TRAVERSE CITY — Kimi Baker and her husband, Bobby, never leave the hospital before they read a bedtime story to their daughter, Penelope.
It’s something the couple has done since the day they learned Kimi was pregnant, and it’s something they refuse to stop, even on the worst days, said Kimi from the hospital Friday.
Then, each night before they walk away from DeVos Children’s Hospital in Grand Rapids for the night, they move aside the tubes and wires to kiss their 2-week-old girl goodnight. The Bakers fill their 10-minute drive to their home in Comstock Park with hope and prayers that the next day will bring better news.
Sometimes, it seems like there’s been only bad news since doctors informed them they’d detected a heart defect in their baby during a routine ultrasound appointment in May, said Wendy Warren, Kimi’s mother.
They were told then that the baby — they had nicknamed “Pickle” because they wanted its gender to be a surprise — would need surgery immediately following birth to stay alive. She had Hypoplastic Left Heart Syndrome (HLHS).
And they learned there’s a 30 percent chance she won’t survive her first year. She had undergone six surgeries by Friday, 11 days after she was born.
“We’re just so sick of bad news,” said Warren, who said Kimi grew up on the family’s Old Mission Peninsula cherry farm. “We’ve heard the term roller coaster more and more times in the past few days. What was supposed to have been a simply joyous occasion has become anything but.”
And last week they learned Penelope has a severe immune disorder that only can be treated with an expensive surgery not covered by the family’s insurance.
One silver lining persists: a community effort in Kimi’s hometown called the “Pickle Jar Project.”
The project, inspired by a pickle jar full of pennies given to the couple by Kimi’s father, Gary, has now spread across Traverse City with pickle jars posted in stores and restaurants alongside signs asking for donations.
”I had a message from one of her childhood friends who said, ‘Can I have a pickle jar to put here?’” Warren said.
The money raised in the jars will help offset Penelope’s medical bills, which ballooned to $209,000 by the end of Sept. 9, the day she was born.
“My daughter posted this jar of pennies on Facebook,” Warren said. “Marge Long couldn’t get this idea of this pickle jar of change out of her mind.”
Long organized distribution of more jars and began to put together an effort at the Old Mission United Methodist Church that will benefit the family. Church officials will dedicate their annual Harvest Dinner fundraiser to the couple and Penelope.
The event on Oct. 5 will feature a live auction and open donations to help the family, Warren said.
For more information about the effort, contact the church at 223-4393.
For more updates on Penelpoe’s condition, go to www.facebook.com/thepicklechronicle.