Christmas miracle: Two-year-old Elijah Steffen, born weighing 13 ounces, celebrates his first Christmas at home
By Catherine Godbey
For the Enquirer
The beeping and buzzing of 2–year–old Elijah Steffen’s ventilator sounded through the den where a Christmas tree decorated with white lights, pine cones and angels stood and stockings embroidered with initials hung from the mantel.
On the floor, Elijah rolled on his back, a tube snaking from his neck to the ventilator, and clapped his hands, mimicking his 6–year–old sister Nyla.
“Last year and the year before, I didn’t care about Christmas. I didn’t care about anything. I didn’t want to celebrate,” Elijah’s mother Kelsey Steffen said. “I have been so excited for this Christmas because I get to be home with my husband, daughter and son. This is something I have dreamed of. It has been a long and hard journey to make this dream come true.”
That journey began Dec. 2, 2021, when John and Kelsey left their home in Eva for Madison Hospital.
“I had been having terrible migraines for three days. That morning, I told John I couldn’t take it anymore and we had to go to the hospital,” Kelsey said.
Although they typically went to Cullman for their medical needs, Kelsey decided to go to Madison.
“I don’t know what made me think we needed to go to Madison. I just knew,” Kelsey said. “We left our home with just the clothes on our backs. We never in a million years would have thought we were going to have our baby that day.”
At the hospital, the medical team ushered Kelsey, who battled high blood pressure while pregnant, into an emergency room. As the medical team tried to lower Kelsey’s blood pressure, the doctor began preparing the Steffens for the possibility of an emergency C-section.
“I was like, doctor, I am six months pregnant, you have to do everything you can so we don’t have this child today,” Kelsey said. “I had never known someone who had a baby at 24 weeks. I was scared.”
In the hospital room, machines monitored Kelsey and the yet–to–be–born baby. Every time Kelsey’s blood pressure would even out, the baby’s heart rate would drop.
“We were never even. We were killing each other,” Kelsey said.
The nurses began repeatedly asking John and Kelsey what they planned on naming their son. The Steffens, who were deciding between John Richard V and Elijah, opted for Elijah — after the Biblical figure who performed miracles.
“The doctor finally said we were going to have this baby. I was crying and I was so frightened, but then I looked at John and I had all the confidence that we could do this. I knew he would be right there beside me,” Kelsey said.
Elijah was born measuring 11 inches long and weighing 13 ounces — three ounces less than a pound. Think about the weight of a coke can, water bottle or can of tomato soup. The medical team questioned whether Elijah would survive.
“I was in the waiting room when they brought Elijah out. All I could see at first were his hands and a little movement under the blanket. They asked if I wanted to see him. Of course, I did. He looked like a chick that first hatches. I stared at him for quite a while before they loaded him in the ambulance to take him to Huntsville Hospital for Women and Children,” John said.
For the first three days after Elijah’s birth, John juggled work with visiting Kelsey at the hospital in Madison and checking on Elijah in Huntsville. When the hospital released Kelsey, she headed straight for Elijah.
“That was the first time I saw him, three days after he was born,” Kelsey said. “When I saw him, I was like, that’s not my baby, that’s an alien. He was so tiny and fragile.”
“Those first stages of his life were very difficult,” John said. “It was like we would take one step forward and then two steps back.”
On Jan. 2, 2022, John and Kelsey were able to hold their son for the first time.
“It was the best feeling ever. That was the first time I felt close to him. He literally fit on my chest,” Kelsey said, motioning from her neck to the middle of her sternum. “Usually, they only let you do skin-to-skin for 30 minutes, but he tolerated it for two hours. I remember his tiny hands rubbing and tapping my chest. He still does that to this day.”
After three months at Huntsville Hospital, Elijah, who had a hole in his intestines at birth, was diagnosed with chronic lung disease and pulmonary hypertension, had a gastrostomy tube inserted in his stomach for nutrition, and suffered multiple broken bones and fractures due to his fragility — “Something as simple as just changing his diaper could result in a broken bone” Kelsey said — was transferred to Children’s Hospital of Alabama in Birmingham.
“The nurses and doctors at Huntsville were amazing. We are so thankful for them, but they had reached the limit of what they could offer in care for him,” Kelsey said. “Throughout this whole journey, we have said that we didn’t care what it took, whatever was best for Elijah is what we were going to do. We would’ve taken him all the way across the country if we had to.”
