“Heart Failure”; two words no mother ever wants to hear. We knew McKenzie would eventually have heart surgery when she was strong enough around four to six months; we also knew we would need to work hard on ensuring she stayed healthy and gained weight in the meantime. Two weeks after she came home she started to sound congested, so I took her to the hospital to be safe. The doctor checked McKenzie and documented all her health conditions, she then turned to me and explained color of her skin, low lungs, and low weight. I stood by McKenzie’s bedside as the doctor finished explaining her findings, I expected a list of things to do and a check out to follow.
I didn’t expect the doctor to turn and say she was sending us back to Orlando – because McKenzie was in the beginning stages of heart failure. I felt my heart drop, I called Nikki and she came as quickly from work as she could. As Nikki rushed home to pack a bag, McKenzie and I were taken by ambulance to Arnold Palmer. A million things raced through my head during that ride; having a child with a life-threatening condition changes you.
The doctors at Arnold Palmer put McKenzie on Lasix, diuretic to flush her lungs. I stood dumbfounded as they explained the processes to come. I couldn’t believe after just two weeks from leaving the last round of being in the NICU that we were back. We expected complications, we expected hospital stays and knew it wouldn’t be easy but having our baby back in the ICU so soon was like a slap in the face.
The stress and exhaustion causes emotional ups and downs. Sleeping in hospital chairs, skipping meals and showers, crying from fear and exhaustion, constantly on the verge of losing our mind. The doctors decided since McKenzie is unable to gain weight due to her heart condition, she will have a tube placed in her stomach until she is roughly a year old. While we know and understand this will help her gain weight and strength; at what point are we supposed to accept that yet another aspect of the life we imagined for her has changed.
As I sit in another small room cramped with hospital equipment, I listen to the cries of other children, the constant beeping of multiple machines throughout the hall, the constant beeping of machines throughout our daughter’s room. I can’t help but become discourage and disconnected as I watch the doctors and nurses decide what’s best for our daughter; as I sit helplessly asking questions and voicing concerns.
Today, I relived the pain of saying goodbye to my wife as she had to return to work. Today, I was reminded of the struggle to be a good mom while my heart was breaking. I watched as she walked away with tears in her eyes, I felt my heart in my throat as I continued to talk with nurses and care for McKenzie. Once the room was quiet again, I broke. The truth is; being a mom teaches you strengths you didn’t know you had and fears you didn’t know existed. Being a wife and a mom teaches you there is only one way to get through; keep going.
While we are still in the cardiovascular ICU at Arnold Palmer, McKenzie’s doctors have created a plan to get her where she needs to be. McKenzie continues to be strong and her doctors continue to make moves forward with her health; Nikki and I will continue to survive through what feels like the worst possible time of our lives today and what will be a distant memory of life in the ICU; another day.