Saturday, January 1 dawned wrought with the promise of a new year. As January 1s tend to do. Marjorie was still with my parents in Jacksonville, and Matthew and I were slowly getting ready to head to the hospital. And then the phone rang.

Benjamin spiked a fever overnight, and then tested positive for COVID! They were able to give him an antiviral drug called Remdezivir. My understanding is that this drug has been approved for emergency use for children under 12. Fortunately a cardiac baby with covid qualified and he started treatment within hours of testing positive. The staff was immediately instructed to take extensive precautions (gowns, gloves, eye protection, multiple masks) when entering his room. And only 1 person was allowed to be his visitor. I don’t even think we talked about it – I was automatically the “one”. While we waited for more information, including permission to come to the hospital, I drove around Interlachen and Palatka looking for an at- home covid test for Matthew and me. There were none. And no appointments anywhere. So I went home, and we kept waiting.

Saturday afternoon, they said I could come visit. I just couldn’t leave the room except to go straight back to my car. No problem. I packed snacks and coffee and made the 45 minute drive. Repeat Sunday.

On Monday morning, I found a local urgent care center advertising covid tests on their scrolling billboard. I was second in line when they opened and paid $50 because “insurance won’t pay for it”. Which I’m 99.9% sure means they just didn’t bother billing it, but given the fact that my PCICU baby was sick and I wanted to make sure I wasn’t the cause, I didn’t argue. My test was negative. Surprised and relieved, I went home, took a nap, and then headed to the hospital. Before I left on Monday evening, a charge nurse informed me that I could either leave/ go home/ not come back while his viral load was so high, or I could stay in his room and risk getting sick myself. Keep in mind by this time I had already been with the covid baby for the 3 days since he’d been positive. But the risks of something terrible happening and not being allowed to be with him far outweighed the risk of getting sick. So I stayed.

Matthew brought me a bag of clothes and toiletries, and I hunkered down. Over the course of the week, the hospital fed me. The techs brought me Starbucks. One of the nurses brought me chick-fil-a. The child life specialist brought me a giant bag of snacks and a sudoku book. One of the occupational therapists even made a Target run for me for clean shirts and baby blankets, because things started to look a little dicey toward the end of the week. The sleeping arrangements were awful, but the roommate was perfect.

When Benjamin was born, I was fearful that he wouldn’t know me or bond with me. But last week I realized that against the odds, he knows his mama. He was in such a good mood all week, and barely cried despite being sick with covid. For several weeks now, night shift has reported him being fussy at night, but now we know that he just wants his mama. So Matthew and I are brainstorming how frequently one of us should spend the night with him. We want to give him what he needs but also protect our own mental health.

On Wednesday, Jan. 5, they repeated his covid test. Still positive. But he was coughing/ sneezing a bit so we weren’t surprised. On Saturday, Jan. 8, he was still positive but the viral load was decreasing so they said I could leave again. So I packed my things and hightailed it home before they could change their minds again!

When I arrived home, Marjorie lost her little mind. It had been almost 2 weeks since I last saw her. I made her wait to snuggle until I’d showered and changed clothes – can’t risk spreading Covid to my other kid. Although whether or not that actually does anything is anyone’s guess.

So here we are on Tuesday, Jan. 11. Benjamin’s still under covid precautions, and I’m still the only allowed visitor. But all things considered we’re no worse for wear. They will retest his viral load on Saturday to determine when he might again be a viable transplant candidate. This whole debacle has paused his eligibility because they won’t do a transplant while he has covid. But we’re trusting the team even though it’s so trying at times. And trusting God even though at times that feels counter intuitive. To everyone who has reached out to us over the last 11 days, thank you. Once again, the faith, prayers, and love of our family and friends continues to carry us and point us to Jesus. They’re rechecking Benjamin’s viral load over the next few days and hopefully Matthew will be allowed to visit soon! 

And we’re ultimately hopeful that we can close this hospital chapter sooner than later.