My name is Mitchell, and my fiancé is Juliana. During our 20 week ultrasound check in, we received news no parent wants to hear. As we watched in awe of the ultrasound, seeing our daughter move around. We were so excited. Unknown to us, the tech repeatedly went over the heart, checking it at every angle, confirming what she was seeing. Then she said she was done and left. Shortly after, the doctor entered the room and told us they found an anomaly in her heart. This is when we found out our daughter had HLHS, Hypoplastic left heart syndrome. This is a defect in the heart where her left side did not develop correctly. She would need a total of 3 surgeries at least to correct it. She would never be free of it, but the surgeries would help her live as close to a normal life as possible.
Afterwards, we sat in the truck, telling our parents through our tears, telling them the bad news. Over the next few months leading to her birth, we googled everything about the heart defect. We joined groups on Facebook, talked to social workers and cardiologist. We would carry a binder full of research whenever we went to an appointment so we had everything at hand. That binder only grew bigger as time went on.
Before little Ellie Marie was born, they told she may need support breathing, among other things until her first surgery. When she was born, on June 3rd, 2022 at 1:37am, squirming and crying, we both cried because it meant she was breathing. She weighed 6.52 lbs. For her next 5 days, we watched her breathing get faster and faster as she struggled to get enough oxygen. Her weight continued to decline and her heartrate would reach the 180s, sometimes hitting 200. On June 8th, she had open heart surgery.
She came back to the room with a ventilator, chest tubes, and IVs filling the room. Her skin was no longer pink but a sickly grey, her chest, filled with tubes poking out and draining fluids from her little body into bags hanging from the bed. Nurses and doctors were in and out, checking vitals, adjusting machines, making sure she wasn’t bleeding out more then she already was. When the amount of blood draining from her open chest didn’t slow, they brought her back into surgery, telling us they found a leak where they performed surgery on the heart and would need to fix it so she didn’t bleed out.
Over the next month, we lived in the hospital and still do, taking turns getting food, to shower, to sleep. Too scared to walk away in case something happened. It always seemed we would take 2 steps forward, 1 step back in recovery. She would start gaining weight, and then they would find something that would make us halt feeding her for a whole week. Blood clot, Pneumatosis, blood in her poop. We stare at her vitals all day, watching them get better. And then she would cry or get mad, or even just turn her head, and her vitals will drop, alarms will sound, nurses would come in and check on her, moving sensors, increasing and decreasing the numerous medications. A doctor once told us it was like trial and error figuring out how much of something to give her, what she needed and didn’t need.
It’s now June 10th, and we are still weeks away from being able to go home with Ellie. We would get maybe 2 months, before her 2nd open heart surgery. Juliana stays at the hospital 24/7, watching over Ellie while I go to work, trying to make enough for both of us, and paying for our bills for the house we haven’t slept in for over a month. It’s tiring, mind-taxing and we’re both exhausted, but we won’t go home until Ellie does too.