By Heather Michon |

Lauren didn’t get to hold her baby girl for more than one minute after she was born. “[She was] swooped up and taken away” Lauren recalls. “Then we didn’t get to see her for hours after that.”

All eyes were on the baby, who was born in critical condition.

The Discovery

An ultrasound at 30 weeks diagnosed Lauren and Matt’s daughter, Everly, with Congenital Heart Defects (CHD). Doctors discovered that Everly’s aorta wasn’t connected to the rest of her body, a condition known as interrupted aortic arch (IAA).

Uncorrected, the condition is fatal.

Lauren and her son, Jack (5), visit Everly in the CICU five days after her first open heart surgery in August 2017.

The discovery set off a scramble to get a team in place for Everly’s first surgery, which included inducing Lauren’s labor at a completely new hospital 60 miles from their home in August 2017. After delivery, the baby was whisked off to the neonatal intensive care unit (NICU) as her medical team prepared for her procedure.

Everly had her first open heart surgery at just three days old.

Lauren and Matt each got to hold their baby girl once before surgery. They didn’t get to hold her again until several days after the procedure.

Almost a year later, Lauren says, “I’m glad I had problems in my pregnancy.” Because other seemingly minor issues brought extra scrutiny, those ultimately led to the ultrasound that found the CHD.

It’s a break some babies don’t get. Symptoms of heart defects like Everly’s don’t always appear until after a valve that’s open in-utero closes shortly after birth. Without a diagnosis in the hospital, many babies with IAA would be at home with their parents by the time they would show symptoms.

“She would have come home and essentially looked fine, then all of the sudden she would have turned blue, started losing circulation and been rushed to the emergency room here that wouldn’t have been able to fix her,” Everly’s mom explains.

Matt introduces their son, Jack, to his 1-day-old sister, Everly, for the first time in the NICU before her surgery.

Unexpected Complications

Those first days and weeks in the NICU were “a little blurry,” Lauren admits, but she does recall the night early on when a nurse called to tell her: “One of the IV lines doesn’t look good.”  

Maintaining an IV line was crucial to ensure Everly was receiving the medication keeping her heart valve open until surgery. Her heart medication couldn’t mix with other IV fluids like the lipids and insulin she also needed, so her medical team had to find another viable IV site.

The nurse called back later to inform the family that they had found an IV site in the baby’s foot. The IV stayed in place through her surgery on August 7 and was removed on August 9. That’s when even more problems emerged for baby Everly.

Everly’s IV infiltration wound on August 22, 2017, a few days after she was released from the hospital.

“All of the sudden, this huge wound appeared, bright yellow,” her mom remembers. “And it just kind of got worse from there.”

Her peripheral IV had infiltrated, leaking fluid out of the vein and into the tissue of Everly’s tiny foot.

Minor IV infiltrations can resolve in as quickly as a few days. But more severe ones, like Everly’s, can take much longer to heal.

After treating the IV infiltration wound with several topical medications, it was still large, yellow and, more importantly, causing Everly a great deal of pain. Her medical team called in a plastic surgeon.

“I think it’ll turn out ok,” Lauren remembers him saying. He was the first of several specialists who would look at the wound over the following months.

Finding the Silver Lining

Although Everly’s family is extremely grateful this was the biggest complication she had during her first surgery, dealing with their baby’s IV infiltration wound was anything but simple.

Everly's IV Infiltration Wound

Everly’s IV infiltration wound in October 2017, months after surgery.

“It’s a big deal to me, because I’m the person who changed the dressing two times a day while she screamed,” her mom says.

Nearly a year and a second open heart surgery later, and Everly’s right foot is still visibly larger than the other.

There’s no way to say if it’s going to impact the 10-month-old’s ability to start to walk.

“She appears to have good range of motion right now and can pull to stand, so fingers crossed it won’t impact physical developmental progression,” her mom shares.

While the most important thing to fix is Everly’s heart, her mom does wonder if the IV infiltration wound will impact her daughter long-term, even in smaller ways.

What if her feet are never the same size? And she can’t splurge on a nice pair of shoes because she has to buy two pairs. What if she has a large scar and is embarrassed when she gets a pedicure with friends?

Lauren says that they’ll cross that bridge when they come to it – for now, they’re just grateful that she’s alive. It’s all about perspective.

Jack (6) and Everly (8 months) with their family a few months after Everly’s second open heart surgery. Photo: Paint the Sky Photography- Bethany Babineau.

“This is small comparatively when her heart is literally life or death. We’ll work to find beauty and strength in the scar(s) because they are a symbol of her will to fight and that she’s alive,” she says.

Everly also suffered an infiltration of a central line catheter in December 2017. That one, thankfully, resolved more easily than her foot.  

They don’t have the best IV luck, as her mom puts it.

Looking to Everly’s Future

Like many parents with children suffering from congenital heart defects (CHD), Lauren’s days are filled with checklists and doctor visits and concerns.

Everly in the hospital with a small virus at the end of April 2018, wearing a hospital gown designed by her older brother, Jack.

Everly also has a large hole in her heart, combined with some smaller defects. She’s already had two open heart surgeries, with her third open heart surgery scheduled for July – and even more to come as she gets older.

Lauren says one big lesson of Everly’s hospital experiences is how important it is for parents to be their children’s voice. She recommends finding a team of doctors and nurses who value you as an integral part of the team and decision-making process.

“We are so lucky to have a team that makes us feel like our thoughts and insight matters. They really listen to us.”

When it comes to IVs, she’s now much more involved in the process and checks all of her daughter’s IVs carefully. And when she sees something she’s not comfortable with, she alerts the nurses immediately.

To any parent with a hospitalized child, Lauren says, “Your baby can’t talk. They can’t say that it hurts.”

Her biggest piece of advice? “Do not feel bad advocating for your child. You are the person who’s there for the long haul, so you see the changes (or lack of changes) from day-to-day and month-to-month.”

 

Everly playing at home in May 2018.

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