Our Heart Baby

“On July 12, 2022, our sweet boy Luca was born looking healthy at 7lbs 7oz. The first 12hrs were exhausting but also very exciting to hold our warm little baby. One thing I noticed as his mom, was that his scream appeared quite severe, so much so he would turn purple when he cried. I mentioned it to the nurse and the medical team tested his blood sugars. With a number meeting NICU standards, our sweet boy was off to NICU after spending about 18hrs with me in my postpartum room. I was heartbroken, but the NICU team assured us that with a strict feeding regime every 3hrs, our son would be discharged when his blood sugar levels were good. We spent every day by his side, working on both breastfeeding and bottle feeding. After 4 days, we were told to bring in our car seat the next day. We couldn't believe we'd finally be bringing our baby home! On Saturday morning, we walked in with our car seat, and his nurse looked at us surprised we were bringing a car seat, so I said "we were told he could come home today", to which she replied "oh, he's not going home, he was put on oxygen overnight!" WHAT? We were overwhelmed with a sense of shock, anger, and pain. Why had no one called us overnight to tell us his status had changed? He hadn't needed oxygen during his entire NICU stay, what changed? Convinced the monitors were wrong, we didn't leave his side, and slept in a tiny room next to him that night. By Monday, a different neonatologist was on shift and she told us she couldn't feel Luca's femoral pulse. She made multiple calls to other neonatologists and got Luca a spot at a level 3 NICU (he had been at a level 2 since day 1). The next morning, we were off in an ambulance with a transport team to move our son to a NICU that we would later find out specialized in cardiac cases. Shortly after settling into his new NICU room, a heart echo was conducted. While we tried to figure out parking permits, the neonatologist and cardiologist called us wanting to meet immediately. Back in NICU, they sat us in a vacant room and delivered the news. Our son had a coarctation of the aorta, a major congenital heart defect, which I essentially compare to a 4-lane highway reduced to 1 due to construction and expecting the flow of traffic to remain the same. His aortic arch was pinched, and his heart was working extra hard trying to pump blood to his lower body. We were told that this condition was often undetected until the baby goes into cardiac arrest at home with parents, so his initial NICU admission essentially saved his life (and ours), as the monitors caught his reduction in oxygen. 

The next morning, Luca's heart was not positively responding to the medication, therefore he was all of a sudden slotted for surgery that day. Meeting with the surgery team, we were numb, signed all the papers, and just trusted that they could save our sweet boy. I remember barely asking any questions, the diagrams seemed straight forward, and I have no medical background. They later came to get our son, and wheeled his tiny little bed out of the room. The surgeon told us "go for dinner, or go home and nap, if you stay here it will be the longest 3hrs of your life". Sleep? I thought, wow, who could sleep while their 8 day old baby is undergoing heart surgery? So we went for dinner, and cried over a glass of wine and pasta. We sat there as others around us enjoyed their meals, while we were just sitting there, mentally drained from all the tears and lack of sleep over the last week. About 2hrs after kissing our son, the surgeon called. All I remember hearing was "Luca did really well and he's expected to live the life of a normal little boy". I bawled, I couldn't breathe. We stayed in NICU another 3 weeks, as Luca slowly recovered, was tube fed, and followed by other professionals by SLPs, ENTs, and a Neurosurgeon.

At 30 days old, Luca finally came home to meet his 3 fur siblings. Luca is now almost a year old, and we still see his cardiologist every 6 months, and he'll be followed by the cardiac team for the rest of his life. Every day, we're grateful that NICU saved our beautiful little boy, and our souls.” NICU Mama, Sarah