Rj's Road to Recovery
Donation protected
On December 19th, 2016 our lives were turned upside down. The doctors were giving me a repeat ultrasound because they were unable to see certain structures of the babies heart. At 25wks it was confirmed, our baby boy had a Severe Congenital Heart Defect called Hypoplastic Left Heart Syndrome. We were basically given two options; deliver him at full term and do palliative care- make him comfortable until he passes OR we fight. We chose to fight.. we wouldn't have been able to live with ourselves if we didn't try. The doctors said he was growing great and looked so healthy otherwise, so we (and the doctors) felt he had a great fighting chance. But by choosing this road our little boy is going to need a three stage reconstructive heart surgery, lifetime of medications, hospital stays, doctor visits and possibly down the road a heart transplant.
We decided to deliver and have his surgeries done at The Children's Hospital of Philadelphia (CHOP). They have one of the best cardiac centers in the nation. His first surgery would be during the first week of life, second around 4-6mths old, then his third around 2yrs old.
On March 28th, 2017 I delivered a beautiful 7lb 5oz little boy who looked pink and absolutely perfect. But at just 2 days old he needed to undergo his first open heart surgery.
At about 8am on March 30th, we took our first agonizing walk with the doctors to bring Rj in for surgery. We smothered him in kisses and told him we would "See him later" (we never say bye) as they took him away. The next 6hrs were the longest hours of our life. Finally we got the call he was out of surgery and we would be able to see him. Unfortunately, Rj wasn't in the clear just yet, even though his surgery went great they couldn't understand why his blood pressure wouldn't stabilize. They took him back to the OR and reopened his chest cavity. For 3 hours they watched him and waited for something to change, ultimately they decided to leave his chest open.
Rj had a lot of ups and downs over the next few days. Then, on April 3rd they felt comfortable enough to close his chest! Rj excelled very quickly over the following week, in fact they told us we could bring him home April 13th! We were so excited, for the first time since he was born we'd be able to go home and have all our babies together, and even better just in time for Easter!
On April 13th, we got our car all set up to bring him home, went to the hospital and when we walked in Rj was on oxygen again... We paged the nurse and found out over the past hour his oxygen levels dropped into the 60's and that we would not be bringing him home.
Although we were devastated by the news, we were also thankful this happened while he was still in the hospital rather then when we got home. During the period between the first and second surgery they have found a high mortality rate. Living three hours from the hospital has put us in a difficult situation if something were to go wrong.
We had to relocate to Philadelphia on March 26th and we are currently still here. It has been emotionally and financially difficult for us. We had to leave our other two sons back at home with my parents and at this point we are struggling financially. Please help us continue to stay close to him, whether it's a donation or simply sharing our story. I wish I could say that this is almost over but it is only the beginning. We will be using the money raised for this stay and future ones. Thank you and we truly appreciate your help. ❤




We decided to deliver and have his surgeries done at The Children's Hospital of Philadelphia (CHOP). They have one of the best cardiac centers in the nation. His first surgery would be during the first week of life, second around 4-6mths old, then his third around 2yrs old.
On March 28th, 2017 I delivered a beautiful 7lb 5oz little boy who looked pink and absolutely perfect. But at just 2 days old he needed to undergo his first open heart surgery.
At about 8am on March 30th, we took our first agonizing walk with the doctors to bring Rj in for surgery. We smothered him in kisses and told him we would "See him later" (we never say bye) as they took him away. The next 6hrs were the longest hours of our life. Finally we got the call he was out of surgery and we would be able to see him. Unfortunately, Rj wasn't in the clear just yet, even though his surgery went great they couldn't understand why his blood pressure wouldn't stabilize. They took him back to the OR and reopened his chest cavity. For 3 hours they watched him and waited for something to change, ultimately they decided to leave his chest open.
Rj had a lot of ups and downs over the next few days. Then, on April 3rd they felt comfortable enough to close his chest! Rj excelled very quickly over the following week, in fact they told us we could bring him home April 13th! We were so excited, for the first time since he was born we'd be able to go home and have all our babies together, and even better just in time for Easter!
On April 13th, we got our car all set up to bring him home, went to the hospital and when we walked in Rj was on oxygen again... We paged the nurse and found out over the past hour his oxygen levels dropped into the 60's and that we would not be bringing him home.
Although we were devastated by the news, we were also thankful this happened while he was still in the hospital rather then when we got home. During the period between the first and second surgery they have found a high mortality rate. Living three hours from the hospital has put us in a difficult situation if something were to go wrong.
We had to relocate to Philadelphia on March 26th and we are currently still here. It has been emotionally and financially difficult for us. We had to leave our other two sons back at home with my parents and at this point we are struggling financially. Please help us continue to stay close to him, whether it's a donation or simply sharing our story. I wish I could say that this is almost over but it is only the beginning. We will be using the money raised for this stay and future ones. Thank you and we truly appreciate your help. ❤
Organiser
Jackie DiPillo
Organiser
Delaware Township, PA