MADISON, Wis. - As Bianca Dotson was getting ready to be a mom for the first time, she got more than a few early surprises. She found out she was pregnant with twins, but at 22 weeks, she also learned the siblings weren't sharing well.
Ky-Moni and Kristian had twin-twin transfusion syndrome, meaning the boys weren't getting nutrients from the placenta evenly, and Kristian was much smaller than his brother.
Dotson said her doctors recommended terminating one of the boys to save the other, but she said that was not something she nor her fiance Chris Orr would consider. She was admitted to Meriter Hospital in early January, and the boys were born premature via C-section seven weeks later. Kristian weighed just 1 pound, 11 ounces, and Ky-Moni was 2 pounds, 15 ounces. Dotson couldn't be with her babies all the time, as she was recovering from the birth, and she and Orr live 40 minutes away in Blanchardville.
"It's hard. I cried a lot," Dotson said. "You're so used to carrying these babies with you. And then the fact that I had to leave them there; no one ever wants to leave their kids. You want to be there all day and night, all the time."
The twin preemies needed round-the-clock care in the NICU to grow and further develop their lungs and brains. But the care they get at Meriter comes with a little more help from folks without the stethoscopes. A little-known but highly sought-after Meriter program comes in to lend a hand -- or rather, two hands, each.
Getting called up for the cuddle crew
It's the best and worst kept secret at the hospital and perhaps the city: The NICU volunteer cuddling program has a yearslong waiting list full of people who want to donate their time every week to help the hospital's littlest patients. But most people haven't heard about the program, including Dotson. She found out about it when she came to visit her babies and met a cuddler who was soothing one of the boys.
"It felt like weight was lifted, really," Dotson said. "I am just one person, so just knowing that there's a person that's safe and secure, it means a lot. It means a lot to know there's someone there. Just someone showing them the attention that they need and they deserve is a good thing."
A crew of about 60 volunteers who have been vetted by the hospital provide hundreds of hours of help in the NICU every month. The program started in 1988, and its first cuddler is still volunteering in the NICU, hospital spokeswoman Leah Huibregtse said. At one time, the list had an estimated 10-year wait, but the wait is down to about four years, Huibregtse said.
When the cuddlers arrive for a shift, they scrub and smock up, and nurses let them know where they're needed. Sometimes it's helping with laundry, sterilizing a breast pump or moving furniture for a floor-wide exercise class. And then there are the times when the little patients need a little extra TLC.
"The babies, of course, are well cared for by the nursing staff, and we are there just to provide a level of calmness for them," Britney Luce, a NICU volunteer, said. "When the baby is calm, they can develop better and they meet those milestones that they need to meet."
Luce, a 51-year-old interior designer from McFarland, got the email to join the cuddle team four years after signing up. She had expected to have to wait until after retirement to help out, but she still found a way to spend a few hours each week in the NICU.
"Shift after shift, you get to see those babies on a regular basis and it's just wonderful," Luce said. "They all make an impression on me. I usually do talk to them and … I let them know that their start can be a little rough into this world, but it's gonna be OK."
Luce said she uses some of the same soothing skills she learned raising her children.
"The same comfort-type things that I did for my own children, I do here for these babies too," she said. "I tend to stand up when I cuddle. I like to sway with them and I hum and do some of the same things I did with my own boys."
Tom Brennan, a married father of four and grandfather of two, had retired and then rejoined the workforce again before he "got called up for duty" to cuddle, he said. Brennan retired from the Monona Police Department after an overall 30-year career in law enforcement. He later decided retirement wasn't for him and took a position at Meriter as manager of logistics, which is where he heard about the cuddling program. Although he'd already spent a career in serving others, he said he discovered that cuddling in the NICU offered something new.
"It's so profound I think, in a way, because you're helping a child who is in need of a lot of support and a lot of comfort," Brennan said. "You're starting at life's beginning, really."
Brenda Johll, of Oregon, said she filled out the application to volunteer while she was still in the hospital after she'd just had a child at Meriter. Years later she received the call to join the crew and has been a cuddler for eight years.
Johll, a mom of two kids who are 19 and 21 years old, said she likes to give the babies something special that she shared with her own babies.
"It's good in their growth process just to read with them," Johll said. "They can they hear it. Some people talk and tell stories. I prefer to read books. I read to both of mine at bedtime. It's just fun to share the love of that with them. Even though they're tiny and people are like, why do you do that? Because it is good for them. It helps them grow."
Meriter nurse and NICU family liaison Laura Megna said the premature babies in the unit are there for a variety of reasons, and what they need can vary greatly.
"They're here for a long time, and of course, (since they were born early) they have a lot of developmental needs that they've missed out on," Megna said. "Reading, voice, sound, eye contact; so all those kind of developmental things that are happening in addition to their medical needs."
For example, babies who are going through withdrawal require more soothing, singing, softness or rocking; things to help comfort them. Megna said the volunteers help make sure the babies get positive, calming experiences to counter some of the negative, but necessary, medical care.
"Most of our families have ... other children, they have pets, they live far away, they might not have great transportation, they have their own medical needs," Megna said. "A lot of our moms are very sick as well from their pregnancy. Being here is an important piece of the puzzle, but it's often just not doable 24 hours a day. And so the cuddlers can step in and provide that human piece when the family is not able to be here."
How to help
While the wait to become a cuddler is yearslong, the NICU has many other needs and opportunities to help.
Megna said the NICU uses small donations to help families enjoy their babies, feel the comforts of home and ease stress while they're there. The NICU wish list includes requests for gift cards for gas, restaurants and stores like Walmart and Target. Also on the list are handheld mirrors, thank you cards, arts and crafts supplies, which are used by nurses to create picture projects and name signs, activities for siblings of NICU patients, button-up sleeper outfits (sizes preemie, newborn and 0-3 months) and white noise machines.
While the cuddler program is the most popular volunteer spot at Meriter, the hospital has a variety of opportunities in more than a dozen other departments including the birthing center, emergency services and flower delivery.
The volunteer office also helps coordinate other special projects that help the babies and their families. As part of the new scent cloth program, community volunteers sew fabric donated to the NICU into small pairs of hearts that are used for mom and baby to be able to smell each other while they're apart.
"Scent is one of the very first senses to develop," Megna said. "It's one of the strongest for even our tiniest babies that are born. They can smell mom, they can smell her milk."
Scent cloths also help breastfeeding moms make milk and prevent postpartum depression. The NICU also has a need for people who can make blankets, hats and a specially designed octopus that acts as a scent cloth and its tentacles mimic the umbilical cord.
For volunteer cuddlers, a job well done often means saying goodbye to the babies as they get strong enough to go home to join their families full time. An update about the babies they've cuddled is rare, but Luce said no news is good news.
"We just assume they're off home and healthy," she said.
In the NICU, the cuddling continues as new little patients arrive every week. The rocking, snuggling, booking reading and soft speaking help comfort a new little life.
Twin preemies Kristian and Ky-Moni have both returned home, Dotson said. Ky-Moni, up to 8 pounds, came home on Easter after 10 weeks in the hospital. Kristian, who required surgery for a hernia repair, another common procedure for premature boys, followed three weeks later, the day before Mother's Day.
"Babies will be babies," Dotson said. "So I think at the end of the day, just someone showing them the attention that they need and they deserve is a good thing."
But as Brennan says, the benefit goes both ways.
"It's just a blessing for me," Brennan said. "A real privilege and honor, to be able to provide care for our little ones in the hospital."
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