SALISBURY — At one point, Jennifer and Shane Kirk were told to say final goodbyes to Eli, in case their infant son didn’t live through the surgery facing him.
For a week after that operation, 2-month-old Eli survived with his intestines in a bag, which was attached to a silo outside his body and above his abdomen.
Nothing prepares a parent for that.
And how do you keep it together as your little boy, only 5 pounds or so, convulses in your arms? Eli had an eight-minute seizure one day while Shane was holding him.
“It’s not something I really care to remember,” Shane says. “There’s nothing you can do.”
Jennifer remembers it as “eight minutes of hell.”
In the first two months of his life, Eli Kirk had surgery four times. He dealt with life-threatening intestinal issues, blood clots, bleeding on the brain and infection.
Jennifer Kirk, who is afraid of high places, rode with Eli on the June day he was rushed by helicopter from Carolinas Medical Center-NorthEast to Levine Children’s Hospital in Charlotte.
For a month or so, she and Shane stayed at the Ronald McDonald House so they could visit with Eli every day.
Eli lost his belly button in one of the operations, and he has been left with a pretty wicked scar.
He also has to rely on a colostomy bag for about a year until doctors reattach his colon to his rectum.
Eli faces many other challenges in the months and years ahead. Doctors have warned the Kirks that he may be limited in his abilities to walk and talk.
From his premature birth May 16, Eli spent all his days attached to monitors and tubes, never leaving a hospital setting except for the helicopter ride. When doctors finally mentioned the possibility of going home, it made Jennifer Kirk cry.
She thought she would never hear the word “home.”
Eli has been back home in Rowan County for a couple of weeks now, and he’s steadily gaining weight, moving close to 10 pounds.
Shane has returned to work with Pike Electric, though Jennifer has lost her job — something that seems of secondary importance now, knowing how much care Eli will require.
The Kirks aren’t sure how to deal with the bills coming in. For an idea of how expensive Eli’s care was, the couple say, just his stay at Levine Children’s Hospital amounted to $255,000.
Three surgeries or procedures cost $16,000, and that doesn’t count the most complicated one.
The helicopter trip was $19,000, Jennifer says.
Eli also requires special formula — eight cans cost $500.
From previous relationships, Jennifer has a 4-year-old daughter; Shane, a 5-year-old son.
The couple married in February. Jennifer’s pregnancy with Eli was going well until about the 28th week, when her blood pressure went up.
Her protein levels later shot to dangerously high levels, forcing doctors to perform a Caesarean section. Eli was born at 30 weeks, weighing 3 pounds, 13 ounces.
“He was perfect,” Jennifer says.
Because he was premature, Eli was placed in the neonatal intensive care unit. Jennifer knew what to expect because her daughter, Kiera, had been born at 32 weeks and also had gone into the NICU.
During the first weeks, Eli was doing fine, feeding on breast milk — about a bottle per shift. He moved from an incubator to a crib and was weighing in at about 5 pounds.
On a visit to Eli June 14, Jennifer says she noticed his eyes were swollen, and when she and Shane sat with him, it seemed his oxygen levels were dropping. The staff reassured Jennifer that Eli was OK.
By the next day, Jennifer and Shane received an urgent call from the hospital. On their arrival, Eli’s appearance had changed dramatically.
“We walked in, and it no longer looked like my son lying in his crib,” Jennifer wrote in a journal. “I thought, this can’t be my son. His stomach was so swollen and hard to touch.”
Fearing Eli might need emergency surgery, doctors had arranged for the helicopter trip to Levine Children’s Hospital.
“They made us leave the room to get him on the ventilator,” Jennifer says.
At Levine, the surgeon said he wanted to delay an operation in case Eli would improve. The charge nurse reserved a hospital room for the Kirks, so they could sleep close by.
Around 4:30 a.m., Jennifer says motherly instincts told her something was wrong. When she walked into Eli’s nursery, his bed was surrounded by about 10 staff people.
