The Decker Family Story
Our family was blessed with fraternal twins on November 30, 2012. Ally Grace Decker and Bailey Wilson Decker were born 5 weeks premature and spent 10 days in the NICU at the Reading Hospital and Medical Center. Bailey was just 4lbs 1oz and Ally was 5lbs 12oz. Both were born with medical problems.
Ally was born with a condition called craniosynostosis. At her first check up, we were referred to Dr. Mark Dias at Penn State Children’s Hospital. It was a very scary time for our family. We had no idea what to expect or how to deal with this condition. Dr. Dias was wonderful and walked us through how he would have to break Ally’s skull in 6 places in order to create a false soft spot so her brain could grow as she grew. Her surgery took place at the end of January 2013, when she was only 2 months old.
We stayed at the Ronald McDonald House during Ally’s surgery in January of 2013 for 3 days. My husband and I took turns staying with her in her room while the other parent would go back to the House and nap. Having the House available to us meant that we could stay together, be a support system for one another, and not have to commute an hour each way to and from our home in Wyomissing, PA.
Since the twins were only 2 months old, our nanny took care of Bailey at home, and Jon and I stayed with Ally the entire 3 days. I would stay up with her all night, holding her and attempting to feed her and then Jon would come and relieve me during the day. I would then go back to the House and nap. It was so wonderful to know that we had a place that was warm, comfortable, and welcoming to rest during this very stressful time. We did not have to leave our daughter’s side or commute back and forth from our home.
A few months later, Bailey had problems gaining weight and was constantly thirsty. He underwent lots of blood work, a second opinion, a water deprivation test and an MRI at St. Christopher’s Hospital for Children. We also got a third opinion from Children’s Hospital of Philadelphia. During the MRI at St. Christopher’s, they discovered Bailey’s pituitary gland was abnormally small and that he also had a chiari 1 brain malformation. We went back to Dr. Dias at Penn State Children’s Hospital and he did a repeat MRI of his brain, lumbar and thoracic spinal column. In June of 2017, he determined Bailey needed surgery to repair his chiari brain malformation because it had grown in size and caused a pocket of fluid in his spinal column.
Jon and Ally stayed at the House for 4 days during Bailey’s brain surgery in June of 2017. I stayed with Bailey in the hospital. Once again, having the Ronald McDonald House available meant our family could stay together and support each other during a very difficult time. Ally and Bailey are best friends due to their twin bond and are used to being together all the time. I believe having her nearby in the House and available to visit him frequently during his stay was helpful for his healing process. It was also helpful for Ally to be near her mommy and brother and be able to visit us so quickly and conveniently via a fast, easy shuttle ride back and forth from the hospital to the House.
If the House had not been available our family would have either stayed at a hotel or commuted an hour from our home in Wyomissing. We would have endured immense stress and emotional pain from not being able to be with our children at all times. Not having to pay to stay in a hotel was an incredible relief.
During both of our stays, the meals provided by the volunteers were amazing and the volunteers always had smiles on their faces even though they knew that every family staying there was going through a difficult time. Our favorite part was being around the other families staying at the House. Learning their stories made our journey easier, especially knowing that we were not alone. Looking around at breakfast and nodding “good morning” to others made our stay communal. We are so blessed to have this facility alongside Hershey Medical Center. Please, please continue to financially support this wonderful place. Thank you to the donors and volunteers. You are all amazing people who made a very difficult time for our family and many other families, much easier to bear.
We hope that we never have to walk through the Ronald McDonald House doors again, but we cherish in our hearts the thought that if needed, the House is there for us and all the other families.