On Jan 10, 2020 at RMH in Harrisonburg VA, our little girl Jacqueline Emily Kirby was born. We were thrilled to have our new baby girl. The delivery was complicated so we decided a C section would be best because baby girl wasn’t responding well to the pitocin. The C section was complicated too because Jackie was a big girl and mommy, Joni, had to be cut horizontally and vertically. This made it hard on mom from the beginning. Jackie seemed fine to us but sleepy. On the third day of her life the doctors came to us and said something is wrong with her and she is the floppiest baby we’ve ever seen. They said that they didn’t have the knowledge or technology to help her and recommended she go to UVA in Charlottesville Va. We were devastated and caught so off guard. How could this be??? A special ambulance unit for infants was requested for her.
We followed them over and she was admitted. At first UVA was lost as to her condition. We stayed with her everyday. On the fifth day at midnight I was there with Jackie and she stopped breathing. I alerted the nurses and a team came and intubated her and the ventilator started breathing for her. We were crushed once again. At this point a doctor came in and said we believe she has non-ketotic hyperglycinemia which is a genetic disorder with no cure.
She would have seizures until she would one day pass away.
Again our hearts were torn from our chests. They recommended we just pull the ventilator and let her pass away peacefully. We cried non stop but talked about if she were to pass away we would donate her organs to help another child so another family wouldn’t have to suffer like we were. A friend sent me a private message stating that there was a doctor in Colorado that specializes in this disorder. I contacted him immediately and asked his opinion. He asked for an MRI of her brain and it was sent. He was thinking she would not develop either and recommended letting her die peacefully too but also gave advice on how to keep her alive if we decided to. Joni and I decided we couldn’t just let her go and that we would leave it in God’s hands. Jackie was started on medications that might help. I read to Jackie every day. Curious George, Zombielina and Snowy bear were just three of the books. I noticed when I read to her she would start breathing above the ventilator, so I continued to read to her night and day. Every time I’d read she’d breathe above the ventilator. After about a week Jackie started breathing above the ventilator on her own. Then while I was reading Zombielina, she opened her eyes for the first time and looked at me. I was amazed and so happy. She had never opened her eyes before. The doctors recommended taking her off the ventilator in a couple days because she was doing so well but ended up doing it the next day. She was still on a feeding tube through her mouth for her feed and medications but doctors decided they wanted to move it to her nose to see if she would try to eat on her own. The next day she was squirming around and ate a 1/4 of her feed on her own. She would look every time you spoke to her and seemed aware of what was going on around her. d aware of what was going on around her. She began to eat solely on her own after being fed partially through the machine after a few days. Then the doctors removed her feeding tube completely. We stayed at the hospital feeding her throughout the day and night on a three hour schedule. Joni and I took turns on the night feeds. We were trained on how to give her medications in her bottles. The day before Jackie was one month old, we brought her home. She continues on a three hour schedule with Mom and I taking turns with her care and administering her medications. She is a beautiful, bright eyed baby girl that has beat the odds so far. We have prayed for her all along and thank God daily for this little miracle.
I continue to ask for prayers for her and her undetermined future. She has us and a community that loves her very much.
I continue to read to her daily.