Zariah’s story began when I went into preterm labor, due to placental abruption, on 9/9/15. At each medical facility, the providers continually stressed that Zariah was not considered viable and strongly advised against full medical intervention. After being transferred to 3 different facilities, the University of Utah Hospital was able to stop the contractions. We thought that our future only held 4 months of bed rest, but to our dismay the contractions returned a day later. Zariah entered the world at 23 weeks and 6 days, weighing 1lb 6oz. At this gestational age, we were given a 17% chance of survival. There would be a high probability of blindness, hearing loss, physical impairment, cognitive impairment, Cerebral Palsy, increased infection risk, brain bleeds, and necrotizing enterocolitis (NEC).
Our little fighter has endured and conquered many trials in the past 9 months. She developed pneumonia her second week of life, which has contributed to the severity of her Chronic Lung Disease. Due to her premature body and multiple lab tests, she has required 8 blood transfusions. She underwent open heart surgery at 3 weeks of age, and has required 2 additional surgeries. Zariah was hit with bouts of pneumonia, sepsis, other illnesses, and lung collapse as well. Unfortunately, every illness correlates to further setbacks in lung recovery. Her ventilator and oxygen needs have been a roller coaster. She has been as low as 35% inhale oxygen need and breathing on her own. Currently, she is requiring more oxygen and ventilator assisted breaths.
Throughout our 9 month journey, we have been told countless times that all medical measures are being utilized and Zariah is not going to make it, but Zariah finds a way to pull through! We are now being asked to consider how we want Zariah to pass. Some of the medical team has lost hope and want us to give up on our Zariah. What the medical team fails to remember is that they told us from the beginning that this was going to be a roller coaster. That there would be 1 step forward and 3 steps back. That with every illness, infection, or reflux Zariah’s lung would be set back and need more time to recover. With the help of the medical team, Zariah has battled the pneumonias, sepsis, and the collapsed lung. With all these insults to injury, it is no surprise that her recovery has been setback. So why are we being asked to loose hope now!? Zariah has not had any brain bleeds or necrotizing enterocolitis (NEC). She reversed the Retinopathy of Prematurity and visually tracks people and objects. Zariah has no signs of hearing loss. In fact, she is very sensitive to the sounds around her. She recognizes mommy and daddy! She even recognizes all her primary nurses! The providers have forgotten that even after several bouts of pneumonia and sepsis, Zariah bounced back! She improved to a point where she no longer needed breaths from the ventilator. She was breathing, with need of some oxygen, on her own! The providers have forgotten that even after her lung collapsed, she was able to take some of her own breaths! The providers have stated the new lung tissue can continue to grow up to age 8. With this information, it seems silly to give up now!
I, myself, have had setbacks due medical issues. Following a major injury, I had to endure several surgeries and the extensive recoveries that followed. There were moments where I endured a poor qualify of life due to poor pain management. I was in so much pain that I wanted to just give up, and just go to sleep and never wake up. The answer to my suffering was improved pain management. This moment was only a small fraction of my life. My major injury allowed me to appreciate all the tiny blessings that daily life brings! If I had given up then, I would not be living this blessed family life!
Yes, Zariah is now needing more support, but there has always been an acute reason to her increased need. I recall a time where she needed extra support, shortly after they discovered kidney stones….should we have given up then!? Can you imagine parents giving up on their child due to kidney stones!? Zariah was on a good streak; she was doing extremely well for 2 weeks. She was only needing 35% to 60% inhaled oxygen and taking some of her own breaths. I don’t know how to explain it. Call it crazy mom intuition, call it a gut feeling, but I know it is not Zariah’s time. So the go to question should not be how Zariah should pass, the question should be what is the acute issue. Turns out this time the acute issue may be blood clots!
All we want is for Zariah to thrive and have the best quality of life possible. We will do anything and everything in our power to help Zariah achieve this goal. We will never give up on our Zariah, as suggested by some providers!
289 Days at the NICU Primary Children’s Hospital Salt Lake City Utah
Zariah Donovan * Primary Children’s Hospital * Shawn Donovan * The Fight for Life