Wichita family waits for heart transplant for 2yearold
Nov 28, 2024
KANSAS CITY, Mo. (KSNW ) — Home for holidays this Thanksgiving is very different for the Jouppi family of Wichita.
"July 31st, Millie was very sick. She was vomiting. We took her to the ER, they told us she was in heart failure," said Liz Jouppi.
After getting life-flighted to Children's Mercy of Kansas City, the family has been in the hospital ever since.
"She was very critical. Now she is much better, but she is still waiting for a heart transplant," said Liz.
Liz is off work as a CT technologist. She and her husband, Zachary, have been in the hospital for 120 days with their two-and-a-half-year-old daughter, Millie.
They also have their son, a four-year-old they call Bear, with them.
"He's been a trooper," said Zachary. "But we are all just trying to make this as normal a life as we can for all of us."
Millie suffered from viral myocarditis. She has been in multi-organ failure, and the family has been on the heart transplant list, waiting to get Mille a new heart.
Still, on this Thanksgiving, the family remains thankful for life lessons and what they consider the positives in their lives.
"Well, I know for me when she (doctor) said that she's in heart failure, I felt like I had been electrocuted," said Liz. "I was in shock. My body literally went into full chills head to toe."
Both Liz and Zachary are thankful that Millie is still alive and waiting for a new heart. But this Thanksgiving, they are also thankful for what they are learning along the way by talking to other parents with very sick children.
"I think the stories that have stuck with us, to be honest, are the parents that have lost kids in our situation," said Zachary, who is off work from his job at Textron Aviation as a robotics engineer. "You know, and the thing that they say is just value every second. They are so thankful for every second they got with their kid."
The Jouppi family is also thankful they are able to keep life as normal as possible on the road and in a hospital for the holidays.
Millie at intubated at hospital (Courtesy Jouppi Family)Millie during healthy times (Courtesy Jouppi Family)(Courtesy Jouppi Family)Millie and her brother at Children's Mercy in Kansas City (Courtesy Jouppi Family)Millie in her father's arms at hospital (Courtesy Jouppi Family)Millie and her mom Liz (Courtesy Jouppi Family)Millie with her parents (Courtesy Jouppi Family)Liz, Millie's mother hold her at hospital (Courtesy Jouppi Family)Liz, Millie's mom comforts her daughter with a pediatric nurse (Courtesy Jouppi Family)
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Millie spends her days playing with her brother, Bear, and winning the hearts of the staff at Children's Mercy.
"The staff at Children's Mercy are just amazing. They brought us in like we are family. They treat our daughter like they are all her aunts. She loves them," said Liz. "Waiting for a heart. So, we bought her a ton of toys and we try to make it like a normal life for her because it's important for her that this is normal. As close to a normal two-year-olds life as possible."
Both Liz and Zachary have said goodbye to Millie multiple times already.
"You know, because they didn't think that she would make it through that next step of intervention," said Zachary. "And she (Millie) doesn't care. She's having a great time. She is still a normal two-and-a-half, almost three-year-old just, which is such a blessing, right? To see her run around with what she's been through."
Millie spends her good days playing with her brother and once again winning the hearts of her parents.
The future for Millie remains a huge question, but as for this Thanksgiving, Liz and Zachary feel more thankful than ever before.
"I think we've learned the most from our children, honestly," said Liz. "But mostly about trying to be patient and just how far we need to come as humans. I think our kids teach us a lot of that."
A GoFundMe has been established for the Jouppi family to help cover their expenses. If you would like to donate, you can do so at gofundme.com/f/qhydsw-mighty-millie.