Motherhood takes Cedar Rapids native Emmy Lee to the highest highs and lowest lows

CEDAR RAPIDS — Emmy Lee gave life twice to her daughter.

The first was when Crimson Lexus Lee was born to the Cedar Rapids native the evening of Nov. 22, 2023. The second came in early January, after the new mom made two trips to an urgent care and two different emergency rooms by her home near Plano, Texas, insisting something was wrong with her baby.

Something was very, very wrong. Crimson wasn’t just running a fever with a diaper rash. On Jan. 9, she was diagnosed with Group B strep meningitis — bacterial meningitis — as well as sepsis.

The admitting doctor and an ER doctor at the Plano children’s hospital gave the frightened parents the diagnosis, telling them Crimson was “extremely sick,” and this was going to be “a long journey.” So father Cody Lee went back to their home to pack for the stay. While he was gone, both doctors returned to talk with Emmy.

“They sat me down and they said, ‘This is an extremely difficult conversation that we’re about to have with you, but we need to have this conversation.’ And they said, ‘Your daughter might not make it through the night. She is extremely sick. We are giving her the best medication that we possibly can. We have gotten Infectious Disease involved to figure out what this type of meningitis is, and here’s the regimen we are going to do. But the next 48 hours of your life are going to be the hardest 48 hours you’ll ever go through.’

“And they were not kidding,” Emmy told The Gazette. Pockets of infection were forming on the baby’s brain, sending her into seizures and stopping her heart.

Journey begins

The world stopped in that moment for Emmy, 30, and Cody, 31, who live just north of the Dallas metro area. Their happy ending would be a long time coming, but it’s finally arrived. Crimson went home from the hospital Feb. 22.

“Crimson is doing great,” said Emmy, who grew up in Cedar Rapids as Emmy Hein, before moving March 14, 2022, to Texas. She met Cody Lee there, and when they discovered they were pregnant, moved up their wedding date to May 14, 2023. They will repeat their vows for family and friends on their original date, this Nov. 30.

“(Crimson) is thriving, she is loving life,” Emmy said by phone last month. “The happiest little girl you would probably ever meet. The (most) stylish little girl you will ever meet, with all of the clothes and the bows and the sunglasses that she has.

“She’s doing well. We don’t need what they call in Texas ‘early childhood intervention,’ which is physical therapy, occupational therapy and speech. She is meeting or exceeding every milestone that they test for,” Emmy added, and is doing so well that she’s on a six-month schedule for retesting. She also has a team of neurologists watching her closely.

“She’s doing fantastic,” Emmy said shortly before Crimson turned 5 months old. “ ... She rolls over by herself, which is huge. She’s holding her head up, as she should be, and she is currently really trying to hold onto her bottle — she’s so close.”

The family is sharing their journey on Facebook, with glimpses on Emmy’s page and more in-depth information on a private Crimson Strong page during the worst of the ordeal. Facebook posts serve as a journal for Emmy, and a way for her to inform friends and family.

They could see Crimson laughing for the first time on March 10, as her daddy made silly noises while holding her on his lap. On May 4, she made faces as she tried her first bites of baby cereal.

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Facing the unknown

That’s a far cry from Emmy’s Jan. 12 Facebook post where she shared: “It’s all unknown but she might have seizures the rest of her life. She might not talk ever. She might not walk ever. She has abscesses on her brain that may respond to antibiotics and they might not. If they don’t, well this team can go in and remove them if they need to. This is going to take longer than any of us expected. We are overwhelmed and we have no idea what life looks like for us but what we do have is her. She is our rock and she is keeping us going.”

Crimson, then 7 weeks old, had just been transferred to Children’s Health in Dallas, 71 miles from home, for specialized care.

She will be six months old on May 22, and is heading for Iowa on Wednesday to meet more relatives.

She isn’t completely out of the woods. She may be on anti-seizure medications the rest of her life, and while she does have some scar tissue on her brain, the side effects from the infection could affect her vision, hearing, movement or speech at any time. But her parents have relaxed enough to begin planning for another baby.

They wouldn’t be where they are today if not for Emmy’s persistence, after being sent home with a diaper rash cream and Tylenol twice to counter what was perceived to be an allergic reaction. More trips followed each day, until Crimson finally was admitted to Children’s Health in Plano.

“A couple of more days and Crimmy would have been dead,” said Sheri Sacks, Crimson’s main nurse at Children’s Health in Dallas, where the family was sent for more extensive care after a brief stay at the Plano sister facility.

“Had Emmy not been so persistent and continued to bring her back and say, ‘There’s something wrong with my baby. This is not right.’ Had she not done that, we wouldn't have Crimmy. ...

“Emmy listened to her gut. She was persistent and she was an advocate for her kid and she wouldn’t back down. And that takes courage. That takes intellect. That takes connection. And Emmy has all of that,” Sacks said.

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Role of health insurance

Emmy has good insurance through her job as a compliance service operations analyst with Toyota Financial Services at the company’s Plano headquarters.

“The great thing about Crim is that No. 1, her parents have health insurance. That helps. I’m sorry, I hate to say it, but it’s true. No. 2, Emmy is well educated. She’s more educated than I am,” Sacks said.

