‘Baby Ben’ healthy, growing as he turns one

Now weighing in at 15 pounds and three-and-a-half ounces, “Baby Ben” has a lot to celebrate with the arrival of his first birthday.
Born Nov. 10 last year, tiny Benjamin Marr arrived 15 weeks early and weighed just one pound, four oz. He would spend the next months in hospital in Winnipeg until finally coming home to his family in Emo in the spring.

“He’s thrived since we’ve come home. He’s truly amazing,” his mother, Jennifer Marr, enthused. “Doctors, when we go to Winnipeg, they can’t believe he’s the same little boy that we left with.”
While Ben still heads back to Winnipeg for regular check-ups every one or two months, there has been good news and progress. He’s officially off of his oxygen, and no longer needs to see his heart specialist.
One birthday present he’ll be getting is a pair of glasses to correct his nearsightedness. The glasses will open up a whole new world for him, said his mother.
Earlier on, there had been concerns about both Ben’s hearing and vision—to the point that doctors said he might even be blind. So the diagnosis of nearsightedness, and with some peripheral vision loss, is a relief, said Marr.
“His daddy wears glasses, I wear glasses, so I’m like ‘That’s nothing!’ That’s so okay with us. That’s the least of his problems,” she remarked.
Despite tests, she added Benjamin’s hearing remains an unknown at this point. They do know he can hear, but it depends on the pitch, she explained.
For example, Ben can understand his mother if she speaks to him. But if she changes her voice, he doesn’t recognize her.
At this point, a hearing aid isn’t recommended by doctors.
“It’s such an unknown territory. They always say they’ll test him again when he’s corrected a year,” she explained. “Sometimes they say it just changes as he matures and grows . . . so everything’s a waiting game.”
Right now the biggest challenge that remains for Benjamin is eating, she noted.
Anything he takes in by mouth runs the risk of running into his lungs due, in part, to a paralyzed vocal chord, Marr explained. Her son also has really bad reflux, which means he doesn’t tolerate feeding very well and throws up quite a bit.
Ben currently is being fed through a gastric feeding pump—a tube that’s hooked up directly to his stomach.
He gets a morning feed for about two hours, is given a two-hour break, then is hooked up again around 11 a.m. for six more hours. After another two-hour break, he’s hooked up again to the feeding pump until just after midnight.
“It just goes nice and slow for him. He doesn’t tolerate it going fast,” Marr explained.
“We were giving him breast milk and formula,” she added. “We’ve now switched to just formula that is already half-digested for him. It stinks to high heaven, but it’s working for him. He’s not throwing up as much.”
Because of the difficulties with feeding, Ben’s weight gain—while steady—has been slow, his mother admitted.
“We’re just trying to figure that out so he can start gaining just a little bit faster,” she said. “It’s been pretty steady, it keeps going up. It’s not very often that it goes down, so that’s a good thing.”
Alongside a big party on his birthday next week, Benjamin also will be in Winnipeg so doctors can run some tests on his throat.
“[Doctors] wanted to wait until he was a little bit older to see if it was going to fix itself, or if he was going to have a little bit of a surgery,” said Marr.
If surgery is needed, it wouldn’t be anything major, she added, just “putting some fat in there to beef it up a little” to prevent choking.
Upon arriving back home in Emo with Ben, there were some late-night trips to Fort Frances for medical help so the one big step the family has taken is moving to Fort Frances.
“It was kind of like, ‘We need to be closer to the hospital, we need to be closer to his medical supplies, all of his medicines and stuff like that,’” she explained. “So it just made sense to be here.”
As well, being in town gives Marr a chance to run errands with Ben for a few hours every day if needed.
“Because he eats for six hours at a time, it’s really hard to get anything accomplished because he can’t go in the car seat during that time, and then he needs to wait at least half-an-hour after eating so that he doesn’t have reflux and throw up,” she explained.
“So now at least with his two hours off, I have an hour-and-a-half to run and pick up formula, or pick up something like diapers or whatever we need.”
Ben also has started physio and occupational therapy.
“He has great leg muscles, but he doesn’t have great upper muscle, so he isn’t sitting up by himself yet and he’s not trying to crawl,” said Marr. “But he does roll over, does things like that, grabs at his toes, those kinds of milestones.”
Being born so prematurely means Ben hasn’t reached the milestones other babies hit by their first birthday.
“We’re just trying to do the catch-up,” she said, noting doctors say most premature babies catch up completely by the age of two.
And Marr said Ben has become “a very, very busy boy”—even working on his first tooth.
“He loves his jolly jumper, loves to just be going, going, going,” she said. “He doesn’t sleep very much through the days anymore. He’s pretty much up at around 6:30 in the morning and has a half-an-hour catnap, and goes to bed at about six, 6:30 at night.
“He’s a little go-getter,” she added. “I always say that he’s had enough of laying, enough in that old incubator.
“He’s my little hero.”