We’re in the midst of the most wonderful time of year: the leaves are changing, snow is falling and there is a crisp feel in the air. Families will travel far distances to be together for holidays, and I will be at home on my couch. Why? Because I have a micro preemie.
We spent 256 very long days in the hospital. My daughter, Lily, fought for her life countless times, and as a result is considered “medically fragile.”She has a tracheostomy to treat her primary diagnosis, bronchiopulmonary dysplasia, or chronic lung disease of prematurity. The life-saving machines that Lily required in her earliest days did a significant amount of damage to her lungs. They are still extremely weak and Lily is very susceptible to infection.
In the coming years, even if she no longer needs her trach, we are instituting a quarantine during flu season. Lily, my husband and I will spend the next six months in isolation so as not to expose Lily to any germs. The common cold, a small stomach bug, or the sniffles in a grown adult can result in a hospitalization for Lily, or even possible death. There is a misconception that babies should be exposed to germs to strengthen their immunity, but that does not apply to preemies born before 32 weeks gestation. Our rules may seem very strict to those unfamiliar to our situation, but we have watched way too many micro preemies and trached babies succumb to illness because someone was careless.
We will live off of food delivery services, mail-based subscriptions for household items and grocery store drive-thru pick-up. Lily’s monthly specialist appointments will be done via video chat and email. Lily’s flu and RSV vaccines will be administered at home. We will not allow anyone in our home who has been ill, been exposed to anyone who is ill, or has children. Our sanitization protocol is extremely extensive and we mandate that everyone who enters our home (nursing staff, developmental therapists and grandparents) be up-to-date on all vaccinations including the flu shot. We forego trick-or-treating, family Thanksgiving, holiday parties with friends, work Christmas parties and New Year’s Eve so as to limit exposure to illness.
With all of these new rules come a mixed bag of emotions. I am terrified that Lily will have to be admitted to the hospital. The trauma from our eight month inpatient stay is very fresh in my mind, and I will do anything that I can to keep Lily home. Isolation will be difficult for our mental health, and we will greatly miss our friends and families during this time. We worry that we will be “forgotten” and life will move on without us because we can’t be physically present. At the same time, having Lily at home is a privilege that we would never take for granted. There were many, many days that we were unsure that she would ever come home, so few years of solitude seems trivial in exchange for my daughter’s well-being.
This is not forever. As Lily’s body grows, so will her lungs. We hope that one day she will no longer need her trach and she will be able to run, play and attend school with her same-age peers. Our days of isolation will one day be a distant memory. For now, the safety of my child is the single most important thing in my world. I will not cater to anyone’s feelings at the expense of my child’s health. Those who love us will understand, and those who don’t can kick rocks.