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The Power of Positivity: Walking Alongside My Micro-Preemie

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I awoke into a nightmare. Ideally, and if given the option, I’d invariably choose to have it the other way around. Although subjectively unpleasant, I can at least grasp the concept of allowing my brain to play out its delusions of a menacing haunting or unnerving phobia while being safely tucked away in the realm of unconsciousness. Yet regardless of my desires, it was quickly becoming apparent that this was not going to be how my night would play out — the dreadful dream that I hoped I had arrived in was rapidly morphing into a full-blown reality.

The lone light in the darkness emanated from our bathroom. It bounced off the walls and pierced my retinas. The exclusive soundtrack of the night was provided by my wife who composed a symphony of cries and sobs intertwined with panic-stricken screams. Blood and tears painted the stage and completed the scene as the smell of anguish solemnly lingered in the air. I knew what was happening; my awareness was heightened and crystal clear. Our biggest fears were coming to fruition. Still, I could not convince myself it was real. There was no way this could be happening to us.

My daughter made her dramatic arrival into the world a few days later, but not before several long and stressful days in the hospital; not before various difficult discussions with doctors and other medical professionals. On that fateful June night, the placenta had ruptured which set this whole chain of events into motion. We were only 22-weeks along in the pregnancy. There were statistics and numbers thrown at us. There was an aura of negativity attempting to overtake our whole vibe —  it was insidious. The consensus was that of no hope for viability whatsoever if we could not make it to 23-weeks before giving birth, and even then, the outlook appeared grim. It was conveyed to us that even if our baby survived the rigors of birth at such a fragile stage, the likelihood of her experiencing a rather poor quality of life was imminent. There were choices to be made; hard choices; choices no person should ever be tasked with making, let alone about the fate of a child; their child. Yet no matter how difficult the circumstances, we held up our heads, stayed optimistic, and did everything within our control to provide and maintain an atmosphere of positivity to shine through those dark, stormy clouds.

I paced nervously outside the operating room. I was not allowed inside due to the serious nature of the procedure. My wife had held our daughter in as long as she possibly could. We had narrowly passed the 23-week milestone and it was determined that the best course of action was to undergo an emergency C – section. The lives of both my wife and baby girl were now out of my hands and an overwhelming feeling of helplessness washed over me. I had to muster up some faith; faith that things would be as they were meant to be; I had to let go — and after a little back and forth battle in my head, I did so to the best of my ability.

After what felt like an eternity, the doors to the operating room dramatically swung open and I laid eyes on my baby girl. Time stood still. She weighed in at a skosh over one pound and sprawled out from head to toe at only 12 inches long. She lay motionless inside a plastic bag — it was the only way to ensure her tiny body’s temperature would maintain itself. She had tubes shoved down her throat because she could not breathe on her own. There were cables and monitors and wires; there was medical jargon and incessant beeping and soul-shattering alarms. It was a blur — surreal. I got one good gaze at her, snapped a quick photo, and watched her fade into the distance as she was urgently whisked away in hopes to attain stability. She was out of sight just as quickly as she burst onto the scene and I stood there all alone once more. They were the most terrifyingly chaotic and beautiful moments of my life.

It’s unnerving to think back on how my daughter’s health and well-being fluctuated from minute to minute in her fragile, little world. Reality had set in rather quickly for us and the weight of it all was overwhelmingly daunting. We never quite knew what the events of any given day would consist of. Every time we walked through the doors of the hospital it was a roll of the dice and as if that alone was not stressful enough, we were lamentably amidst the ever growing threat of the coronavirus pandemic. We had an extremely premature baby with the most fragile set of lungs born into a world where a novel, deadly lung disease had taken us all hostage. It was a recipe for disaster and we became no strangers to those utterly disastrous days.

I recall one particular day early on most clearly of all. Shamefully and regrettably, I must admit, it was the only moment in the 133 day affair that I had marginally lost my faith. It had appeared as if we were gearing up for a decent day when suddenly the monitors in the room began frantically beeping and flashing uncontrollably. This was not uncommon, but slowly the atmosphere in the room started to become unsettled — we all felt it. The room swiftly filled with doctors and nurses. They were taking life-saving action, but conditions were not improving. They tried this and tried that, but nothing seemed to help. I instinctively knew her fight had now reached nothing less than that of a primal desire to survive — and she was nothing if not a survivor.

