Riley and her twin sister Olivia were born at 27 weeks in NJ. When she was 2 weeks old, Riley developed severe necrotizing enterocolitis which caused her to lose the majority of her intestines. She was left with 15 cm of intestine and a diagnosis of short bowel syndrome. She requires IV nutrition (TPN) to survive, which damages the liver and led to severe liver disease. Her liver was going to fail before she was big enough to qualify for a transplant.
We fought hard to get Riley the insurance she needed to be transferred to Boston Children’s. They have an exceptional intestinal rehabilitation program and a lipid (component of TPN) that would protect and heal her liver. Going to Boston would give Riley the best chance of survival, and we knew that we had to do everything in our power to save our baby.
We had no idea how we were going to manage our stay in Boston. We are a young family with twin babies, and we were going to be far from home for a long time. We knew we needed to do what was best for both of our girls, and wherever we were we needed to all go together.
We would never have been able to afford to stay in a hotel the whole time Riley was inpatient. It was impossible to work while I stayed in the hospital with both babies in NJ for 3 months. At the same time, we could not stay in the hospital with Olivia, Rileys twin sister, due to COVID restrictions. We needed a safe place to take turns watching Olivia while the other parent went to be with Riley in the hospital to learn about her specialized care. Ronald McDonald House was free and that made it possible for us all to be in Boston with Riley as she fought for her life.
The RMH apartment was beautiful and we loved it so much. It was truly a second home for us during our stay in Boston. It was safe and cozy, stocked with anything we could need. We had a beautiful view of the sunrise over the harbor every morning, which was a daily reminder of the wonderful things in this world even during a stressful time. It allowed our family to stay together and kept us as a strong family unit. RMH made our first Thanksgiving and Christmas together as a family of 4 very special with delicious meals, surprise gifts, and a gingerbread house to decorate. It brought us so much joy.
We loved walking on the paths outside the apartment building, which are right next to the harbor and was a great way to get fresh air and take in the beautiful views. We loved seeing the wind sculptures and the USS constitution ship. We also enjoyed bonding over board games in the apartment, getting creative with art supplies, and reading and watching movies that were stocked in the apartment!
The entire RMH staff was incredible, always kind, helpful, and extremely supportive in every way. The Boston Children’s staff was amazing and made sure Riley was well taken care of, even when I couldn’t be there. Everyone at RMH and BCH made us feel like we weren’t alone while we were almost 6 hours away from home.
I would like to tell other families to keep the hope and faith. Positive energy is powerful and healing. Find ways to make the hard times a little lighter, find things in every day that fill your heart with gratitude, and stay strong even when it feels difficult. You are not alone.
RMH, hospital staff, you are doing God’s work. Without all of you, I wouldn’t be sitting here with both of my babies. My heart is so full of gratitude. At the NICU in NJ, the nurses would tell the “sad story of Riley” over and over again at every shift change, and they would sound all sullen and depressed and sorry for us. I would try to keep a bubble of positive energy as I sat there with Riley and read to her every day, while she was on a ventilator, so swollen she couldn’t move or open her eyes. At one point I couldn’t take it anymore; I went over to them and said enough of the pity party over my daughter. Things are not good but with that attitude, it will actually be the “sad story of riley” because you all sound like you’ve given up on her already.
I just want to say that Riley is thriving, and it would not have been possible if it wasn’t for the support of all of you. You believed in Riley and you believed in our family and were there to support us the whole way and it means so much to me. Thank you for taking such good care of us, and turning what could have been our very sad story into one with a beautiful happy ending.