“They had to put him on an oscillator instead of a ventilator, so they could give him more oxygen,” Jenifer says. “The sound that thing makes still haunts me. It sounds like a sledge hammer.”
Eli’s stomach was swollen and blue. His face had puffed up like a balloon. The surgeon feared Eli’s intestines might be dead, and Jennifer heard a nurse on the telephone demanding that the lab bring platelets, “that her baby was critical and not expected to live.”
Jennifer says the surgeon prayed with her and Shane as they stood over Eli’s bed. The operating room was set up in the NICU.
“He was so bad they couldn’t move him, so they brought the OR to him,” Jennifer says.
Not long into the operation, the Kirks received the good news that Eli’s intestines were alive but so swollen they had been pushing against his lungs.
Then came the days of visiting Eli while his intestines were hanging in a bag.
“He had the doctors and surgeons scratching their heads for a long time,” Shane says.
While Eli’s intestines were on the silo, they “rested” and a surgery was performed June 22 to put them back into the infant’s body.
The surgeon couldn’t make the closure of the abdominal muscle too tight over the still swollen intestines, so he placed mesh over the open wound and also employed a wound VAC — vacuum-assisted closure that provides negative pressure wound therapy.
It took Shane’s mention of Eli’s having trouble going to the bathroom at CMC-NorthEast that led to a rectal suction biopsy, which indicated Eli might have Hirschsprung’s disease.
Hirschsprung’s is a condition that affects the large intestine, or colon, and causes problems with passing stool. It results from missing nerve cells (ganglia) in the muscles of a portion of a baby’s colon.
Sometimes the cells are missing from only a few centimeters of the colon. Other times a longer portion may be affected.
Eli had a barium enema aimed at finding a transition zone — where the ganglia cells might be missing.
When those results were inconclusive, Eli underwent a full thickness biopsy, which was positive proof for the disease.
Because the barium enema hadn’t revealed a transition zone, the surgeon said he wouldn’t know until a new operation how much of Eli’s large intestine was affected.
It turned out to be only a small portion. The surgeon closed Eli’s wound VAC incision and created a temporary stoma for a colostomy bag.
An infection developed later around the incision. Today, back home, his “wet-dry” dressings have to be changed twice a day.
The bad news wasn’t over for Eli.
“He probably shouldn’t be here, to be honest,” Shane says.
At the end of June, Jennifer says, a cranial ultrasound revealed a blood clot in Eli’s sagittal sinus.
Jennifer says he had bleeding in the left frontal lobe and a small amount in his cerebellum.
“They say he will have some sort of disability — well, it is likely that he will,” Jennifer wrote in her journal, “and that he may never walk or talk.”
The Kirks are going with an Early Intervention program, hoping that several different therapies employed now will give Eli the best chances possible later on.
Eli came home July 24 for about five days before returning to Levine, because of his seizures. His brain activity was monitored at the hospital, and the Kirks learned he might be more susceptible to epilepsy.
Just one more thing.
At Levine, the Kirks say, Eli was known everywhere as the famous baby from NorthEast.
“The doctors said they had never seen a baby that had intestines dilated as large as his were,” Jennifer adds, “or a baby that got as sick as he did because of this.”
It’s been quite a year for the Kirks.
Jennifer has been worried about her father, Bill, who has colon cancer that has spread to his liver.
Only days after Eli was born, Shane’s stepfather died unexpectedly just hours after Shane and Jennifer had been to his home for dinner.
Then, of course, was the joy of having Eli, followed by the agony of seeing him go through so much.
The Kirks have kept an amazing attitude.
“I want Eli’s story to give someone a reason to believe,” Jennifer says. “We all worry so much over the little things, but my son had to fight just to breathe. Every day is a struggle for him.”
The Kirks already know Eli is a fighter. They see a personality forming, too.
“He’s a happy baby,” Jennifer says, holding him closely. “He just likes to stare at your face.”
Contact Mark Wineka at 704-797-4263, or mwineka@ salisburypost.com.