'Love him as he is': Vikre family together after newborn's health crisis
Vidar Vikre reciprocated his mother's smile as she leaned her face close to his. Emily Vikre sat on the couch to tuck her 4-month-old son's arms and legs into his blue snowsuit, and then placed him in her mother's arms. "C'mon, Mr. Vidar," Lise L...
Vidar Vikre reciprocated his mother's smile as she leaned her face close to his.
Emily Vikre sat on the couch to tuck her 4-month-old son's arms and legs into his blue snowsuit, and then placed him in her mother's arms.
"C'mon, Mr. Vidar," Lise Lunge-Larsen said to her grandson before pushing his stroller around the neighborhood in the warm sunshine last week.
Vidar likes to watch the sky and then doze off to the movement of the stroller rolling on the road, Emily explained. The cold weather has limited the walks outside in recent weeks - but Vidar's family is just happy to have him home.
Vidar finally made it to Duluth a month ago after heart problems kept him in the intensive care unit, and his parents Emily and Joel Vikre encamped at Children's Hospital in Minneapolis, for the first three months of his life. Halloween, Thanksgiving, Christmas and New Year's were spent at the hospital. The route between Minneapolis and Duluth became well-trodden while their older son, 4-year-old Espen Vikre, was cared for by family in Duluth during the week and then spent weekends with them in Minneapolis. They also continued to check in on their Canal Park business, Vikre Distillery, but Emily credits their employees with being "fantastic" workers who were able to step up to help with the business while Emily and Joel focused on their family.
Once word got out among their friends, church and Duluth's business community, Emily noted that supporters in Duluth and elsewhere were rooting for Vidar. People's help, love and prayers held them up and made them feel like they weren't on their own, she said.
"I spent a lot of time in tears of gratitude for sure, just thinking about how many people cared," Emily said.
Concerns about Vidar's health began during pregnancy. Emily said it's easy to spiral into fear - but instead of giving in to the fear, she said, she had to accept that things happen. There's power in positive thinking, and Emily said she wanted Vidar to receive joy and love from her instead of negativity and fear.
"The best thing you can do is take as much good as you can from them. I don't think bad things happen to teach us a lesson, but I think we can always choose to change our mindset as much as we can to learn something or love something from it. I learned a lot about patience and acceptance during the pregnancy and also about listening to my intuition rather than my fears," Emily said.
Surgery at 5 days old
An ultrasound when Emily was 12 weeks pregnant found that Vidar had cystic hygroma, a fluid cyst in his neck, and they were told there was an 80 percent chance that that the pregnancy wouldn't last until 20 weeks. The hygroma usually indicates genetic abnormalities, but genetic tests and the amniocentesis came back negative, Emily said.
At 18 weeks, doctors began focusing on Vidar's heart, thinking he might have been missing a part of it. But they found his heart intact.
As Vidar continued to grow, everything looked good except for a narrowing of the aorta called a coarctation. After 30 weeks of stress, Emily and Joel had a diagnosis. Surgery to repair the coarctation was scheduled for when Vidar was 5 days old, with two weeks expected for recovery. Vidar was born at 39 weeks and went into the ICU at Children's Hospital in preparation for his surgery.
"We had this perfect, super-healthy, awesome, spunky little baby," Emily said. "He was transferred up to the heart unit and had the surgery, which was terrifying. We thought at the time that was what terrifying was, but that wasn't at all terrifying compared to later on."
Vidar's surgery went well, but his lungs weren't clearing and his oxygen numbers weren't good afterward. Doctors increased his breathing support every day. Emily and Joel were staying at a nearby Airbnb when six days after the surgery, they got a call at 3 a.m. that they had to come to the hospital immediately.
"He had coded, basically, so (we) rushed in there, terrified. 'What is going on?' It's one of those scenes out of 'ER.' We couldn't go in the room because there was a code team in there, doctors and nurses and beeps. Thirteen people in this room around this little baby in bed," Emily said.
A doctor told Emily and Joel that Vidar had stopped trying to breathe on his own and had no blood pressure. Doctors had to kick-start Vidar's heart and an echocardiogram showed that his heart's ventricle walls had thickened to the point where blood couldn't get through.
The next day was a blur as geneticists and doctors talked about possible genetic syndromes. There was talk about Vidar needing a heart transplant, but his lungs remained cloudy and it was too risky for him to even be a transplant candidate, Emily said.
"It becomes a waiting game. We were just waiting there, watching our little baby. A million sedatives and breathing tube and drugs and IVs into every single appendage. It was a month, I feel like, of him being stable, but not getting better," Emily said.
'Just be in it and love'
Vidar would have days when he would seem better and happier, but then there days when Joel and Emily could see him struggling to breathe. But Emily said she knew "he was meant to be here" and that he was going to be OK. The day after Vidar coded, Emily said she had a dream that gave her clarity.
"I woke up from the dream knowing that we have to love him as he is right here, right now, and that means even loving the hospital experience and being with him in the hospital. Otherwise, you're missing your time with your baby. No matter how it turns out, what you have to do is love your baby right there instead of spending all your energy on being scared about what's going to happen next. Just be in it and love," Emily said.
The turning point came when a doctor changed the type of beta blocker for Vidar, and they watched his stats begin to improve.
"Day by day, it was this unbelievable feeling. ... We were like, 'Oh my God, his heart and lungs are doing things!' " Emily exclaimed, pumping her fists in the air.
Once Vidar's breathing tube was removed after two months - a difficult process because of the pain - "he just started to take off and fly and get better and better. The conversation shifted from, 'You're going to be in the hospital for months and you're probably going to need a transplant' to, 'This could probably be managed with medicine,' " she said.
In the final echocardiogram before he was discharged, the walls of Vidar's heart looked nearly normal. Now home, he continues to be fed through a tube and receives medication every three hours. He has a physical therapist to help and goes to doctor appointments both in the Twin Cities and Duluth, Emily said, commenting that they're going to become "good friends" with the cardiologists.
Geneticists have found one difference in Vidar's DNA that has to do with muscles, but it's still not a clear answer.
"They're like, 'It's never been seen before, maybe this is it, we want to follow it.' It's still not like, 'Oh, we have an explanation.' It's a, 'Maybe this is meaningful, maybe it's not," Emily said.