BENEFITING: Children's Hospital of Pittsburgh Foundation
ORGANIZER: Children's Hospital of Pittsburgh Foundation
Although I have run the Pittsburgh Marathon several times before, last year was the first year I ran for the Heart Institute. With the help of my friends and family, Robby and I raised just over $1200. This year I decided to set our goal higher-- $2500.
Many of you have heard my condensed version of why Rob and I are so committed to the Heart Institue at Children's. I thought I would share some more details about Robby and our experience at Children's this time to help you understand how grateful we are for the Children's cardiologists, nurses and staff who saved Robby's life when he was born.
The story starts almost 12 years ago in January 2001 when Rob and I went for a second sonogram. Almost as soon as the tech began to see the image of our baby on the screen, we knew something was wrong. Over the course of the next few hours, we would be told that Robby's heart was not developing correctly and without surgery within a few days of his birth, he would not live. While Robby was invitro, he was fine because the heart invitro pumps blood differently than it does after a baby is born. Once he would be born, the artery that was taking blood from his heart to his lungs would close and the blood would need to go through his aorta which in Robby's case was completely blocked.
About a month later, we went back for a follow up echocardiogram and we met with Dr. Fred Sherman. Dr. Sherman, who is still Robby's cardiologist today, spent a good deal of time drawing diagrams for us and reassuring us that Robby's heart defects could be fixed. Dr. Sherman arranged for us to meet with the neonatologists at Magee and to tour the neonatal unit at Magee. He explaned what would happen when Robby was born and reassured us that we would have time with him before he would be moved to Magee's neonatal unit and then to Children's. Overall he gave us the reassurance we needed to get through the next few months.
On Good Friday, April 13, I went into labor and Rob and I went to Magee Women's Hospital. The next morning at 7:40am Robby was born into to a room full of doctors and nurses. Completely unrelated to his heart defects, his right lung collopsed during birth and the neonatologists had to take him immediately away.
At Magee at the time, you could not see your child in the neonatal intensive care unit (NICU) if they were doing a procedure on another child or rounding so we were not able to see Robby until 2:30 in the afternoon. At that time, he had a chest tube in, IVs and had a dome on his head that was providing oxygen.
Robby struggled the first few days of his life and it became clear he would need his surgery sooner rather than later. So on Monday, two days after his birth he was taken by ambulance to Children's which at the time was in Oakland. We were happy to be moved as we knew when we got to Children's we would be able to be with him almost all the time. Children's NICU did not have the same restrictions on visiting that Magee's NICU had. Before we had even made it to Children's to see Robby, we got a call from a woman at our church to say that her son, Bob English, was doing his pediatric cardiology fellowship at Children's and through his parents had learned that Robby was going to be a patient. I will always remember that Dr. English waited at the hospital for Rob and I to arrive to talk to us even though he was coming off of some ridulously long shift at the hospital and had newborn twins of his own at home. Dr. English's kindness and compassion was common to all the cardiologist who took care of Robby at Children's.
Robby also had wonderful, caring nurses. The night before his surgery, we were talking to the nurse and told her we had not yet been able to hold Robby. She immediate began to move things around and was able to lift Robby with all his wires and cables into my arms and then into Rob's. He was four days old when we first held him.
Robby had his surgery the next morning and all had gone well. Dr. Pigula, who has since moved on, did the surgery. I will always be amazed about how a man with such large hands could work on such a small baby.
After the surgery, Robby was moved to the Pediatric Intensive Care Unit (PICU). Like the NICU he was in a large room with lots of other children. There were teenagers and other young children. Some were awaiting transplants, some had been in automobile accidents or other sorts of accidents. Like the NICU, there was little privacy and to spend time with your child you had to sit or stand in the small area next to his bed.
The day after his surgery, Robby came off the ventilator and we were able to try to feed him. We had another wonderful nurse who was from Cranberry and had 3 children of her own at home. When at 7pm, Robby still would not drink the milk from the bottle, she assured us she would keep trying while we went to dinner. There was two hours a day when you could not stay with your child in the NICU and PICU and those hours were during the shift changes at 7am and 7pm. When we came back from dinner, Robby was back on the ventilator. Our nurse had stayed on to make sure we understood what happened and to reassure us. Again she did this even through she should have been done for the day and on her way home to her family. Robby's left lung had collapsed again and his chest tube was back in.
The next few days were the worst for us. Robby was not doing well and the doctors told us they thought they would need to go back in to fix one of the other defects which they had hoped could wait until he was older. Amazing the day after they told us this, Robby improved. He was taken off the ventilator and later that day he began to take a bottle.
Four days later, Rob and I brought Robby home to our townhouse in Seven Fields and took him for his first walk outside-- 15 days after he was born.
When he was three, he had open heart surgery to fix two more of his defects when we were in Atlanta. In Atlanta, they had a dedicated Cardiac Institive Care Unit (CICU). But much like Children's in Oakland, you were in a large room with a 20-30 patients and no privacy. Doctors and nurses in Atlanta were as kind and nice as here but we did not need the same emotional support that we had needed in Pittsburgh. We understood what we were going to go through. Robby did so well with that surgery that amazingly was home within 5 days.
Let me end by telling you what would be different if Robby was born today. Today at Children's they have a dedicated Cardiac Intensive Care Unit (CICU) which is only one of two in the entire state. The CICU has private rooms. The CICU nurses only work with cardiology patients. We would be been able to stay in the room with him. There has been no change in the dedication of the doctors and nurses but the technology is advancing quickly and this is allowing more and more children born with congential heart defects to live. A reflection of this is that last year, Children's established an Adult Congential Heart Defect Center which is headed up by Dr. Cook. Children that 10 or 20 years ago would not have lived are doing so because of the treatment available at Children's.
I hope that you will help me raise funds to help the Heart Institute continue its mission to save lives and allow children with congential heart defects to grow up and have lives no different than any other child.
Robby will turn 12 in April. His first love is basketball but he also likes running and golf. He is a 6th grader at Ingomar Middle School and I would guess none of his friends know he has had two heart surgeries. Aside from the physical scars, he is a typical preteen boy and Rob and I are so happy about that. So far he has been able to do everything and anything he wants to do. We have Dr. Sherman, Dr. Pigula, Dr. English and the other wonderful doctors and nurses at Children's to thank for this.
Please help me to say thank you to Children's Heart Institute by making a donation.