“I’m extremely thankful for Toyota, because our insurance is amazing,” Emmy added. Bills started pouring in the first week of treatment. By mid-April, the baby’s medical bills had reached $1.5 million “and I think Cody and I have only had to pay maybe $3,000,” Emmy noted. “(Toyota’s) insurance is immaculate.”

At the start of the hospitalization, Emmy’s best friend set up a GoFundMe account titled Crimson’s Recovery, which has raised $1,565 so far. More donations have come in through Venmo. Together, the family has received a little over $4,000.

She was still on maternity leave, then got a couple of extensions, before returning to work Feb. 13. She was at the hospital when she wasn’t at work.

Cody wasn’t as lucky. The day before Crimson went to the hospital, he had started a new job detailing classic cars. Initially, he said he was told to take as much time as he needed, but he went back to work after two weeks, commuting between home and the hospital on weekends. And in April, he was fired for missing too much work.

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Experiences intersect

Emmy’s journey began in Cedar Rapids, where she spent several years as a caregiver for her father, david e. hein, a graphic artist, scenic artist and actor well-known in local theater circles who preferred to spell his name without any capital letters. He died Aug. 14, 2019, after a long battle with Stage 4 colon cancer that had metastasized to his lungs and brain.

“What’s crazy about these two stories is the way that my dad passed away was actually not because of cancer,” she said. “It was because of sepsis” — in which the body responds improperly to an infection, potentially causing vital organs to fail.

He had moved to Ames late in his illness, so Emmy started commuting from Cedar Rapids on weekends. She grew suspicious of a boil on his left leg that wasn’t healing, and was causing him “immense pain.” So she decided to take him to the hospital, where the doctors warned that because he was undergoing radiation treatments, he wasn’t a good candidate for surgery.

Fast-forward to Jan. 6, when Emmy took Crimson to the pediatrician in Texas. The baby “also had what appeared to be a boil on her private area that was not blanching,” Emmy said.

“I had a gut feeling that it was sepsis, and that's why I didn’t stop, because it looked extremely similar to my father’s. And that’s kind of how these stories connect, because I’ve seen it before and now I’ve seen it again.”

She turned to alcohol to cope with her father’s illness and death.

“I went at it extremely way too much,” she said. “I made pretty poor decisions those three years or two years before I moved (to Texas). I don’t even know what it was, but it was like three months before my move, I just snapped out of it. And I quit (drinking) and drove myself into work.”

Through all the turmoil, however, she worked two jobs and earned a bachelor’s degree in criminal justice with a concentration in fraud. Then, she pursued two master’s degrees, one in communication management, and the other in business administration, from the University of Dubuque.

“Even though I made some pretty poor decisions, if it wasn’t for school, I think that’s really what kept me on track,” she said, “because you have to have time management, and a goal for me. I’m very goal oriented. I needed that. If I didn't have school, I don’t know what would have happened, honestly.”

In March 2021, she found out Toyota’s Cedar Rapids call center, along with others, would be closing to bring staff together in three sites. She could choose to relocate to Texas, Arizona or Georgia, or separate from the company. She opted for Texas, the company’s headquarters, giving her an easier opportunity for advancement — which came pretty quickly.

Now it was time to continue working on herself.

She met Cody on Facebook dating shortly after moving to Texas. His wife had died about a year earlier, and he and Emmy were each looking for a friend. But by mid-May 2022, they were dating, and a year later, they married.

With added income from a job promotion, Emmy discovered she could afford to build a house. Now that she has a family, the house is beginning to feel a bit small. And she’s smaller, too. She started a weight loss journey in May 2022.

“I had just kind of had enough,” she said, realizing that she wanted to have children, move without breathing heavily or experiencing pain. So she started investigating what her health insurance covered for weight-loss surgery. She met with the doctors, met all the qualifications, including having sleep apnea and acid reflux, then went through the blood work, and on July 29, 2022, had duodenal switch surgery.

“It’s not practiced in a lot of states,” she said. “It’s pretty much gastric bypass and the gastric sleeve put together.”

She has lost about 160 pounds, from her starting point of 410 pounds, and continued to lose weight during her pregnancy.

Today, she has more energy, her sleep apnea is gone, and she loves to shop for clothes. She also sought out therapy during and after Crimson’s hospitalization.

“It’s a lot to process, but I did seek help,” she said. “So every Sunday I do go to therapy to work through it all. It’s a lot for a 30-year-old.”

Still, on Jan. 16, she wrote on Facebook:

“Becoming a mom has taught me to be patient, to be strong, to enjoy the groove of life, and to stop to enjoy every moment. From foot kisses to sleepless nights there is no other title I would ever want to have. I wear with honor the title Crimson’s Mom.”

New mission

Since Crimson most likely developed meningitis in utero, Emmy’s new mission is to encourage moms to be tested before and after birth and to insist the newborns be tested, to avoid the nightmare her family has endured.

It’s not part of the regular testing panel for newborns because it occurs so rarely, Sacks said, but the test does exist. Emmy wants the test to become standardized and for the moms to receive the antibiotics before birth, and for the babies to be tested right after they’re born, and again at their one-week and two-week checkups.

“It could have been caught,” she said, underscoring this on a Feb. 13 Facebook post:

“If I teach anyone anything, just ask for your newborns to be tested for group b strep when they are born. I never want anyone to go through what I, my husband, and Crimson have gone through. Even if you are negative, still do it.”

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