“The public is preparing to hunker down and wait out what will likely be a full-scale pandemic, but this is nothing new for my husband and me. We are the parents of a micro preemie.
My daughter Lily was born at 24 weeks gestation and spent eight months in our local 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, even fatal, for her respiratory system. We have only thirteen approved visitors each winter- her developmental therapists, nursing support, 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 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 durable medical equipment supply company (DME), like suction catheters, oxygen tubing and coban, but we are responsible for finding and purchasing many other items like hand sanitizer, latex gloves, and hospital-grade antibacterial and antiviral cleaning products.
As the nation begins 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. 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, but as stores quickly lose stock and people hoard items to resell at an upcharge, we have begun to scramble.
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.”
This story was submitted to Love What Matters by Jessica Wolff of Illinois. You can follow Lily’s journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read Jessica’s powerful story of her surviving daughter:
‘I chose to wear headphones. I didn’t want to hear or see Lily, afraid she would die. I kept my eyes affixed on my husband.’: Parents who lost twin daughter navigate marriage through tragedy, ‘We weren’t remotely prepared for what lay ahead’
‘You must be so relieved. I bet you can’t wait to take her to Target.’ This medical hell would follow us home for years to come.’: Mother shares reality of daughter’s tracheostomy post NICU, ‘If I was going to do this, I’d become the best damn trach parent ever’
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