We had started that morning with a decent report from the doctor’s on the status of her still-developing lungs — we were allegedly moving in the right direction. But suddenly and without a fraction of warning, both sides had given way to collapse and a team of medical professionals were manually pumping oxygen into her deflated lungs as a last ditch effort to keep the shade of purple she was rapidly turning from getting any darker. We were scared. We saw the same fear overcome her tiny little face for the first time … it came to life in her eyes and shot out in a burst of tiny daggers through our souls leaving permanent scars. The staff, however, was calm, cool, and collected. They carried out their mission without missing a beat.

I just stood in the background with an awful case of conscious paralysis. I paced the hallway when it got to be too much. I could feel her struggle. I could not keep my eyes from periodically scanning over to the ever unstable and plummeting numbers displayed on those screens above her. At one point they recorded a 19 percent blood oxygen level. I could not have felt more helpless and lost; wondering how we all got here. Questioning why this is happening to us. But she continued to fight and although I was amidst my own crisis of faith, we all continued to believe in her strength. I just knew we had to make it through that day; we had to get through this journey together. Finally, after seemingly exhaustless hours of uncertainty, she started to pull through and we all finally took that deep and sought after sigh of relief.

So despite days like these, we carried on. By day we sat by her side; by night we sat home and waited for the sun to re-emerge from its slumber. We tried to tame our racing thoughts and did our best to sleep. We awoke in the middle of the night to nauseating anxiety. Our hearts skipped a beat every time the phone rang. We physically lost touch with our support system. Due to the coronavirus pandemic and its complex uncertainties, we had no choice but to isolate ourselves from family and friends. Our village had been forcibly transformed into a virtual reality and her nurses became our stand-in family.

Throughout the entire ordeal, we became the opposition to a plethora of immense challenges. To kick things off, her lungs were severely under-developed and she was essentially diagnosed with chronic lung disease before even exiting the womb. Next, we faced a condition called Patent Ductus Arteriosus (PDA). This is basically an opening between two blood vessels in the heart. In utero, it is a normal part of fetal blood flow and it should naturally close after birth. In my daughter’s case, it did not due to the severe nature of her prematurity. The main concern of this opening was the passage of too much blood into her lungs which caused excess fluid build up. As one could imagine, that made it much more difficult for my baby girl to breathe without becoming overly exhausted, even with the support of a ventilator.

We were up against a condition known as Retinopathy of Prematurity which presented an immediate threat of blindness. She required a specialized laser surgery which involved a transfer to a new hospital. We uprooted our lives for over two weeks and accompanied her on the pilgrimage to an entirely foreign environment for the procedure. We overcame the period of time her kidneys shut down and the only hope for recovery was through a rigid steroid regimen that threw her blood pressure completely out of whack. She powered through brain bleeds which had the ability to cause long-term neurological damage.

This list goes on. So did we. No matter how bad the news or dire the situation, we stopped any negative energy from coming through the door of her intensive care unit. We did not allow discussions with the doctors to occur anywhere near her, unless it was of a positive nature. We left our fears and doubts and uncertainties in the parking lot. We read to her. We talked to her. We cheered her on. We laughed and joked. We celebrated the milestones. We believed in the power of positivity. We embodied that whole vibe in hopes to invigorate her courageous little spirit. I genuinely believe it made a world of difference.

After 133 days in intensive care and after beginning her life in such an intense battle for survival, we finally reached the coveted day of discharge. My daughter had defied the odds and earned herself the ability to come home on only a few medications and an oxygen concentrator. The oxygen was relatively quickly discontinued after a couple months and she now breathes completely on her own. She is also entirely medication free as of recently and thrives as a strong and healthy 1-year-old; we celebrated her first birthday surrounded by all our family and friends at a local park. We could not be more proud of her accomplishments.

She fought and continues to fight for this beautiful experience of life – preordained to pursue and fulfill her dreams. She inspires me to wake up and fight alongside her. She teaches me the authentic meaning of courage. She embodies bravery. She effectuates a fiery brightness to the coldest, darkest aspects of my world. She makes me better; complete. She is my daughter. She is mighty.

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Photo submitted by contributor.

Originally published: September 27, 2021
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