Baby Levi's parents share ups and downs of their first year of marriage

A Manitoba couple who just celebrated their first anniversary has already been through more than many couples will face in 10 or 15 years of marriage.

Last week Tuesday Jayden and Sonja Guenther of Steinbach finally flew home after being in Toronto for five unexpected months. Their son Levi, transferred from a Toronto hospital, flew home with a transport team one day later.

Coming back to Manitoba happened quicker than expected for the couple.

"We went to the hospital, expecting it to be a normal day. Cardiology was going to come talk to us about Levi's new heart condition. He came in and told us it was good for us to get transferred."

This meant coming back to Manitoba, transferring Levi to Winnipeg Children's Hospital. While the couple is elated to be back in a familiar province, it'll be one more week before they can see family or friends, due to travel restrictions with COVID.

Jayden says, "We've waited five months, what's another week."

The day Jayden and Sonja flew back to Manitoba was their first anniversary.

Recalling all that the couple has gone through in the past year, Jayden says, "It's been challenging. Especially finding out that we were expecting, which was not planned. Then within three weeks finding out it was twins. Being flown to Toronto was a huge hit."

Sonja found out about halfway through the pregnancy that the boys had Twin-to-Twin Transfusion Syndrome (TTTS) and they needed a pre-natal operation, which they did in Toronto. Afterward, the couple was supposed to fly back home after being there for a maximum of four days.

Instead of flying home, Sonja went into emergency labour and birthed her twin boys at only 23.5 weeks gestation.

"They rushed us into delivery and we were thinking, what is happening? It was three hours later she gave birth to both boys. They had to be on oxygen so they were rushed out. Even after we went to see the boys, we were in the recovery room, sitting there in shock."

While little Lucas fought hard, he passed away at only three weeks old.

Jayden says, "Obviously the loss of our one son was tremendously hard. But I would say it's definitely made us come out stronger together as well as our relationship with God. He's been tremendous to us this whole entire time."

The couple says that their faith has been tested and grown over the past few months.

As Jayden remembers the time he had with Lucas, he says, "Looking back at it now, for those three weeks, he just fought every single day. There's a tremendous amount of strength behind his three weeks. I think about it and it's quite encouraging."

The couple spent a total of five months in Toronto, from what should have been a couple of days, and endured the loss of one son, while the other has been fighting a hard battle since.

"At first we were staying at a hotel which was extremely expensive. Then one of the elders at Emmanuel Church in Steinbach was able to find a place for us to stay at. A friend of a friend at Emmanuel. She was kind enough to rent out her basement suite to us for a few months."

On days when things were not looking good for either twin, instead of taking the 40-minute subway ride to the house, they stayed at a nearby hotel.

"There were definitely nights where it was a little frightening for both the kids," says Jayden.

"Then we were able to go to the Ronald McDonald House which was a five-minute walk from the hospital."

Just over this past weekend, the doctors took Levi off his breathing support, which means he is breathing on his own. He is also able to eat and digest formula, which had been a big struggle previously.

"In the beginning when they started feeding him in Toronto, they would try one millilitre (ml) at a time. He would get super sick off of it because his digestive system couldn't handle it. Now he's on full feed which is what a normal baby would be drinking at full term. Right now he's on 53 ml every three hours."

As of yesterday, Levi downgraded to a regular ward, moving out of intensive care. This is another step closer to him coming home. The next step will be learning how to properly take care of Levi on their own.

"Levi was recently diagnosed with pulmonary vein disease. It when the four veins that lead from his lungs to his heart eventually narrow and then shut. Once too many of them shut, it can lead to heart failure. Right now there is no treatment for it. Before it gets worse it could be months or years."

The couple is asking for prayer over this new information.

Jayden says, "We're definitely in need of a miracle. Please pray that God can save our baby boy once again."

While the couple has faced so much in their first year of marriage, they're also filled with gratitude.

"We are hugely grateful for all the support and love we've gotten from family, friends, and the community itself. It's really quite mindblowing."