'My baby is an open heart warrior'

April 9, 2019

At Julian’s six month well visit, we had a bunch of normal questions: weight gain, nursing, sleep schedule…until our pediatrician heard a heart murmur.

 

That’s when the tone of the visit changed.

He explained that he heard a harsh sound of blood flow and it could be normal or abnormal, but the next step would be an echocardiogram for an accurate diagnosis. We called immediately and scheduled the echo for just after Christmas at Buffalo's Oishei Children’s Hospital. The echo itself took roughly an hour to capture over 100 images of his heart. It was that day that we met Julian’s cardiologist, Dr. Pratt. She met with us and reviewed the echo right then and there. She drew diagrams to help explain and was amazing at making the information understandable. She explained that Julian had a diagnosis of Atrioventricular Septal Defect with valve regurgitation. This meant the chambers of his hearts did not form properly leaving large holes in both the upper and lower chambers. A defect that should have been caught in utero, but thankfully was caught present day.

 

She very honestly told us - it will require open heart surgery to correct.

 

We left that appointment with our minds swirling, trying to make sense of everything. Endlesss amounts of research followed along with many more appointments, both with our pediatrician and cardiologist. Julian was also not gaining weight due to his heart’s inefficiency. It was explained that his body was running a marathon every day just to keep up. That issue became the daily battle of trying to track all the ounces he consumed over the day, as well as always pushing for more. The heart defect was the background worry that Andy and I mostly kept to ourselves and a few close family and friends. It consumed us with worry and any time I shared Julian’s struggles with someone I would immediately choke up. It was so hard to talk about, mostly because the thought of handing my baby boy over to a surgeon to operate on his heart was absolutely terrifying.

 

After battling tons of sickness (colds, stomach virus, & RSV) over the winter months, we got the go ahead to schedule the surgery and do our best to keep him healthy. Buffalo does not have a pediatric heart surgeon, therefore we were referred to Golisano Children’s Hospital in Rochester. We were told repeatedly - Dr. Alfieris is the best of the best, but this didn’t lessen the worry either. Julian had been so unbelievably calm and sweet over the pre-operative testing and the morning of, despite having to fast prior to surgery. It was as if he knew what was coming and he was already beginning to create his hospital fan club with his peaceful nature.

 

We finally met Dr. Alfieris the morning of Julian’s surgery. His presence was powerful. He shook our hands and spoke confidently of his abilities to fix Julian’s heart. He was also honest about the risks that come with open heart surgery. We were mostly strong and held ourselves together that morning, but when the anesthesiologist carried him away we lost it. It’s so hard to let go and give up your control when all you know is to be your baby’s caregiver.

 

The surgery was expected to take four to five hours, and we received text message updates with the surgery progress. It was absolutely nauseating to sit and wait to hear how things had gone. However, as Dr. Alfieris walked in to the waiting room with a smile and thumbs up just three hours later - it was a complete sense of JOY. We hugged him and he told us it went ‘perfectly’. The wordperfect never had a greater meaning until THAT exact moment.

 

We had to wait about another hour before we could see him in the Pediatric Cardiac Care Center. When we were brought back to see him he was sedated, intubated, had multiple IVs and monitors, a large bandage running from the top of his sternum to his belly. It was a sight that you try to prepare yourself for, but never really can until it’s your little one. His nursing team was quick to introduce themselves and explain everything they were administering and monitoring. They were so wonderful. Every member of the medical team in the PCCC felt like a part of our family for our brief eight-day stay. We looked forward to seeing previous nurses at the next shift change and were thankful to be included in the rounds with our medical team.

They checked on Julian (and us) and called him their little rockstar, even when they weren’t assigned to him. We also felt comfort during that time in our stay at the Ronald McDonald House. It was located within the main building of Strong hospital, which is attached to Golisano. One of us would stay bedside and one would venture over to the Ronald McDonald House for a few hours of sleep. I have told people that it was the amenities of a hotel, but with the comfort of home away from home. Friendly faces, snacks, meals, hot coffee, and laundry all helped get us get through that long week with the help of their accommodations.

 

We also were touched by our family, friends, neighbors, and co-workers, who came together to support us in a way that touched our family’s heart. I guess you don’t realize how much of a community of love surrounds you until you really need it!

 

We appreciate guest blogger, Kristy Young sharing her story with Hope Rises to bring more awareness about life-threatening heart conditions: Knowledge is power. 

 

Share on Facebook
Share on Twitter
Please reload

Featured Posts

I'm busy working on my blog posts. Watch this space!

Please reload

Recent Posts
Please reload

Archive
Please reload

Search By Tags
Please reload

Follow Us
  • Facebook Page for Hope Rises News
  • YouTube Social  Icon