Imagine this. Your baby is in the hospital, hooked up to various monitors. It’s 3 in the morning and alarms from those monitors are blaring. Lights are flashing. You’re watching numbers jump all over the place, and you aren’t sure exactly what they mean. Nurses rush to your baby’s bassinet and you’re asked to step away.
This is a regular occurrence in a NICU or pediatric ICU.
We are fortunate that Braveheart spent only 20 days in the NICU, but I have to tell you, it felt like an eternity. The night I described was day 3 of Braveheart’s life. The night that changed everything. It was the night the doctors decided that he needed surgery ASAP.
Having been diagnosed with Hypoplastic Left Heart Syndrome, an Atrial Septal Defect and a Coarctation of the heart, he needed repairs. His condition meant that the left side of his heart was smaller than the right, there was a hole between the upper 2 chambers, and the arch of his aorta was narrow.
On Friday, July 14th – Braveheart was 5 days old – he was scheduled for his first open heart surgery. He was first on the schedule and we were told they would take him away around 7am and that we should show up at 6 so we could see him before he was intubated.
Around 5 in the morning of Surgery Day, my hubby, mother and I rushed from New Jersey to New York, filled with conflicting feelings of excitement (to see our baby again) and apprehension for what he was about to endure. We eagerly entered the NICU, sanitized our hands at the door, and as we approached his crib, we saw two respiratory therapists securing his ventilator.
I’ll tell you, my heart dropped down to my feet. They’d already intubated him. Meaning he was already sedated and he wouldn’t even get to see us before he went into surgery. It was at that moment I was filled with fear and anger. I was angry at the staff for telling us we’d have time to see him, and I was afraid that if it was the last time I could see my baby alive, he wouldn’t even have gotten the chance to see us one last time.
Despite everything, we put our negative feelings aside and approached his bedside. We said prayers and snuck in a moment to rub some anointed oil on his forehead. Then his entire “bed” was transported to the operating floor.
For the entire transition, Hubby and I were by his side. We got into the elevator with the staff, where one of the nurses who we’d never met said to our sedated baby “I’ll see you later, [Braveheart]!” Words are a powerful thing, because, despite how simple the nurse’s words were, it gave us a sense of relief. We were not saying goodbye to our 5-day-old, but see you later.
Outside the OR, we spoke with the anesthesiologist. He was kind, calm, and confident. He told Hubby to give Braveheart “a firm talking to” and told me to give Braveheart a kiss. Then we were escorted back to the NICU by two nurses who were to be with him post-op. To this day, we are grateful to those two nurses, Kathy and Lizzy, because they made the experience so much more bearable and they showed that Braveheart’s case was more than just a job for them.
As we got into the waiting room, his surgeon left the OR and came to speak to us briefly. He reiterated the plan of action and said he just wanted to see/speak to us before he… well, sliced our son open. Waiting for Braveheart’s surgery to be over was absolutely terrifying. But we received updates from his nurses.
- He was off bypass
- He was being closed up
- He was brought back to the NICU
- He was ready for visitors
We were warned of what Bravehart would look like post-op, but nothing can prepare you for the actual image of your child lying there, motionless and with what seemed to be a million different tubes and wires everywhere.
(Disclaimer: post-op pictures below)
From that point on, the road to recovery was a bumpy one, but he came out of it like a champ. From surgery he’d faced a few complications, the foremost ones being . 1) Chylothorax, 2) Pneumothorax, and 3) a paralyzed left vocal cord. [You can read an update on that topic here]
As you can imagine, it was absolutely scary. The first 24 hours were the most crucial, and also the most unstable. I can’t even begin to tell you how many times I wondered how much more his little body could handle. But he definitely proved to be a warrior.
Today he is making us proud every day!
To be continued.
Thank you for reading!