When we started this silly distillery enterprise, as an attempt to make sense of our lives and create something meaningful and rooted in its place, it was only natural to share our lives with you. Those of you who’ve been a part of things from the beginning have seen a lot. You’ve seen plumbing and construction, experimentation and foraging and recipe development, and a lot of cocktail pictures. But you’ve also seen our little distillery family grow into an awesome team of 25 people. You’ve seen our son Espen born and grow into an absolutely-age-appropriately-psychotic four year old. And you’ve seen our dog Squid gray considerably. Well, a new thing has happened; we’ve had another baby boy. This time it hasn’t gone the way we would have hoped. But things sometimes go sideways, that’s just part of the deal. Ask Dr. Seuss. Here’s the story so far:
I’m sitting at the bedside of our new baby boy, Vidar. He’s a beautiful little guy with big eyes and pouty lips and a full head of hair. He’s lived outside the womb for a little over 10 weeks now. The entirety of that time has been spent in the intensive care unit at Children’s Hospital in Minneapolis. Vidar was born with a suite of structural heart abnormalities. We had about four days with him when, thanks to a magical medication that keeps the fetal circulation open, he seemed healthy. On the fifth day, he had surgery to repair his heart.
After what was by all measurable indicators a very successful surgery, Vidar did not recover the way his doctors expected. Deep one Tuesday night, about a week after the surgery, his blood pressure slithered out from underneath him, the way the waves carve the sand out from underneath your feet. The doctors revived him, in one of those TV hospital scenes where the room is full of doctors and nurses in gowns, shouting out medications and yelling things like “Don’t die on me now!” A study in the morning hours showed the walls of his heart were so thick that they couldn’t relax to let blood in to pump, like a muscle bound bro whose arms can’t hang down straight at his sides.
The doctors classified Vidar’s condition as idiopathic, meaning they didn’t know what caused his heart to swell. Over the weeks, we grew to like that word a lot. Something that arose mysteriously can disappear mysteriously, right? Instead of focusing on the negative possibilities, we just focused on hope, on positivity, on loving Vidar and appreciating the time we have with him. This worked on us. But more importantly, it worked on him.
After about a month of negative spiraling, Vidar slowly began to improve. Bit by bit they’ve been able to wean his medical support. He went from two IV poles dressed up like Christmas trees with bags and pumps and so many lines that they literally spent hours labeling and relabeling them, to now just a couple of pumps and lines. He went from IV sites in literally every limb, his neck, and his umbilical cord, slowly down to just one in his leg.
About two weeks ago they removed Vidar’s breathing tube. It was a complete and utter joy to see the bottom half of his face again. But Vidar became very agitated, and as he became agitated his heart would pump faster and faster, and his breathing would grow shallower and shallower, until the situation was quite dangerous. “I’m not sure he’s going to fly,” one of the doctors said. We just held him and bounced him and shushed him, attempting to calm him down, which is a challenge when you’re freaking out yourself. I felt a bit like the Heisman trophy, protecting the baby in my arms like a football, holding back the forces of re-intubation with a straight outstretched arm. As a short Jewish guy whose greatest hope on the sports field was to be picked second to last, this was a new feeling for me. But Vidar needed us to give him a chance.
It took about a week from extubation, but Vidar is a new baby now. He is calm. He’s gained some weight. They’re weaning his sedatives, so when he’s awake he’s more awake. Crucially, we can hold him now! So for most of every day, he’s lying in our arms in a rocking chair, just mooning up at us with his big deep eyes and cycling his feet like it’s the Tour de France. He’s begun to smile, and it’s like getting pierced in the heart with a happiness dagger every single time.
Emily and I instinctually tend toward privacy. Yes, we share some parts of our lives on the internet, but mostly the instagrammable parts, not the difficult stuff. Before Vidar’s birth, we were expecting to spend a week or two at the hospital, so we just put up maternity/paternity leave auto-replies on our email and skipped town. But the longer this has gone on, the more help we have needed. And our friends and family have stepped up in a way that surpasses imagination. Food and lodging and money have appeared just as we’ve needed them. And emotional support – visits and letters and pictures and candle lighting and toasts and prayers, have given us space to cry and be hugged. My faith that we have guardian angels, that there’s enough goodness in the universe to stand up the bad, has been restored. As I say that, I wonder if I ever really believed it until now.
Christmas is coming, and we have a very detailed plan to run around like chickens with our heads cut off, trying to balance the competing goals of being with Vidar, having a great Christmas with Espen and our families, ideally relaxing for a second, and eating a lot of Christmas cookies. We hope you have a wonderful holiday as well. New Years is approaching, and the days are beginning to get longer, and we are hopeful for Vidar’s continued healing and growth as the daylight returns. Please join us in praying for him and toasting to him and sending him healing vibes.
Love,
Joel & Emily
