Update…..

1/25/26

Lucy’s update

Lucy’s doing good/great and we’re all just hanging out and praying that her echo is perfect tomorrow and we can start our travels home ♥️

We went for a bit of a walk yesterday and Lucy even got to have her picture taken with Superman and Alyvia thought he might like a Diet Coke♥️

Thank You ... doesn't even come close to saying how greatful we are for your support financially, sharing and most of all your PRAYERS

Myself my granddaughter Livy(Lucy's mom)and Lucy will leave early on Monday the 19th for travel day

Tuesday she has about 4hr of preop testing and prep

Lucy's

surgery is scheduled for 7:30

AM on the 21st

Please pray for Dr Sood and his team and all who will be a part of Lucy's care and recovery.

God Bless

Linda Baker Petibone and family

Meet Lucy

If you met Lucy today, you’d see a beautiful, bright-eyed baby girl who looks healthy and strong. What you wouldn’t immediately see is the journey she’s already fought through in her short life.

Lucy was born on April 17, weighing just 3 pounds, almost two months early. During pregnancy, genetic testing revealed that Lucy has DiGeorge syndrome (22q11.2 deletion syndrome), a complex genetic condition that affects multiple body systems.

At birth, Lucy had five holes in her heart. As she’s grown, four of those have closed on their own, which is nothing short of amazing. She still has one very significant hole and is scheduled for open-heart surgery on January 21 at the University of Michigan.

Lucy spent about two months in the NICU before she was finally able to come home. Since then, it’s been a rollercoaster of progress, setbacks, hope, and exhaustion. Along with her heart condition, Lucy struggles with severe regurgitation and dysphagia, making feeding extremely difficult.

About a month ago, Lucy began losing weight, something that has always been a concern. It became serious enough that she entered failure-to-thrive, resulting in a 10-day hospital stay. She is now home but relies on tube feedings every three hours until her heart surgery.

At 8½ months old, Lucy is finally back up to 12 pounds. Just this past Friday, she gained a couple of ounces — a small victory that means everything.

About DiGeorge Syndrome

DiGeorge syndrome is caused by a missing piece of chromosome 22. It can affect the heart, immune system, feeding and swallowing, speech, development, and more. Symptoms range from mild to severe and require ongoing, specialized medical care. Lucy will also be evaluated by an ENT specialist at U of M to rule out additional complications related to her condition.

About Lucy’s Mama, Livy

Livy is 26 years old, young, incredibly smart, and has the biggest heart. Her girls mean the world to her.

Livy didn’t even know she was pregnant until four months in, and once she found out, everything changed fast. Genetic testing, high-risk OB appointments, neonatal specialists, endless bloodwork, ultrasounds, scans, and constant travel to Iron Mountain and Marquette filled the rest of her pregnancy.

This pregnancy hit Livy hard — much harder than her previous one. She was exhausted, sick, had little appetite, and pushed through more than most people ever experience.

Now, Livy is running on very little sleep. Lucy feeds every three hours, day and night. Livy tries to bottle-feed first, but Lucy simply doesn’t have the energy to eat enough because of her heart condition. Livy recently learned how to insert Lucy’s feeding tube herself, something no parent ever expects to learn — but it has made a huge difference.

Why We’re Asking for Help

The financial strain has been overwhelming.

• Travel expenses for a 4-hour round trip from Iron River to Marquette, anywhere from 1–3 times per week

• Upcoming travel to University of Michigan, reporting on January 19 for surgery on January 21

• Lodging near U of M — we are hoping for space at the Ronald McDonald House, where donations are $10–$25 per day, but availability is not guaranteed

• Time off work, gas, food, medical-related costs, and daily expenses while caring for Lucy

This GoFundMe is to help ease that burden so Livy can focus on what matters most: keeping Lucy strong and getting her safely through heart surgery.

From the Bottom of Our Hearts

Every donation, share, and prayer means more than we can express. Lucy has already proven how strong she is, and with your support, we can help give her the best chance at a healthy future.

Thank you for taking the time to read Lucy’s story and for standing with this beautiful little fighter and her amazing mama.