On Nov. 28, 2018, Lydia fought her way into the world at a hospital in Richmond, Va. She weighed 8 pounds 4 ounces. You see, Lydia's always been a fighter. She fought her way through an IUD to be conceived and defied the odds and grew into a full-term baby. We need your help as she continues fighting during her long road to recovery.
We knew immediately something was wrong with our sweet baby. Her legs did not bend and her fingers were irregular. She also did not breathe well. The doctors let us take her to the postpartum wing of the hospital, as her color was good and her vitals were fine. Within a few hours, however, our baby would be transferred to the Neonatal Intensive Care Unit of the hospital and our lives would be transformed forever.
Lydia has been diagnosis with arthrogryposis . It's a rare disorder where the joints and muscles constrict. It occurs in 1 out of about 3,000 births and can have a severe impact on a person's ability to walk and use his or her arms and hands. As a result, Lydia's fingers are stiff and often closed, her hips are out of socket and her feet and legs are not straight. To begin the process of repairing her joints, her legs were placed in casts at three weeks old. The casts are replaced weekly in an effort to straighten her legs and feet.
In addition, Lydia was diagnosed with laryngomalacia, which causes the airway to be soft, and a recessed tongue. This caused her to have difficulty breathing, and it restricts her ability to swallow. At four weeks old, Lydia underwent surgery and had a trach inserted into her throat and a feeding tube was placed into her stomach. She is now breathing through the trach and eating through the feeding tube.
Lydia should be released from the hospital in a few weeks at just over two months old. She is stable and doing well. We are scared and excited about this prospect. We want our baby at home, but we must take care of a baby with special needs. We know nothing about taking care of a baby with a trach and a feeding tube. The nurses at the hospital are teaching us, but eventually must learn to be independent and give Lydia the care she needs on our own.
Lydia faces a long-road to recovery Lydia's long-term prospects are good, but she faces numerous obstacles on that journey. She will have more surgeries in the next few years to repair her hips and other joints. She will also need to see an occupational therapist, a physical therapist and chiropractor to improve her muscle tone and give her the best chance of having a regular life. In addition, we will have to make multiple trips to Philadelphia to see a hand specialist at the Shriner's Hospital. Our current orthopedic surgeon says he is one of best pediatric hand doctors in the country, and she recommends that we have him do the needed repairs to the hands.
We are seeking money not only for the urgent care that Lydia needs but also for the lost income we will suffer from taking Lydia to the numerous appointments. She is going to need a lot of individualized attention over the next few years. Hopefully, insurance will pay for the majority of the care, but as with anything medical, the actual costs are unknown. We are blessed to have our family and caring friends with us on this journey.