I remember the day when we realized that COVID would impact our entire world. Rome and I were at the hospital, soaking up family time. Little did we know this would be the last family time we would have for two months.  A nurse came into our room and handed us a new badge with Caliyah’s name on it. She asked for our old badges back and said that they would only be allowing one person in the hospital per patient at a time.  She proceeded to tell us all the other new rules that came with this badge. That we couldn’t have any other visitors in the hospital to see our baby, that meant no family and friend could visit us, which had been so uplifting on those long early days. In the weeks afterward, more and more precautions were put in place, the country was going into lockdown, and we were struggling with if we should even visit Caliyah.

Rome and I were already living the quarantined life, but the fact that even if we wanted to venture from our monotonous routine, we couldn’t, and that took a toll on us mentally. Not to mention that being in and out of the hospital was already exposing us and causing us to catch little colds here and there. You see, Rome has an autoimmune disease that makes the common flu and cold knock him out for weeks. Just two weeks before the first case of COVID in Seattle, Rome was battling a cold that came out of nowhere. He was having the most challenging time breathing. He went to urgent care and was so weak he called me to come to pick him up. The doctor thought he had pneumonia, and no matter what, he couldn’t fight it, and it lingered for weeks. When we heard all the symptoms of COVID, we were so nervous that maybe Rome had contracted it already.

Since we knew how fragile our medically complex baby was, we started taking our own precautions early, staying away for days at a time, limiting all contact with unnecessary people, washing our hands, applying hand sanitizer before we entered Caliyah’s room, washing our hospital clothes once we walked into the house, and more. The intense anxiety I got every time I got in the car to visit Caliyah was unreal. I wanted to be by her side, but I wasn’t sure if I was doing more harm than good with visiting.  The unknown kept me up at night as more people started to contract COVID, more healthy people began to announce they were sick, taking away from the notion it was only harmful to older people. When I saw that those with respiratory issues were highly susceptible, and the fact that Caliyah just got her tracheostomy plus a ventilator made the worry sit in. I know as the days went by, the world was starting to see how things would never be the same. Each time I walked into the hospital, there were new rules and barriers set up to keep us safe. For instance, you could only have four people in an elevator at a time; then it switched to three people. They had plexiglass up at the front desk, with big stickers on the floor saying “ stand here” spread six feet apart. They had two checkpoints when you first walked into the hospital, and when we got to the NICU floor asking you “ assessment questions” like have you been out of the country, had a fever, body aches, bad cough, and then they would take your temperature.

If you passed their screening questions, they would let you in. Even Caliyah noticed the changes; every nurse and doctor wore a mask and face shield. You could see how confused she was in those first weeks, looking around for some smiling faces, and she saw none. It made a challenging experience that required warmth and human interactions so impersonal. They even put restrictions on non-essential surgeries, and Caliyah had a list of ones she needed on the horizon. I kept thinking about how this would extend our stay in the NICU, which meant my dream of all of us under one roof was even further away.

Just when life in the hospital got crazy, so did our home life. Around the third week of March, Rome got a new job with Microsoft, and it meant more work as he got onboarded, more responsibility, and fewer days in the hospital with Cali. This was such a significant moment in his career, one he worked years toward, so he had a long discussion on how I would take on on more of Caliyah’s cares since I was on maternity leave. Rome’s visits went down to only Saturdays. It was hard for all of us. We were both sacrificing so much in two different ways. Rome giving up his family time to take this big promotion and provide for our family, and I was pouring my extra sparing minutes to make sure Caliyah felt the love from her family.

That love and human touch became essential for Caliyah as they finally let the operating room open, and Caliyah already had two surgeries lined up, gtube surgery, and tarsorrhaphy. I firmly believe our loved helped her heal, so that is what we did day in and day out.