Heart Hero Abby Grace

Heart Hero Abby Grace
written by Sarah, Abby Grace’s mom
Abby Grace is a hero in so many ways. She was born in China in August of 2014. We have two boys from Ethiopia and knew that we wanted to grow our family through adoption again and started looking at children that were on waiting lists. Many CHD warriors are on the waiting lists, especially in China. Some receive surgery or other treatments but some orphanages cannot afford surgery, so the child has to wait on a family to have the surgery done.
In early 2016, we saw a picture of this smiley little girl and my husband immediately told me to look at her file. She had a large Ventricular Septal Defect (VSD) and severe Pulmonary Hypertension and had not had any surgery. She was about 20 months old. I looked up VSD surgery and found was that it is one of the most common. I did not even take into consideration how damaged her lungs would be because of the delay in surgery. I was very naive and had no idea how involved a heart surgery would be. I figured we would get her heart fixed and them go on with life as we knew it, just with another baby. The internet said VSD repairs can be as quick as a three day hospital stay.
When we picked her up in China, I knew from the minute I saw her that I had a kindred spirit in her, but it took her longer to realize it! She was so tiny (about 15 lbs at 20 months old) and had retractions with each breath. The first few days she cried some, but really after a few minutes of crying she would stop, mostly because of how tiring just living life was for her. Our hotel room had a crib for her and after I made her practice walking, she would point to it and let me know she wanted a nap. She would not ride in a Ergo carrier because it was such a struggle for her to breathe. I now think as I carried this tiny girl all around China, people must have thought, “Wow, that baby looks sick!” But all I could see was how much I loved her and how I could not wait to get her home to show everyone the adorable baby that God placed in our family, and to patch the hole in her heart.
After a long flight back to America, we started the process of getting her to be seen by a cardiologist. We had a PCP appointment where they saw her pulse ox was in the 70’s so we were placed in an ambulance and saw a cardiologist that first day. Not exactly what we had planned as her welcome to America and her new life, but it got us on the fast track to fixing her heart! Everyone at Arkansas Children’s Hospital was amazing and they took such great care of her. They also have great support for the families and we were given meals and fun scrap booking classes while she was healing in the hospital. She had her VSD patched in May of 2016. She needed to stay with the breath support ventilator about eight days after surgery mostly because we had no idea what the pulmonary hypertension might do. Those days of seeing her hooked up and a machine breathing for her were so difficult and way outside of my mothering experiences with my other two boys who really have had no health issues.
Our boys had barely met their sister before she was in the hospital and after she was hooked up to monitors and wires we kept them from coming to see her too often because it was traumatic for one of them in particular to see her and the fact that we could not just bring her home made them sad. We also discovered that she had a swallow difficulty and had to be on a feeding tube for several months. It just seemed like everything was an uphill battle for Abby Grace, but with each turn, she fought bravely and was willing to do whatever the doctors asked of her. We see the hand of God persevering and healing her through all this past year and it is amazing to see her today. She is now off all medicines including the hypertension medicine that we thought she might be on for longer. She also has passed her swallow test and can drink liquids again. No more thickener! I want her to know how much she is loved and how proud we are of her for the brave ways she lives.
At first, she was so frightened by nurses and doctors, understandably so; she had just arrived in America, with a new family, new language, all while being sick. Thankfully all the care made her fall in love with us as her family and as time has passed she has loved going to the doctor or therapy. She sits still through an echo (which is amazing since we had to sedate her to get a good echo before surgery) and has had untold hours sitting eating at swallow therapy. The months of being in the hospital were so eye opening for us. We asked so many questions of any medical professional that we could and found out anything we could do to help Abby Grace. One thing we loved was getting to know other families who were also had kids in similar situations. Being able to support each other and be supported was such a necessary joy for our family. I left the hospital not at all naive and I could notice things about her breathing or swallowing or if she was needing oxygen that I would have never noticed before. I was able to do medical things for her that I had never thought possible thanks to patient caring nurses who would teach me. Putting in an NG tube or replacing a Mi-key tube was not the huge ordeal I had imagined they would be.
Abby Grace now calls her scar her “Brave” and is not shy in telling people about her surgery. Watching her play with others, I am amazed at how far she has come. She is still small, but not at all the shy, tired, sickly looking girl that we joined our family a year and a half ago. She does not like to take naps and I remember those first days where she had to beg for a nap because she was so tired and I am amazed at how far she has come. She is so bright and picks up new things very quickly.
Adoption changed our lives in so many beautiful ways, but Abby Grace changed them in even more ways. Soon after we were admitted to the hospital and I was overwhelmed with everything, I called a friend who also has a CHD kid, and she said, “God picks our kids for us, and he knew that you have what it takes to be a heart mom.” Now, I have had moments when I wonder if that’s really true, but in the quiet, I feel the Lord giving me reminders that He created Abby Grace with the hole in her heart and with other issues for a reason and through this situation, we could all see the glory of God. He could heal here on earth or up in heaven, but for me to stay connected to Him is how I find out how to live and walk in the midst of the dark days.
And I am filled with joy when she smiles, running after brothers, or jumping in a swimming pool.

Posted in: Advocacy, Awareness, CHD, Education, Heart Hero of the Month, Heart Heroes

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