VCU news

By Anne Dreyfuss
C. Kenneth and Dianne Wright Center for Clinical and Translational Research

Midmorning light floods through the windows of Room 164 on the sixth floor of VCU Medical Center’s Critical Care Hospital. For nearly a year, the corner room of the hospital’s neonatal intensive care unit served as Kaleb Graves’ nursery. Today, he is going home for the first time — 10 days short of his first birthday.

“Give me some smiles,” Dana Griffin-Graves coos to her son, who is gazing up at her and gurgling with a dimply smile. The 42-year-old mother knows Room 164 well. She and her husband, Arkell, have been there every day since their son’s birth. “It feels surreal to be leaving today,” Dana says. “I feel like I am having an out-of-body experience.”   

Baby Buns

Last fall Dana discovered she was 19 weeks pregnant.

The then-41-year-old had struggled with fertility throughout her 17-year marriage to Arkell. The couple stopped trying to conceive after experiencing four miscarriages and a stillbirth.

Dana made an appointment with her family physician when she noticed unusual swelling in her legs. “He told me he was doing a few tests, and when he came back in the exam room, he asked, ‘How far along are you?’” she said.

Dana surprised her husband with the news by leaving ultrasound photos and buns in the couple’s oven. A video she posted on YouTube titled “Buns in the Oven” shows Arkell’s tearful response to the news that he would soon be a dad. Dana posted the video online to share her husband’s reaction with family, but it quickly went viral, catapulting the Dinwiddie County couple to internet fame and earning Kaleb his nickname: “Baby Buns.” To date, the YouTube video has more than 10 million views.

The excitement was soon cut short, however, as Dana was admitted to a local hospital only a few days after announcing the pregnancy.

“When I went in for my appointment they took my blood pressure and said, ‘We are not going to see you today,’” Dana said. Her family physician had already called a local hospital and had a room waiting for her in the intensive care unit.

Dana, who had hypertension prior to the pregnancy, spent two days in the intensive care unit with her blood pressure at near-fatal levels. Physicians warned her that the unborn baby was putting her health at risk. “They told me they wouldn’t be able to do anything for me and that I needed to terminate the pregnancy,” she said. “I told them no, and they said they would send me to VCU Medical Center.”

She was transported by ambulance to the academic medical center, where she stayed for another two weeks, continuing with the pregnancy as long as possible to give her son the best chance for survival. “The doctors told me if I didn’t deliver soon that it was going to be fatal for me and the baby,” she said. “I was scared, but I was also determined. I kept telling the doctors, ‘This is my last chance and I really want to have this baby.’”

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Against the odds

On Oct. 20, 2015, Kaleb was born at 23 weeks weighing only 13 ounces.

At Dana’s request, hospital staff at VCU Health’s Labor and Delivery Unit played the song “You” by Jesse Powell through the loudspeakers during the C-section. The song played for Dana’s first dance with Arkell at their wedding. “I kept my eyes closed tight the entire time in the delivery room,” Dana said. “I had already prepared myself for the possibility that Kaleb wasn’t going to make it.”

Kaleb had to be resuscitated by a team of physicians immediately after his birth. When the doctor came back into the delivery room, he pulled an iPhone 6s out of his pocket. “He told us, ‘Your son is no longer than this,’” Dana said.

Dana was not able to see Kaleb until the day after his birth because her health kept her confined to a hospital bed. She was wheeled from her ICU room to the NICU at Children’s Hospital of Richmond at VCU to hold her son. There, Dana, who had less than 24 hours earlier celebrated the birth of her baby, was told Kaleb likely would not make it through the night.

“I remember seeing a red light on the outside of his hospital room door,” she said. “The doctors told me they wanted me to have a chance to hold him and say goodbye.”

It took eight people to get the 13-ounce newborn out of the incubator. “He was so fragile, he was so small and he was on so many medications,” Dana said. “He literally fit in the palm of my hand.”

I couldn’t hold him again until he was five weeks old.

Crouched over him as she sat in a hospital wheelchair, Dana sang softly to her son until he fell asleep.

Against daunting odds, Kaleb made it through the night. It would be more than a month, however, before Dana could hold him again. Kaleb’s skin was still developing over his premature form and his fragility made it unsafe for him to be removed from the incubator.

“I would put my hand in the incubator and touch his foot,” she said. “But I couldn’t hold him again until he was five weeks old.”

Extended family

Since birth, Kaleb has undergone two heart surgeries to repair a hole in his heart and treat pulmonary hypertension. In addition, fluid was drained from his brain, and he has been intubated for months due to chronic lung disease.

Dana and her husband have not missed a day at the hospital. “He works the morning shift and I am here for the evening shift,” Dana said.

Before going to work as recreation supervisor at a federal prison in Petersburg, Arkell drives more than 40 miles to the Children’s Hospital of Richmond at VCU to visit Kaleb from 8 a.m. to noon. While he is there, he works with physical therapists and consults with nurses on his son’s condition.

“They show me exercises to do with him,” Arkell said. “I don’t know how long it takes to get your nursing degree, but I could probably take the test right now because the nurses have taught me so much about working with premature babies.”

When he arrives, Arkell often meets with the same nurses who were with Dana the night before. “A lot of nurses will stay at the hospital longer than they are supposed to because they are familiar with him,” Arkell said. “I have seen them extend their hours just to make sure he is OK.”

Kaleb has also benefited from being treated at an academic medical center, where medical students, residents and other health sciences students played an active role in his care.

“Some students come back to check in on him even after their neonatal medicine rotation has ended,” Arkell said. “They played a big part in his journey as well.”

