It’s been a tumultuous journey since my little princess’s birth and her two siblings’ upbringing. The situation we found ourselves in was beyond anything I could have imagined. On Feb 1st, 2023, Nivea was born, and moments later, she was whisked away to the NICU due to her bluish complexion. I was left in a state of confusion, repeatedly asking for my baby but receiving no answers.

Later that day, I was told I could go down to the NICU to see her. I was so confused because I didn’t even know what a NICU was, then to see her in an incubator, a tube in her mouth, and her left leg shorter than her right leg (a cleft foot). Overwhelmed with questions and answers coming in all directions, I couldn’t do anything but shed tears. I held, kissed, and rocked her, setting aside my need for rest. I was in shock. Finally, I was told Nivea had a heart problem and would be transferred to Lurie Children’s Hospital. 

Day 3,  I walked into my baby’s room, and there she was, hooked on so many wires, oxygen, and a feeding tube. The following day, the doctors shared that Nivea had several congenital disabilities; trying to hold in my pain, I sat there with tears falling. As days went on, she was transferred to another floor, and the night I went home to rest, I felt something was wrong and received the dreaded call that Nivea had stopped breathing and they were trying to get a pulse. I got to the hospital as quickly as I could to see my daughter lying there, not responding. It was heartbreaking. I screamed. The doctors tried to comfort me and tell me she would be fine, and finally, by the grace of god, they got a pulse. My baby started back breathing.

It was evident that Nivea’s heart needed assistance in the form of a temporary stent to facilitate blood flow to her lungs for oxygenation. After the surgery, her oxygen levels improved, and she was discharged with a feeding tube and oxygen support. Juggling Nivea’s care and ensuring her siblings felt loved was daunting, but we managed. The support from the medical team and our unwavering resilience made it possible to navigate through the surgeries, doctor appointments, and the care of our other children despite the inadequacy of government benefits. 

In September of 2023, we learned Nivea’s stent was too small and needed an emergency cath to place a new stent to bridge her to her open heart surgery. The stent was placed, allowing her to have normal oxygen saturations. My little warrior did it.

December 8th, 2023, was the day of her big surgery; as they took her down, I prayed and prayed. Finally, hours later, they were done, and she “rocked the surgery.” I cried and hugged the team for taking care of my baby, as I knew all too well we had many future heart surgeries ahead of us.

Despite her medical challenges, Nivea is the epitome of joy. Her resilience and spirit are a testament to the power of hope. My advice to all those facing similar struggles is never to lose hope. There is always a light at the end of the tunnel. Amen.