Brainerd Dispatch/Steve Kohls
BAXTER -- It may seem a little odd, but one of the things Nate and Jessica Macejkovic are most thankful for this Thanksgiving holiday is being able to hear their son cry. And today, on Thanksgiving, watching him eat his mashed potatoes.
They're also thankful that 20-month-old Isaiah can laugh, walk, say several words and get into mischief that other little boys do at his age, like when he tries to climb up onto the open door of their dishwasher and stand up.
"The thankfulness never really stops," said Nate Macejkovic. "You think about it all the time."
Isaiah was born March 28, 2003, via C-section at Abbott Northwestern Hospital in Minneapolis, 14 weeks early. He weighed 1 pound, 15 ounces, and was 14 inches long. While nurses prepared the family for what Isaiah would look like when he was born by showing them photographs of premature babies, they said it was still incredible to see how tiny he was. His torso was the size of a pop can. He looked like a frog, with long tiny arms and legs that curled up around his frail little body.
Their 3-year-old son Jonah had been born 5-1/2 weeks early but at 5 pounds, 9 ounces, he was big compared to his younger brother. Isaiah wasn't breathing at birth and a team of medical professionals rushed him to the Neonatal Intensive Care Unit at adjoining Children's Hospital of Minneapolis. His parents decided before the C-section that Nate would go with Isaiah while Jessica stayed behind and medical staff tended to her after the surgery. Jessica had a brief look at her son after he was born. Once she was stitched up and stabilized, two nurses wheeled her in her hospital bed through an adjoining tunnel to Children's Hospital to see her tiny son.
"We were in a state of shock," said Jessica, as she and Nate spent four months in the hospital with Isaiah.
Every day was another struggle. Isaiah was repeatedly intubated to help him breathe, but this caused scarring in his esophagus. When he was about a month old, the Macejkovics heard him cry once when the breathing tube was out. It would be an entire year and four months -- in June last summer -- before they would hear him cry again. Isaiah had to be "bagged" dozens of times. It was frightening to watch their son gasping for air, especially when this would happen when he was home with his parents. At 2 months he was given a tracheotomy, which involved creating an opening directly into the trachea in his neck to help him breathe.
Nate tried to return to work as a media specialist at Lincoln Elementary School when Isaiah was in the hospital but that only lasted one day. He didn't feel right being back in Brainerd while his son was fighting for his life in Minneapolis. Jonah, who had been the center of their lives, lived with Nate's parents in North Dakota during those four months. This was hard, too, Nate said.
"You don't understand how much you miss home when you live in a hospital for four months," said Nate.
The couple became like recluses the first year of Isaiah's life. Isaiah required around-the-clock care. If his trach became plugged with mucus and he couldn't breathe, he would have only about four minutes before brain damage could occur because of the lack of oxygen. They had a health care professional who stayed up during the night by his bedside as he slept. The couple had to learn how to care for their son's trach and protect him from colds and infections. They felt constantly on guard, wondering when his sleep apnea alarm would go off again. They also had Jonah at home, too, and they felt horrible that they couldn't give Jonah the attention he should have had because of Isaiah's medical condition.
"This is the sweetest, best, most patient 3-year-old you could ever have," said Nate, as he held Jonah last week.
At one point, Jonah became Isaiah's hero. Jessica was home with her boys one day and nearly falling asleep on the couch because she had been up all night with Isaiah. The alarms suddenly went off, signaling that he wasn't breathing. She grabbed Isaiah and was about to clear his airway when she realized she was out of sterile water she needed to clean out his trach. Extra bottles were located downstairs in a closet but she couldn't leave his side or bring him downstairs. She asked then 2-1/2-year-old Jonah to do mommy a big favor.
She asked Jonah to go downstairs and get a bottle of water just like the one she was holding. The clock was ticking. She only had about four minutes until Isaiah could suffer brain damage because of being deprived of oxygen. Fortunately, Jonah knew where to get the water and brought it back upstairs for his mom.
"Jonah was my lifesaver that day," said Jessica.
On June 30, Isaiah underwent reconstructive throat surgery to remove the trach and widen his windpipe. While his vocal cords were partially paralyzed because of all the throat procedures he's endured, he's now able to talk, laugh and cry. He's been walking now for the past couple of months.
"This is a miracle," said Nate. "We've been so lucky."
An occupational therapist is working with Isaiah to get him to eat by mouth. Since eating and all the throat procedures he's endured have been traumatic for him, he's become orally averse. It's going to take time for him to get used to eating. He has a feeding tube that will be removed once he's able to eat consistently by mouth for several months.
While the family has been struggling through this ordeal, they have appreciated the support from family, friends and strangers who have helped them. Lincoln staff members held a benefit last year for the family, as did a few churches. Friends would show up with bags of groceries. Jonah's day-care provider came to the hospital with envelopes of money, donations from other parents who bring their children to Jonah's day care.
"Sometimes you feel so alone. You wonder what you did to deserve all this. And then you look at him," said Nate, of Isaiah.
Last year the couple's family members had Thanksgiving at their house, because it was difficult to take Isaiah out of the house with all the medical equipment. Everyone had to get their flu shot before they came over for Thanksgiving dinner.
This year Isaiah will be able to actually participate in the holidays. He doesn't like to eat much but he does love mashed potatoes, his mom said.
As for his health today, Isaiah is doing well. He is near the bottom percentile of the growth chart for children his age and he may be a little delayed because of his premature birth but he's improving every day.
"You learn how much you appreciate your family," Nate explained, of dealing with a family health emergency.
"You learn what's important," added Jessica. "You don't stress out about work because you know what real stress is, trying to keep your child alive."
Jessica has returned to her job at BISYS two days a week while Isaiah stays home with a health care aide. Once the flu season is over he'll be able to join his big brother at day care.
JODIE TWEED can be reached at firstname.lastname@example.org or 855-5858.
Brainerd Dispatch ©2013. All Rights Reserved.