“This is how we live our lives day after day.”
(Editor’s note: we first ran this story in April, around Easter. For a Thanksgiving update from the Wolff family, head over here.)
by Jessica Wolff
Right now, I can’t turn on the television or look at my phone without seeing a story about COVID-19. The public is in a full-scale hunker down to wait out the pandemic, but this is nothing new for my husband and me- we are the parents of a micropreemie.
My daughter Lily was born at 24 weeks gestation and spent eight months in Carle’s NICU. While we have been home for just shy of one year, she still has several complications stemming from her time in the hospital- she is ventilator dependent with a tracheostomy, g-tube, and supplemental oxygen.
Her early birth did not allow for the time in-utero that she needed to build the same immunity as a full-term baby. Because she missed this critical window of development, she is immunocompromised.
From October through April each year, we retreat into isolation for Lily’s safety. A virus as simple as the common cold could be extremely dangerous for her respiratory system, even fatal.
We have only 13 approved visitors each winter- her developmental therapists, nursing support (from several of our wonderful NICU nurses), and our own parents.
We do not take her out of the house, her doctors check-in via phone, and we rely on grocery and prescription delivery. My husband naturally encounters very few people at work, but when a coworker is ill he works from home.
We spend night shift (Lily requires around-the-clock care) sanitizing all hard surfaces, doorknobs, toys, linens, and her medical equipment. To hear of the precautions suggested by the CDC makes us giggle- this is how we live our lives day after day.
However, the difference for our family is life-and-death, and we’ve walked that line far too many times already.
Just like hospital staff, we run our home-based ICU using many required medical supplies. Some are provided by our DME (durable medical equipment supply company), like suction catheters, oxygen tubing, and coban, but we are responsible for finding and purchasing many other items like hand sanitizer, medical gloves, and hospital-grade antibacterial/antiviral cleaning products.
As the nation began to panic, these items that we so desperately need in order to function on a daily basis have become scarce. While it’s appreciated that the healthy population is stocking up on cleaning supplies and preventative items, families like ours need the same supplies just to survive.
Schnucks, County Market, Target, and the like have all had bare shelves for months as local folks have hoarded more hand sanitizer and Clorox than our medically fragile family could use in a year- and believe me, we use A LOT. We have recently found ourselves trading boxes of face masks for bottles of Purell, as all of our medically fragile family friends are in the same position.
We are trying our best to plan ahead as there seems to be no end in sight, but as stores continue to quickly lose stock and people hoard items to resell at an upcharge, we have begun to scramble.
We will remain in protective isolation through this time next year as the incidence of COVID-19 is projected to run into flu season 2020/21.
While the world around us will eventually return to normal, we will still need all of the supplies and protective gear that have been so scarce.
Please, as you shop in the coming weeks, think of our family and others like us, and consider reducing the number of each item that you purchase so that we can find them too.
Our child’s life depends on it.
Jessica Wolff is a mom of twins; surviving twin Lily and her sister, affectionately known as “A”. Jessica first came to the community to attend the University of Illinois, and now spends days caring for Lily and writing full-time. She and her husband Patrick have lived in Champaign for six years. Jessica writes for several parenting publications including Motherly, Babylist, What to Expect, Her View From Home, The Mighty, and the Today Show. She would love to connect with other local families! Find her on Instagram at @lilyslittlelungs and Lily’s Little Lungs on Facebook.
(We are seeking perspectives from parents during this unique time. Feel free to reach out to us at editor@chambanamoms.com)
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