Brooke Tibbits | 09.20.21
Moms sleep lightly, and with four kids under 10, Kate Erickson hardly remembers deep rest. But the sound that makes it possible for Kate and her husband, Rob, to close their eyes at night is the steady hum and hiss of the ventilator keeping their daughter, Reese, alive.
An overnight nurse tends to the equipment surrounding the toddler’s crib, minding the monitors, pumps and alarms. This has been the arrangement since the Ericksons brought their baby home from the hospital on Nov. 23, 2020, a year and a day after her birth.
Reese is an identical—and conjoined—twin. She and sister Remi were born at Children’s Minnesota on Nov. 22, 2019, connected through their chest wall, abdomen and the top part of their pelvis. They shared a liver, and even more uncommonly, an umbilical cord.
During a closely monitored pregnancy, Kate and Rob had learned that Remi’s stronger heart and kidneys were providing extra support to Reese. But upon delivery at 36 weeks, Reese also struggled with a weakened airway. She needed a tracheostomy to help her breathe and a stomach tube for feeding. “It felt like when one problem was fixed, another popped up,” Kate said.
Reese’s more fragile health, especially her weak heart, and the escalating COVID-19 pandemic were of constant concern as dozens of pediatric specialists created a plan to surgically separate the Erickson twins. The right day was April 9, 2020, and the girls emerged separate, but whole, after a seven-hour procedure involving 20 surgeons, led by Dr. Joseph Lillegard.
Remi was able to go home to Otsego, MN, a month later, where brother Chase, now 10, and sister Leana, 6, continue to make up for lost time with an abundance of love. She is feisty, fearless and healthy. But Reese faced additional complications after the separation surgery, including a stroke that caused loss of movement on her left side, and damage to her brain. She remained in intensive care through her first birthday.
“We lived in the hospital for a year, just in survival mode,” Kate said. “But with two older kids at home, we had to keep pushing forward. We just kept thinking about whatever was positive … how we could give Reese the best chance possible.”
What that best chance would look like, and its impact on the Erickson Family, were unclear. But it was absolutely clear that Kate and Rob were going to bring their girl home.
“Being separated as a family was tough stuff, mentally and emotionally,” Kate said. Due to COVID restrictions, Chase and Leana had not seen Reese for 8 months. Rob’s time was divided between fatherhood and running his real estate business to support the family, and Kate was managing remote school and a toddler whose twin was in a hospital 40 minutes away.
Days before Thanksgiving 2020, though, with approval from her medical team and the equivalent of an ICU set up in her nursery, Reese came home to 24/7 nursing support and parents more medically trained than they ever imagined.
Her homecoming had a healing effect on the family. It also turned Rob and Kate into caregivers, but they don’t look at it that way: “Caregiving doesn’t feel much different than just being a mom,” Kate said. “You’re going to do whatever you have to do for your kid, just like you would for your baby with normal needs.”
In a typical day—or as close to a typical day as any family of six experiences—Reese’s 90-minute morning and evening routines include a strict schedule of 15 medications, preparing food for her feeding tube and cleaning and replacing her medical equipment. There are also physical, breathing and vision therapies, requiring Reese to be buckled into the car, with a portable ventilator and a nurse beside her, for appointments at the Minneapolis hospital campus.
“You have to really make sure you’re on top of everything,” Kate said. “You can’t forget anything, because if you do, Reese could end up with an infection. Any type of misstep could end up being very bad.”
In Reese and Remi’s CaringBridge Journal, which Kate still updates to show people “there is always hope and not to give up,” she wrote, “With Reese’s condition, we always have a green, yellow and red zone.”
In the green zone, Reese gets sticky kisses and hugs from her twin, watches Chase—a born adventurer—climb trees and scale walls, and takes in Leana assembling a Lego masterpiece. She also loves bath time and having her hair brushed.
“Yes, she has a trach and a feeding tube, and you have to do all this extra stuff for her,” Kate said. “But it gives you that little bond when you can do normal things with her.”
But some days are in the yellow and red zones. Kate wrote on CaringBridge about one in which Reese was dealing with teething, diaper rash and seizures, all at once. Another time, as Kate talked on the phone with a triage nurse to decide whether Reese should be taken to the emergency department, Remi was cheerfully sprinkling birdseed on the deck, but mostly the kitchen floor.
“There are days when you’re like, ‘Oh, my gosh, this is just not going to work,’” Kate said. “But then the tiniest thing sparks hope again, and I think, ‘We actually can do this.’ We are going to fight hard to get Reese exactly where she needs to be. It might not be like other kids, but she is going to be her own person.”
Rob is Kate’s partner in the fight. They met in grade school and married after high school, while Rob was in the Air Force. (Kate only half-jokes about Rob’s training as a combat controller being a parenthood asset.)
While date nights aren’t possible yet, the Ericksons attempt to have dinner as a family, or whatever activities they can manage, whenever extra help is available. And once the kids are in bed, Rob and Kate sit down for a minute together. “We just take a big, deep breath and say, ‘We survived another day,’” Kate said.
Neither the Ericksons nor Reese’s medical team can predict how her future may unfold. But she lives surrounded by love—and hope. “We keep the focus on hope and will keep doing everything we can to give Reese her best chance possible,” Kate said. “Look at this girl! Can you imagine not giving her that chance?”