Donate for Lily's Critical Brain Surgery

Meet Lily. She is sweet, kind, smart, funny, and the strongest little human I know.

She was born with Hydrocephalus, which for her means her aqueducts didn’t form to drain fluid off her brain. At 7 weeks old, she had her first shunt placement. We were told to be prepared for extreme developmental delays and we would just have to see what damage was done to her brain from the extreme swelling and internal pressure. Also, that she could need multiple brain surgeries in her lifetime or if we were lucky, just the one.

She hit all her milestones and thrived as she grew. So smart! We traveled to Pensacola twice a year to see her neurosurgeon for checkups, and everything looked great. After a few years, we were able to fall back to once-a-year follow-ups.

Even though she was having no real symptoms of any complications, her neurosurgeon decided to do an MRI of her brain in late 2023 because one hadn’t been done in several years. Something wasn’t right, so we were sent for more imaging of her entire spine.

Her brain was sagging down on her spinal cord, and there is a cyst on her spine. If not addressed, the pressure could eventually cause her to lose the use of her arms and legs. He was hesitant to say it was Chiari Malformation just yet. As a first resort, they wanted to try a new shunt that was programmable because the one she had for 8 years could be over-draining. Hopefully, this would solve the issue. So we scheduled brain surgery for mid-February.

Everything went well. Her biggest concern was her partly shaved head and the stitches made her look like Frankenstein. She was recovering and healing nicely. About a month later, she woke up around 2:00 in the morning throwing up with a headache. While getting her cleaned up, she continued to throw up, so we decided to head to the ER to be safe. The doctors ran tests but couldn’t say for sure what the problem was. All the while, she was withering in the most insane pain I’ve ever seen from her. Because she now has a programmable shunt, she has to be in Pensacola within 24 hours of having an MRI done. They decided to send her to Sacred Heart in Pensacola and let them treat her since her neurosurgeon was there. Her new shunt was malfunctioning, and we were running out of time. Now keep in mind she’s had an ambulance ride there twice at this point in her life. So when we were told she was going in a helicopter this time, it scared us tremendously. She was mostly unresponsive at this point.

As soon as she got there, they went to work. They adjusted the setting on the shunt to see if that would alleviate the problem before resorting to surgery. She woke up around 7:00 pm with no remembrance of the past 17 hours, for which we were so thankful because it was traumatic.

Two days in ICU, then another couple in a regular room. Everything seemed to be working as it should now, and we were able to go home. That was her exciting spring break.

Twice more, we had middle-of-the-night wakeups. At this point, we knew just to drive straight for Sacred Heart. They decided the new shunt wasn’t operating properly and replaced it again right before the 4th of July. So now we are at four multiple overnight stays for the year in addition to going over for MRIs and follow-ups.

We are currently at right at a year with a new, properly functioning shunt. Unfortunately, it has not helped the sagging brain, and the cyst might be slightly larger according to new imaging. I like to say it’s sagging because she’s so smart and her brain needs more room

Lily is scheduled for Chiari Malformation surgery next week. We intentionally scheduled it for after the 4th so she can enjoy swimming, watermelon, and fireworks. This surgery is quite a bit more intensive and requires a longer hospital stay. They have to cut out the base of her skull to relieve the pressure and build a little hammock to support her brain.

The trips back and forth for appointments and surgeries in addition to copays are adding up. We are typically not the type of people to ask for help, and this is very difficult for me. If you can just send good vibes for a successful surgery and recovery, that’s so appreciated also!

Thanks for reading,

Jessie, Jacob, and Lily