Caring for Ella: MFH Hospice workers, mom remember baby | Health & Fitness

Stephanie Baustian remembers when the neurologist cried.

Baustian had taken his 4-month-old daughter, Isabella, to the Omaha specialist after the baby started having seizures.

Isabella (Ella for short) was a small baby girl with big blue eyes and long eyelashes. She had a cute little baby nose and dark hair. She was precious to her family.

“She was our perfect little princess,” Baustian said.

Baustian remembers the day he took his princess to the neurologist.

“I will never forget that day, because a doctor never cried in front of me,” the Fremont woman said. “Usually they are pretty tough.”

But the then-pregnant neurologist had bad news for Baustian.

She was diagnosed with early childhood epileptic encephalopathy.

“She explained that the diagnosis was terminal,” Baustian said.

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Baustian learned that most babies diagnosed with this rare condition did not live beyond infancy. Few lived beyond 2 years.

It took a while for the news to sink in, and at first Baustian didn’t like the idea of ​​the hospice.

Since then, she has come to deeply appreciate the hospice team at Methodist Fremont Health, who took her through a difficult journey and continues to support her even a year and a half later.

Looking back, Baustian’s pregnancy with Ella was different from that of their children: Daniel, 13; Columbus, 9; Wyatt, 8; and Charles, 5.

Baustian was sick the whole time he was pregnant with Ella.

“She wasn’t very active during the pregnancy,” Baustian said of Ella, “but we didn’t really have any indication that anything was wrong.”

She was born on January 27, 2020. The delivery went smoothly. She was so calm and hardly cried.

“She had the slightest cry, but I thought that was a blessing, because I have four children,” Baustian said.

Time passed. She struggled to gain weight and, at 5 weeks old, she had lost about a pound below her birth weight of 6 pounds, 4 ounces.

Then he had his first seizure.

She was sent to an Omaha hospital and diagnosed with epilepsy before receiving a terminal diagnosis: The first case of COVID-19 was found in Fremont the same weekend.

Baustian’s mother, Helene, who lives in Fremont, may have been on speakerphone when Baustian got the news, but the young mother was alone when she learned of Ella’s terminal diagnosis.

“I didn’t really notice,” said Baustian, who navigated life with his children during the pandemic.

At the time, they lived an hour and a half away from another family.

She entered the hospital for the second time in May, and Baustian and her children would be moving from Fullerton to Fremont to be closer to family and the Omaha hospital.

Baustian, who had worked in nursing homes, was familiar with palliative care in that setting. But at first he didn’t like the idea, when it came to his baby.

“I had doubts because I knew it meant the end of life and I wasn’t prepared for it. She didn’t want to be there yet, where that was it, she was done,” Baustian said.

Baustian accepted the idea when Ella was hospitalized for a month in September 2020.

Ella said the neurologist explained to her that eventually Ella would need to be put on a ventilator. If that were the case, she would be hospitalized or in a facility almost all the time.

“I didn’t want her to live her life in a hospital,” said Baustian, who wanted Ella to be home with her family.

Collette Heiman, a registered nurse and case manager at MFH Hospice, remembers being asked if they would care for Ella.

MFH Hospice had not provided such services for a baby, or even a child, before.

“I don’t even remember having a patient under the age of 19 in hospice care,” Heiman said.

Stephanie Phillipson, a hospice social worker with MFH, had also never had a pediatric hospice patient.

Their youngest hospice patient was 39 years old, and most were 70 or older.

Phillipson pointed out the difference of working with older patients.

“Most of the time, the family is prepared for this,” Phillipson said. “The patient is prepared for this, whereas with a child, even though Stephanie knew that Ella was not going to have a long life, she is still her baby.”

The age difference didn’t stop the MFH hospice team from helping Ella and her family.

As a mother of four and a grandmother of five, Heiman realized that Baustian was about the same age as her children.

“That’s what drew me in, what made me go, ‘yes,’” Heiman recalled.

The palliative care team investigated Ella’s case before visiting the Baustian family.

“Once Stephanie Phillipson and I saw that family, that was it,” Heiman said. “She (Ella) had our hearts. We just knew we were in the right place for the right reason at the right time.”

Members of the hospice team discovered what the family needed and helped Baustian navigate goals for the type of care Ella would receive.

Heiman educated Baustian in medicine and other aspects of Ella’s care.

Even while Ella was in the hospital in September, the team arranged for Baustian and her children to stay in an Omaha hotel for a couple of days.

Phillipson and Baustian had discussed taking family photos, and the social worker made arrangements with Amanda Fish Photography.

When Ella’s condition began to rapidly deteriorate, Phillipson contacted the photographer to take pictures one afternoon in October.

“He dropped everything to go out and do this,” Phillipson said.

Phillipson stayed with Ella while her mom got ready and the baby’s grandmother bought special clothes for her siblings. Phillipson located a Doppler heart monitor from MFH colleagues to record Ella’s heartbeat as a family memento.

After the photos, the Baustians celebrated Wyatt’s birthday and then other family members went home.

Baustian had told Ella that it would be fine if she went, that her mom and siblings would be fine.

She held Ella all night and fell asleep with the little baby on her chest.

“I woke up and she had passed away. She took her last breath around 3:20 p.m.,” Baustian said.

She passed away in her mother’s arms on October 15, 12 hours after the family photos were taken.

“I held her for a while after she passed away,” Baustian said.

Baustian called Heiman, who came to the house.

“I think he cried as much as we did,” Baustian said.

Baustian said Heiman sat down with the family and put the medical supplies away so they wouldn’t have to see them.

Heiman remembers seeing the mother with her baby.

“He was playing music and just holding her like she was asleep on his chest,” Heiman said. “The hardest part was hearing her oldest son cry from his bedroom.”

Heiman also remembers how difficult it was to deliver the baby to the funeral director. She cried when she left the house.

Phillipson, who is also a mother, recalls this as the most emotional case she has ever had.

“I remember, between visits, I would get in the car and cry,” he said.

Heiman knows the loss that comes with hospice.

“When someone is in hospice and someone dies, everyone loses,” Heiman said. “I lose a patient. You lose a friend. no one wins, everyone loses. But in my heart I knew I wasn’t going to lose touch with Steph. I felt like, ‘She’s family.’”

Baustian said the hospice team gave her children extra gifts for Christmas. That December, they donated diapers in Ella’s name to a charity. This year, diapers were donated to the Fremont Sixpence, which helps local families.

The Baustian family remains in contact with Heiman and Phillipson.

Baustian does little things in memory of Ella. She donates diapers.

This year, he paid for someone else’s birthday cake.

Ella and her children have a bright pink Christmas tree, covered with Ella’s bows and ornaments that the boys have chosen, since they couldn’t spend Christmas with her.

The Doppler recording, placed in a teddy bear, remains valuable to the family.

“Having that heartbeat makes me feel like she’s still around,” Baustian said. “It’s kind of a special thing. The boys will listen to it often.”

Baustian shares kind words for the MFH hospice team.

“They were my comfort during my storm,” Baustian said.

Phillipson has been amazed at Baustian’s strength, and Heiman has encouraged her to become a nurse.

Hospice workers cherish fond memories of Ella.

“She was so adorable,” Heiman said. “She was beautiful. She was an angel here on earth.”