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Miracle Kid: James Davis

Wayland Boy Spends 297 Days in the NICU

JamesSuffering from severe preeclampsia, Jennifer (Ross) Davis’ organs were shutting down and her baby’s heart rate was dropping. Jennifer underwent an emergency C-section at UR Medicine’s Strong Memorial Hospital, where she’d been on bedrest for two weeks. James was born on July 19 at just 26 weeks weighing only 1 pound, 8 ounces. He was put on oxygen and admitted to the Neonatal Intensive Care Unit (NICU) at UR Medicine’s Golisano Children’s Hospital. His heart rate was undetectable. Wayland residents Jennifer and her then fiancé Richard Davis would spend the next 297 days in the hospital with their son.

“No one can prepare you for when you enter the NICU and see your baby lying there,” Jennifer said. “It was a rollercoaster of emotions.”

James’ health was deteriorating rapidly. Doctors could see that his abdomen was distended and an X-ray revealed there was a blockage that created a hole in his small bowel, the location of which could lead to greater problems for James. James was just 12 days old when Christopher Gitzelmann, M.D., a pediatric surgeon at Golisano Children’s Hospital, performed bedside surgery, removing five centimeters of James’ small bowel.

James and Jen“The surgery was an incredible hurdle,” said Jeffrey Meyers, M.D., a neonatologist. “It would be for any child as sick as James was, let alone at just 26 weeks of age.”

James began the slow process of recovery from surgery, receiving nutrients and medication through a nasogastric (NG) tube and a peripherally inserted central catheter, or PICC line. Jennifer wasn’t able to hold her son until he was 2 months old.

James’ course would continue to be complicated with multiple serious medical hurdles, including four bouts of sepsis. Ultimately, a blood clot was found at the end of the PICC line in James’ leg, the likely source of the infection. The combination of having a PICC line and being premature made James more prone to infection because of his immature immune system.

“Each of James’ medical obstacles was potentially life threatening on its own,” Gitzelmann said.

“We went day by day asking if James was going to make it,” Jennifer said. “There were so many setbacks I didn’t know how far I could be pushed. He definitely made me and my husband stronger. We gave him strength and he gave us strength.”

JamesJames was on a breathing tube for a month while recovering from recurring sepsis and had to undergo multiple platelet transfusions. Clearing the sepsis required about six weeks of antibiotic treatment.

“His medical team was with us through every step of the way,” Richard said. “It was such a grave situation, but the care was always amazing.”

Marsha Pulhamus, a pediatric nurse practitioner at Golisano Children’s Hospital and part of Gitzelmann’s team, was impressed with the care and time Jennifer and Richard gave their baby. “Despite how long he was here, they were here on a regular basis,” she said.

The support of family, including Jennifer’s parents, her sister, and in-laws, helped get the Davis family through the difficult time. Jennifer also made sure to spend time with her other son Brandon and made sure he was able to see James. Brandon spent many Tuesdays visiting his half-brother and enjoyed playing in the “sibling watch” area of the NICU, a service provided by Child Life.

At almost 6 1/2 months of life, James was finally ready to get rid of all his tubes and wires. He was still having difficulty feeding, but was able to get much needed relief from tubes being around his face when he was switched from an NG tube in his nose to a gastrostomy tube (g-tube) in his abdomen. This way, nutrients could still be continuously delivered to his stomach.

“His mom was very committed to learning all about his feeding,” said Melissa Carmen, M.D., a neonatologist. “She became very NICU savvy and was always hands on.”

At 7 months old, James underwent his final surgery, his first where he was stable enough to go down to the operating room. Gitzelmann put his bowels back together and cleared up his scar tissue. The courageous little boy had been in the same NICU pod –C1—since the day he was admitted, almost 210 days earlier. James was often referred to as the “unit mascot.”

“Dr. Gitzelmann saved his life multiple times,” Jennifer said. “There are not enough thank yous in the world for James’ medical team.”

James familyFollowing the surgery, the family focused on getting James home. That meant Jennifer, essentially, had to learn how to be a nurse. She learned how to administer TPN (total parenteral nutrition), to calculate the right amounts with a scale, to change James’ dressings for his g-tube, and more.

After spending a total of four seasons and 10 months at Golisano Children’s Hospital, Jennifer and Richard brought James home. He sees a physical and occupational therapist at home several times a month, but he is crawling, loves scooting across the hardwood floors, and is always smiling.

The countless days James spent on a breathing tube led to severe oral aversion, but the Davis’ were thrilled when they were able to get him to start eating baby food in November 2014. Now 20 months old, James weighs 19 pounds and is growing stronger every day.  

“It’s incredible to see how far he has come,” said Jennifer. “At a certain point we had to stop ourselves from asking when he was coming home. The nurses that stood by our side, especially the C-1 NICU team, and all of James’ providers are the reason we are able to be home with him today. I always told everyone that I wasn’t leaving the hospital without being able to bring my baby home, and I did!”