THE BARLEY FAMILY

In August of 2016 we received the best news! We were pregnant with a our son Tucker! After going for the normal routine ultrasounds at our 23-week anatomy ultrasound we found out some of the worst news any parents would want to hear. “ Your baby has Hypo-plastic Left Heart Syndrome.”  So many questions rolled through our heads. What is Hypo-plastic Left Heart Syndrome?  Will he be OK?,  What do we do next?,  Along with many other questions.  When sitting down with the Doctor she drew pictures and explained to us that Hypo-plastic Left Heart Syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. HLHS is one type of congenital heart defect. Congenital means present at birth. She also continued to tell us that Tucker was going to need several open heart surgeries, one being within the first week of his life.

On May 31st, 2017 at 5:19 am our journey of having a baby with HLHS had begun. After being able to spend some time with Tucker the NICU team had to take him up to the unit to start the process of monitoring him and Ed and I were sent back to our postpartum room. There were many wonderful people that we spoke to, one of those being a social worker that explained to us that most families that have HLHS babies could end up spending several of months at the hospital. This is when she introduced us to The House Within the Hospital at Ronald McDonald House Charities.

The House Within The Hospital was a blessing to Ed and I knowing we could be so close to our son during our 90-day stay. It was a place where we knew we could go after a long day, whether it was to get a coffee, snack, dinner or just unwind. On our roughest days, we knew we could come up and have a great night of conversations with the wonderful staff. The staff was always so helpful, respectful and just there for you on the days you needed a laugh. If there were nights that we couldn’t sleep the staff was always there to comfort us in the new beautiful Family Room in the lobby of Golisano Children’s Hospital.   Without Ronald McDonald House Charities we would not have been able to spend the time that we did our son during his hardest days.

We will forever hold a place in our hearts for the Ronald McDonald House Charities of Rochester. Whenever we have the time to help out in any way we do because we know how important the house is to many families. With every donation we are able to make we honor our Sweet Angel Baby Tucker.