Dana leaves her job as district manager for a local finance company at 6 p.m., usually arriving at the hospital by 6:30 p.m. She stays at the hospital until past midnight every night. During her visits, she sings and reads to her son. She also visits with the friends she has made at VCU Medical Center.

“The hospital staff here have so much on their hands because not only do they take care of the babies, they also take care of the parents,” Dana said. “I was a nervous wreck when I arrived here a year ago. I didn’t know what to expect, but the hospital staff comforted me. I feel like I have a family here now.”

I didn’t know what to expect, but the hospital staff comforted me. I feel like I have a family here now.

Neonatal medicine nurse Chelsea Godbolt says Arkell and Dana’s attentiveness to their son had a powerful, but intangible effect on his progress. “They are big advocates for their son,” Godbolt said, adding that whenever Kaleb needed a new procedure, she would bring medical literature on the condition for his parents to review.

“It is inspiring to watch how much Kaleb has developed as a result of the family support,” Godbolt said. “Children thrive with involved parents. There is a lot we can do medically, but so much of Kaleb’s success has to be credited to the family aspect that we cannot provide.”

To show her support for his caregivers, Dana keeps Kaleb’s hospital room stocked with freshly baked cookies and coffee. “There are two respiratory therapists on the unit who love Sweet Tarts, so I keep a stash of Sweet Tart candies on the side that are just for them,” she said.

Dana has also made more than 250 gift bags for parents and families she has met on the unit. The gift bags include journals, candy, slippers and gift cards to coffee shops and restaurants in the hospital.

“I have made so many friends at VCU Medical Center, even with the people who work at the parking deck,” Dana said. “It was through the grace of God that I was able to come here.”

In addition to VCU Health staff, Arkell and Dana have relied on the support of thousands of people around the world who heard about their story online. The family’s story has been covered by People magazine, BuzzFeed News and the Daily Mail, as well as by local television news stations. The couple shares the baby’s progress on their Facebook page, where more than 188,000 followers around the world offer words of encouragement nearly every day. They are also on GoFundMe, where Dana’s sister created a page to help cover medical expenses and the cost of a “beautiful, well-deserved nursery” for Kaleb to come home to. The page has raised more than $10,000 of its $20,000 goal to date.

Pomp and circumstance

On the morning of Kaleb’s departure from VCU Medical Center, Dana is wearing a peacock yellow pantsuit with a blue silk blouse and matching bowed stiletto heels. She had been at the hospital until past midnight the night before, but she was not going to let lack of sleep tarnish her image.

“My wife is amazing,” says Arkell, who is also in his Sunday best; a navy blue suit with a burnt orange flower pinned to his lapel. “Dana is one of the toughest individuals I know. The amount of hours she has put in with our son while still running the house and working is unbelievable.”

Hooked to a feeding tube and a ventilator in his hospital bed cradle, Kaleb is all smiles wearing a striped three-piece suit with a matching bow tie. He has on tiny socks with tiny star prints. Dana slips a pair of Velcro baby shoes over his socks — the first he has ever worn outside. “Are you wearing your outside shoes?” she asks him endearingly, and then looks up at the crowd who has gathered in the room. In her proudest mama voice, she proclaims: “He’s wearing his stars and stripes.”

Dana brought a baby blue cap and gown for Kaleb’s “graduation” from VCU Medical Center. She hums church hymns as she dresses him, and the two exist for that moment alone in the bustling hospital room.

For most of the morning, the couple basks in the joy of the day as streams of hospital staff visit to say goodbye to Kaleb. “Kaleb’s care has been a team effort between them and us,” neonatal intensive care nurse Godbolt says.

Godbolt started work at 7 p.m. the night before and was still there when the couple left the hospital at 1 p.m. She planned to go home to sleep and return to work at 7 p.m. that evening. “It is bittersweet for Dana and Arkell to be leaving today,” Godbolt says. “I cried all day yesterday and I will probably cry more today.”

Before the family leaves, hospital chaplain Joshua Andrzejewski recites a benediction over Kaleb. Andrzejewski met Kaleb on one of his first days of life and has been a regular visitor. “I have been inspired by their faith in their son,” Andrzejewski said. “There is a lot we do here that we can measure, but the healing power of the bond between parents and their children cannot be explained.”

As far as measurements go, however, Kaleb has made great strides since his birth at 13 ounces nearly a year ago. The rosy-cheeked baby is leaving the hospital at a plump 13 pounds.

Despite the advances he has made in the past year, obstacles still await Kaleb, as is clear by the trove of medical equipment that his parent carried with them as they departed the hospital. The baby went home hooked to a feeding tube and an at-home ventilator. Later that day, a medical device company would deliver more equipment to the Graves’ home. His list of medications far exceeds that of a healthy 1-year-old and he will require full-time at-home nursing care for the foreseeable future. This week, the family has six doctor appointments at VCU Medical Center.

While Kaleb’s medical journey is far from over, Dana and Arkell remain optimistic. “I am looking forward to just being a normal family,” Arkell said. “If we do have to spend late nights with Kaleb, at least we will all be at home together.”

Worries about the future are put aside back in Kaleb’s hospital room goodbye party and for most of the morning the parents maintain composure, smiling for photos and greeting visitors as they await the hospital discharge. But when the nurse comes in to the room to cut the medical bands off Kaleb’s wrists, signifying his imminent transition from the hospital to the outside world, both parents break down.

“For the first time ever, you get to feel the wind and see the sunshine,” Dana whispers quietly to her son. “I’m so proud of you. We came a long way.”

 

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