or it failed, and it’s essentially as if she never had it. As a result, blood that’s supposed to be getting to her lungs to get oxygenated wasn’t getting there. Additionally, the right side of her diaphragm was elevated, which caused her right lung to not develop, causing difficulty breathing. This was probably a result of the phrenic nerve being damaged during the China surgery. Lybbi’s body compensated for all of this by figuring out a way to re-route her blood enough to keep her alive temporarily.
The first order of business was a diaphragm plication surgery, to allow space for her lung to develop. Next was a G-tube. Then, over the course of the next three years, our life with Lybbi consisted of feeding pumps, oxygen, medical appointments, physical therapy, occupational therapy, sleep issues, feeding issues, and an amazing amount of joy. Lybbi was, and is, almost always happy. She has an infectious smile and is loved by everyone.
This summer Lybbi’s medical team determined that it was the optimal time for her second stage heart repair, the Fontan surgery. Due to Lybbi’s complex anatomy, her cardiologist warned us that she was at risk for a prolonged recovery and could be in the hospital for 4-5 weeks. Lybbi’s fans prayed again, and she rocked her surgery, getting discharged in just eight days. Her surgery has given her newfound energy and stamina; before she couldn’t walk from the car to her school; now she runs just about everywhere she goes.
We had a sobering follow-up cardiology appointment where we discussed all of the potential post-Fontan complications that Lybbi could experience. But we learned early on to enjoy every day that we have with her, and right now she’s doing great.
Lybbi’s story is way bigger than us; that was evident from the very beginning. We’re excited to see it unfold, and we pray that she’ll live a long time so that she can know how much she was loved and prayed for.
Jesus did many other things as well. If every one of them were written down, I suppose that even the whole world would not have room for the books that would be written. John 21:25
Comments