The decision to transfer Elijah to Children’s Hospital meant Kelsey, who was able to visit him every other day while in Huntsville, could only visit him on the weekends.
“I would have done anything to be with my kid every day, but those just weren’t the cards we were dealt,” Kelsey said. “I had to leave Elijah in God’s hands. I had no other choice. We still had our bills to pay. Even though I couldn’t be there, I was calling the nurses multiple times a day to check on him.”
John and Kelsey made sure the nurses felt appreciated. They left notes for them, got them small gifts and constantly thanked them.
“They were taking care of our child. We needed them to know how valuable they were to us because we had to let go of something so valuable to us and allow them to take care of him,” Kelsey said.
The weekends Kelsey spent at the hospital decreased to one day a week so she could spend more time with her stepdaughter Nyla.
“We were so laser–focused on Elijah that Nyla started acting out a little. Even though John’s parents were taking such good care of her, she needed us, too. I had to make a choice, and it was difficult one, to split the little time I had with Elijah so I could have time with Nyla,” Kelsey said. “We would have dates at Texas Roadhouse, our favorite restaurant, or we would eat Mexican.”
John and Kelsey remember intimately the first time Nyla met Elijah.
“She was so still while she held him. She stared at him and rubbed his arms and legs. He fell asleep right in her arms,” Kelsey said.
Nyla, along with John and Kelsey, would pray nightly for Elijah’s healing, which, at times, seemed in doubt.
During their monthly meetings with a team of six doctors about Elijah’s care, they learned in detail the challenges facing their son.
“In some of those meetings they thought he wasn’t going to make it because he had chronic lung disease and hypertension. Every time his lungs wouldn’t work properly, his heart would overwork. It would cause him to go into hypertension crisis, which could cause him to die. He was on that roller coaster ride many times,” Kelsey said.
To ease his breathing, the medical team performed a tracheostomy in October 2022. Elijah also underwent multiple eye surgeries to repair his retina and correct his vision.
In April, when the hospital moved Elijah to the 10th floor, John and Kelsey felt relief.
“To me, getting to the 10th floor was the biggest goal. I knew that was the last stop before we would get to go home. Once we got to the 10th floor, that was when, for the first time since Elijah was born, I felt relaxed,” Kelsey said.
Before John and Kelsey could take their son home, they attended a 12-lesson training program on how to use Elijah’s medical equipment.
“I thought I knew about the ventilator and the trach, but when we started training, I realized I knew nothing. They wanted you to be prepared for what to do in an emergency. All I could think about was Elijah was going to have an emergency and I wasn’t going to know what to do,” Kelsey said.
In late August, Elijah came home.
“I am so thankful for everyone that God put in our paths at the hospital. The nurses loved on him and on us so much. As he gets older, I will tell him all about the nurses that took care of him. They are part of why he is who he is,” Kelsey said.
His first night at home, Elijah slept through the night. John and Kelsey did not.
“Those first days were rough. I was very scared, but Elijah did great. He acted like he had lived here his whole life,” Kelsey said. “The nurses had told us that he was pretty good at sleeping through the night. Every now and then he’ll get up around 4 a.m. and do a little song and dance and then go back to sleep. Literally, he sings and dances.”
Since coming home, Elijah has started crawling, has shown interest in standing and has been weaned from his oxygen some. He undergoes occupational therapy, physical therapy and speech.
“All of the doctors and therapists who have seen him have been amazed at how well he is doing. They said he is thriving,” John said.
John and Kelsey love watching the relationship forming between Nyla and Elijah, who now weighs 23 pounds.
“That has been amazing. They love each other so much. She is so loving and so protective of him and he is just so happy. He has the joy of the Lord,” Kelsey said.
For Kelsey and John, witnessing Elijah’s journey has led them to God.
“I grew up in the church, but I also ran from the church,” Kelsey said. “My relationship with God before I had Elijah was not there. Having Elijah forced me to lean on God. One day, after trying to do everything myself, I said, ‘OK God, I have no other choice.’ Once I gave it over to God, things started happening.”
“I was an atheist. I didn’t believe in God. I believed in science,” John said. “But through the little miracles I have seen through Elijah and other children at the hospital, I believe now. There’s definite proof he is around us everywhere.”