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A Lyncburg mom finally gets to celebrate Mother’s Day at home thanks to a innovative Vanderbilt surgery

{Editor’s Note: Last Mother’s Day, we interviewed Moore County mom Lacey Ray. At the time, she and her husband, Chris, were traveling back and forth from Lynchburg to the PICU at Monroe Carell Jr. Children’s Hospital at Vanderbilt where their son, Carter, remained after being born prematurely and in dramatic style just months earlier. We decided to re-interview this Lynchburg mom a year later to see how things had changed. To read the original article, click here.}

Lacey says big brother Jackson feels beyond excited to have his little brother finally at home. “Jackson loves laying beside him and playing, and Carter loves to just turn and look at him.  Before he came home, Carter only ever saw adults, so he’s amazed by his big brother,” she says. (Photo Provide)

By Tabitha Evans Moore | Editor & Publisher

It’s Mother’s Day and there’s no sleeping in for Lacey Ray of Moore County. Today, she’ll draw meds, give breathing treatments, and make sure vent tubes stay clean. She’ll listen for monitors, alarms, and the machines that keep her infant son alive. This is what life is like at her Raysville home with husband Chris, three year old son, Jackson, and 18 month old son, Carter, who only recently came home to Lynchburg after living in the hospital since his dramatic arrival on November 3, 2019.

The Ray’s story is the stuff of a TV drama. Lacey nearly gave birth to Carter on the side on Interstate 24. Thanks to quick thinking by her husband, and a lightening fast reaction from Murfreesboro EMS, Carter arrived safely in an ambulance on the way to Tristar Stonecrest Hospital in Smyrna. He was seven weeks early.

Thanks to genetic testing, the Ray’s knew Carter had Downs Syndrome at around 14 weeks. Carter was also born with a very rare form of esophageal atresia (EA), transesophageal fistula (TEF) Type B, and tracheobronchomalacia (TBM) – conditions that ultimately required reconstruction of the esophagus.

According to his team of doctors at Monroe Carell Jr. Children’s Hospital at Vanderbilt, it’s an extremely rare condition – one that is seen in about 1 in 4,000 U.S. births.

Doctors determined to get him home

In addition to his loving family in Lynchburg, Lacey says Carter has been blessed with a devoted team of doctors and nurses, who were determined for him to not only live his best life but also come back home to Lynchburg. That goal began to focus into a potential reality several months ago thanks to a innovative surgical procedure that used magnets to not only repair Carter’s collapsed airway but also reconstruct his esophagus.

A Vanderbilt surgical team led by Assistant Professor of Pediatric Surgery and Director of Advanced Minimally Invasive Surgery Dr. Irving Zamora used a new approach. According to Vanderbilt, the procedure required a compassionate use approval from the FDA and was the first ever use of the Connect EA – Magnamosis device in the United States.

Months filled with first for Carter

That surgical first has led to many others.

On April 27, after 542 days in the hospital, Carter Ray came home. He still has a trach and is vent-dependent but he’s now getting to do more and more typical baby things. He gets to play with his big brother, Jackson, and sit on his dad’s lap while they watch TV. During COVID, Vanderbilt limited the number of people who could visit Carter. Since he’s been home, he’s gotten reacquainted with his grandparents, and aunts since COVID stopped hospital visitations.

“He’s also rolled over for the first time (assisted by physical therapist), but is very close to doing it on his own,” says Lacey. “The trach makes it a little hard for him to figure out how to get all the way over, but he’s determined.”

Lacey says the biggest change is Carter since he left the hospital is his transition into being a typical baby. He cries when he wants to be held or patted to sleep. He’s also becoming a different kind of spoiled.

“The nurses at Vanderbilt definitely spoiled him,” Lacey says. “But he wasn’t their only patient, so he learned to self sooth a lot. Now he’s becoming spoiled like any other baby, and I couldn’t be happier. He deserves it.”

Since he’s returned to Lynchburg, he’s also gotten to know his big brother, Jackson, better and he could not have a bigger fan. Lacey says Jackson loves to lay beside Carter and just be near. She also says that Carter seem pretty impressed with his big brother.

“Carter loves to just turn and look at Jackson,” Lacey says. “Before he came home, he’d only ever seen adults, so he’s amazed by his big brother.”

Still not a typical two kid household

Despite the fact that they are all in the same place, the Ray home is still anything but typical.

“I’ve brought two babies home. Like any new mom, I was worried about Jackson when he came home … it’s natural, but it’s a totally different worry when you have a medically complex child who’s life is basically in your hands.”

Lacey says someone has to be awake at all times, so that they can hear if Carter is having a breathing issue. Because he continues to require a trach, Carter can’t cough up secretions through his mouth, like an average infant. Those secretions could block Carter’s airway and cause his oxygen saturation levels to drop, which could quickly become a life of death situation.

“You can’t trust an alarm or yourself to hear that there is an issue,” Lacey says. “Luckily, Carter has a good cough, so normally you hear him and know he needs helps.”

In addition to the always-on mommy instincts, Lacey also administers meds, gives breathing treatments, changes Carter’s trach, and uses an ambu bag to give him manual breaths if ever needed. She also handles dirty diapers, gas pains, a sometimes fussy baby, playing, cuddling, and all the other typical baby stuff.

Lacey says she knows there will be challenges moving forward because of Carter’s condition. For example, eating by mouth will come slowly in part because Carter spent the first year of his life bed bound and intubated with sedation.

“He couldn’t progress developmentally … who could have?” says Lacey. “But the doctors have never told me that Carter won’t be able to do anything, they have said it will take time. The hope is he will eventually get there when given time and lots of therapy.  As long as he’s given the opportunity, then we will help him do anything he wants, so he can be the best Carter he can be.

This year’s Mother’s Day

When we ask her about this year’s Mother’s Day plans, Lacey jokes that she’s really too exhausted for too much celebrating. Since they’ve returned home, the Ray’s have found nurses to help with Carter’s care during the day but they continue to struggle to find a nighttime nurse.

“Any interested nurses that have pediatric or trach experience, please contact Suncrest Home Health in Manchester and tell them you are interested in helping take care of my sweet boy,” she jokes. “But really being at home with my two boys is really all the present I need. Maybe I’ll get a nice nap.” •

{The Lynchburg Times is the only daily newspaper in Lynchburg. Covering Metro Moore County government, Jack Daniel’s Distillery, Nearest Green Distillery, Tims Ford State Park, Motlow State Community College, Moore County High School, Moore County Middle School, Lynchburg Elementary, Raider Sports, plus regional and state news.}

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