Holden Thomas Graves



Jessica and Alex Graves were happily surprised when they learned she was pregnant last May.
The Bluffton couple had married in March, and already had a boy and a girl.
"After we got married, I told (Alex) I wanted another baby," Jessica said. "He thought I was crazy.
"We found out we were pregnant in May, and I couldn't believe it," she said. "I was shocked. We were both super excited and hoping for a boy because our little girl gives us a run for our money."
But that joy soon turned to concern.In August, when she was 12 weeks pregnant, Jessica started bleeding.
"I thought I was miscarrying," she said.But doctors told the couple their baby had a heartbeat and was moving.
She was sent home to rest. But the bleeding returned every other week.Then, in September, when she was about 17 weeks pregnant, the bleeding grew much worse.
She went to Hilton Head Hospital and learned her placenta was "low-lining" her cervix. In the next two weeks, she would have another episode and learn she suffered from placenta previa, a condition that makes it impossible for the baby to come out naturally because the placenta is covering the mother's cervix.
That diagnosis would mean a C-section was necessary.At 21 weeks, she went to Memorial University Medical Center in Savannah as the bleeding continued. Two weeks later, she returned to the hospital and was told she couldn't leave, that her water had broken.Physicians spoke to the couple about terminating the pregnancy. They explained that after the baby was born, they might not be able to save him. The pregnancy also put Jessica at risk, they said.."It hit us right there that we may not be able to go too much farther with (the baby) at that point," Alex said. "They didn't think he'd make it. We didn't think he'd make it pass 25 weeks."
They decided to keep the baby.They learned they were having a boy.
"We didn't want to find out because we had a boy and a girl, so we wanted to keep it a surprise, but we had ultrasounds every day to see how he was doing," Jessica said.At 27 weeks, doctors told Jessica it was time for the baby to be born."I'm freaking out," Jessica said. "Alex just told me he was on the south end of (Hilton Head Island), and I was like 'What? You have to get here!'"Alex arrived in just time to see his son born.
During the C-section, he tried to distract his wife with small talk.But she stopped him and asked him to just listen."Suddenly, we heard like the smallest cry," she said."That was the only time we ever heard him cry," Alex said.'He won't come out of this'Holden Thomas Graves was born Nov.18, 2018, at 1:48 p.m.
He weighed 2 pounds, 6 ouncesand was 14 inches long. He was intubated immediately so he could breathe, but the tube later was taken out when he began breathing on his own.A week later, his parents were told he was showing signs of chronic lung disease. The disease causes infants born prematurely to suffer long-term respiratory problems and often requires a ventilator to breathe.At 30 weeks, he was diagnosed with that disease and pneumonia.As Holden's stats continued to fluctuate and he was given drugs and other treatments, Jessica reached out to a neonatal intensive-care unit page on Facebook for help."A mom from Nationwide had just brought her son home after two years and told me, 'Your son sounds just like my son. You need to take him to Nationwide,'" Jessica said.Nationwide Children's Hospitalin Columbus, Ohio,has a unit dedicated to serving children with chronic lung disease. It has a 96 percent survival rate, Jessica said.She called the hospital, but doctors there would not consider Holden for their program until he reached 36 weeks old. The hospital measured his age as if he were still in the womb because he was born prematurely.Holden's doctors consulted with Nationwide, and following their advice, Holden's stats improved.But in the days that followed, they continued to fluctuate and Holden was at risk of organ failure."They specifically told us he wasn't going to come out of this," Alex said.The family then focused on getting Holden to Ohio.After insurance struggles, Jessica was on an airplane with Holden. Alex stayed behind to get their home in order and take care of their other children.For the entire flight, Jessica watched Holden's chest rise and fall with each labored breath.
"I always had it in the back of my mind that if I didn't get him there and he died here, I couldn't live with myself because I wanted to get him the best treatment I could," she said."And if he died there, then we did everything we could as parents."'We both let our guard down' Holden arrived at the hospital Feb. 19, and his vital signs improved significantly. "The first day we got there, Holden smiled at me," Jessica said. "I was like 'This baby can breathe!'"Jessica spent the first two weeks with Holden before she flew home to Bluffton so she could drive back with Alex and their two children, 2-year-old Harper and 4-year-old Houston.
The family stayed at the Ronald McDonald House next to the hospital.
For the next three weeks, Alex and Jessica took turns going to the hospital and taking care of their other kids. Before they went to sleep, they checked on Holden with a camera monitor mounted on his hospital crib.On March 23, Holden's physicians asked to meet with Jessica and Alex. During the meeting, they gave some great news and agreed with Jessica to give Holden a tracheotomy — a procedure where an incision is made in the neck to help breathing — so Holden could be more mobile by gettingrid of the tubes in his throat.
"I looked at the doctor and said 'I know you can't really tell me he's going to live, but I've heard it his whole life that he is not going to live.' He looked at me and said, "Your son is progressing, slowly, but surely, he's going to live.' "As parents, we always had that in the back of our head that our baby wasn't going to make it, but after that, I let my guard down and I was so excited to hear that he was going to live," Jessica said.
"We both let our guard down," Alex said.'Code blue'
Last Sunday, Alex returned to Bluffton to get the house in order, pay bills and pull their lives outside of the hospital together. He planned to stay a week in the Lowcountry before heading back up north to his family.
In Ohio the next day, Jessica put her children to sleep and called the hospital to check on Holden around 9 p.m.
The nurse said he was sedated, calm and wasn't overworking the ventilator. Jessica relaxed and checked on Holden via camera. He was sleeping, a sight that allowed her to settle into bed as well.
Minutes later, her phone rang."I shot up right away because I knew something was wrong," Jessica said. "(The nurse) said, 'We are doing chest compressions, and you need to get over here.'"
She rushed to Holden's room, calling Alex on the way. As she reached Holden's floor, she heard his room number called along with a "code blue.""At that point, I was like what happened? I just talked to them. He was perfectly fine," Jessica said."I walked to his rooms, and they had ... 35 people in his room. ... Everything was flatlined."As she stayed on the phone with Alex, doctors worked 45 minutes trying to save Holden.
She told them to stop and told her husband that Holden was gone."They called time of death at 9:45 p.m. Monday," she said. ".... Everybody was shocked."All of the tubes were removed, and Jessica held her son for the rest of the night. It was the first time he hadn't been covered withtubes and other medical equipment.
"I felt awful that she had to do that by herself," Alex said. "We had been through all of this together up until the last moment, and I wasn't there."Coming homeThe family came home to Bluffton this week.
On Friday morning, Jessica told her oldest child he wouldn't get to meet his little brother.
Like any 4-year-old, he didn't understand."He just said 'I want (Holden) to come home,'" Jessica said.
"God had a different plan for him," Jessica said. "He knew (Holden's) future. We didn't. ... We forever have an angel."
A celebration for Holden's life is at 11 a.m. April 4 at Sauls Funeral Home at 90 Simmonsville Road. All are welcome and encouraged to wear bright colors.
"It was a miracle to get four months with him," Jessica said. "... Never ever take a life for granted."