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Challenge: NICU Parenting

Lessons learned from a year in the NICU/PICU

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It was almost two years ago that we began our wild ride with our second child, Asher. We were considered a “high risk” pregnancy with our firstborn son Colton, but thanks in part to great prenatal care; he was born healthy at 40 weeks, weighing 7 pounds. We expected nothing less when we were having a second son. But once pregnant, we found there were additional factors that put this pregnancy at “high risk” and Bre’s water broke at 23 weeks.

She was on hospital bed-rest for five weeks until our son Asher decided he couldn’t wait and was born on July 18, 2016 at 29 weeks weighing a tiny 2lbs 6oz. When he was born he wasn’t breathing and it was the scariest day up to that point in our lives. The medical team put in a breathing tube and had him on a ventilator they use for the most critical babies. They were trying everything to keep him alive but he wasn’t responding to any of the interventions. About 8 hours after he was born, his nurse said all of sudden prayers were answered and his body started functioning… still in serious condition.
Had it not been for the aggressive treatments at the hospital and Asher arrived at 23 weeks he would have been born less than a pound and with close-to-no chance of survival. He now had a fighting chance.
Several of his neonatologists and pulmonologists described Asher’s chronic lung disease as one of the worst they had ever seen…his lungs were terribly underdeveloped. It was 7 months before Asher was even considered stable enough to have his own room in the NICU. He was transferred from the NICU to the PICU at 8 months of age – one of the longest stays of any preemie since Banner Children’s NICU opened decades ago. He spent a month in the PICU before he went home for the first time after 270 days. He’s had close to one hundred X-rays, 13 blood transfusions, 13 ultrasounds, 12 surgeries, 4 bacterial infections, 3 rounds of steroids, 3 times intubated, 2 CT scans, one MRI, more than a dozen specialists caring for him and another dozen or so very scary days.
A couple months after his first hospital release, family, friends and co-workers donated gifts to make Asher’s first birthday memorable for him and many other NICU and PICU families through a gift drive we hosted. We delivered close to 600 gifts to Cardon Children’s the week of Asher’s birthday.
The following week we rushed Asher to the hospital with a very unexpected and life threatening twisted bowel. We had several close calls with Asher in the past but were so hopeful. This time hearing the surgeon tell us there was a 50 percent chance our child wouldn’t survive was gut-wrenching. We tried to stay positive…however we couldn’t help but think how we would tell our 2-and-a-half year old that his brother wasn’t coming home from the hospital this time. He thankfully came home on August 28 for hopefully the final time.
Asher has faced many of the hurdles common to preemies: lack of oxygen at birth, a brain bleed, a heart valve issue, clots in his heart and stomach, bacterial infections, anemia, tracheal malasia, bronchial malasia, vision problems, kidney function issues, to name a few. Thanks to the March of Dimes' research on health issues that threaten our children, these health concerns were not as severe as they could have been, and once Asher is able to get his trach tube out in a couple years – we expect him to be as healthy as the average 3 year old.
“The NICU is all of the real world condensed into one small microcosm – babies and families, life and death, rich and poor, celebrations and grief, good and bad, joy and sadness. Nobody ever wants to have their baby there but all are grateful for the chance at life the NICU offers.”
Our faith, family, friends and newfound friends Banner Children’s Medical Center helped us through the difficult days when we worried we may be planning our baby son’s funeral. During our YEAR hospital stay, we met a lot of families whose children were born too soon and never expected to live, but they did. We met mothers who never thought they’d make it to 34 weeks with their child and they did…with the help of March of Dimes.
We often think about how far medical advancements have come in the last decade, and witnessed it firsthand in the NICU. We are incredible grateful for the tireless work of the March of Dimes and the impact they have on millions of families across the country...including our little family from the Valley.

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