Evelyn Rose's Adventure

04/06/2026

When you have kids with sensory aversions, life is always a little more complicated. (Not even counting the special medical needs).

As a caregiver, You start to ask yourself.
- Will they like this?
- Will this be a mistake?
- Are we going to have a epic melt down?
- Are we going to enjoy this (kiddos and adults)?
- Can we handle this today?
- What accommodations do we need?
- Did I bring enough emesis bags?

Then when we do something new or something again that we struggled with. Its those little wins that remind us that for every meltdown, hard moment, emesis, and failed accommodation, those challenges are totally, completely and irrevocably worth it.

In the last week Evelyn had so many exposures that could have made her react negatively, but she put on a brave face and tried things. Which at the end of the day, is all we can ask of her. AND reminder to us and those around us.
People struggle - silently and out loud - and all we can do sometimes is give people: time, space and the ability to experience new things. Dont shy away or say no just because the threat of something hard or difficult looms.

03/01/2026

February 28th is Rare Disease Day.

The symbol: a zebra.

Because in the medical world there is a phrase. "If it has hoof beats. It's a horse." As Evelyn knows so well. Just because it walks like a horse doesnt make her a horse. She is a zebra.

1 in 200 people suffer from a rare disease
300 Million People
Aprox 5% of the population.

Evelyn is a loud and proud Zebra.

Why do we celebrate and push this day?

For Advocacy in day to day practices, and as a reminder that although most fit a mold of what we understand as standard care practices. There are those that don't. They still matter.

If you or a loved one is being overlooked or treated in "standard care practices" that just arent working. You can advocate for more. Advocate for more care, better care, more understanding, more compassion, less ego and to ensure that needs are being met.

Rare is beautiful and rare is still important.

02/09/2026

After 2+ worrisome and medically confusing weeks. Evelyn is home!

She is not back to her overall baseline, but she is at a go home level that we can manage. Which is pretty standard after an Ileus. We are doing extra monitoring and added in some new GI meds and an emergency GI med.

She will need to see her GI team, Pulmonologist and her primary care physician. As well as complete a sleep study and work towards coming down on her time she spends on the feed pump.

And as always we attempted to partake in our ice cream ritual at discharge!

Thank you to everyone who reached and responded with positive vibes and prayers.

02/06/2026

After 2 weeks, countless stickers and a few IVs. Evelyn may go home tomorrow!

On Thursday 1/22, what started as an issue holding any kind of liquid or puree in her belly turned into Evelyn spontaneously emitting bile. Mom quickly rushed her to the ER where we spent 12 hours. Once on the hospital medicine floor it was quickly discovered to be a completely stopped GI and Urinary system. The team at Kentucky Children's Hospital believe the cause to be a post viral illeus that went south fast. Within hours of systems showing up, Evelyn was unable able to consume food or use the restroom.

For the next 3 days, through a snow and ice storm. Evelyn went through a 36 hour GI clean out regimen, giving a new feeling towards pickle juice. In which she had an allergic event - called an angioedema - to Lactated Ringers - a very common and intensely utilized IV fluid for hydration.

Which was followed by 2 more enemas in the following 3 days. Still unable to keep feeds down, she was put on an extensive digestive medication regimen.

During which she was diagnosed with a UTI, had an absence seizure and underwent a spot EEG and MRI. All while battling a drop in her blood sugar, that caused a Rapid response from the medical team.

Unable to hold feeds still over a week later. We restarted her tube feeds tolerance at the most basic level to attempt to awaken her GI system. Which has proved to be successful, but will require a long term ween back to her baseline bolus feeds.

She had a GI study done on Monday that was the first good news in a week. Her bowels although slow, did not need surgical intervention.

A day later, Evelyn had a hypothermic event where her core body temp dropped to just above 95 degress and stayed there for 9+ hours. Prompting another rapid response and slew of tests and additional overnight stays for monitoring. Along with a 36 hour EEG after a set of what appeared to be cluster seizures during her hypothermic night.

If Evelyn goes home tomorrow, we will have metabolic outpatient tests, a comprehensive sleep study, feed intolerance issues and some additional overnight monitoring to complete. However we feel home is where the heart is and Mom and Dad are capable of taking on the challenge!

02/01/2026

It's Omphalocele Awareness Day!

As many of you on here know. Evelyn was born with a Giant Omphalocele which caused her to have a few other conditions and complications.

An Omphalocele is a Congenital Birth Defect that occurs when the intestines and other abdominal organs fail to fully return to the baby's body during intestinal formation in the first trimester. causing a hole or defect in the abdominal wall and organs to fail to align in the body properly and in some cases at all. What makes it Giant, is being over 5cm and including the liver. The repair for an Omphalocele can range from something simple right after birth to numerous surgeries and interventions.

The Omphalocele itself is not always life threatening, but the complications from the Omphalocele can be.

Evelyn was considered a higher risk than most due to the sheer size - measuring over 29cms, excessive amniotic fluid that was retained in her omphalocele sac, the number of organs in her Omphalocele - Liver, spleen, small and large intestines, stomach, and pulmonary hypoplasia - lungs that stopped growing around 30 weeks leading to Chronic Lung Disease, Dextrocardia and low muscle tone - she has no abdominal muscles and a Congenital Diaphragmatic Hernia called a Morgagni. Due to the complications from her conditions she developed Pulmonary Hypertension, Reactive Airway, slow motility in her stomach and gut and a need for at home oxygen amongst some.

We continue to be in awe of her. As we are 10 days into another hospital stay. She remains ever in good spirits and shows everyone how resilient and strong she is!

01/27/2026

Adventures of Evelyn- Hospital Edition!

Evelyn's first Hospital trip of 2026(hopefully the only) is in the books.

Evelyn came home from a fun play session and starting throwing up. Unable to keep even water down and spontaneously emiting bile. We took her to University of Kentucky Pediatric ED, where we discovered that she was suffering an Ileus after a viral illness from a week prior.

Her GI system was completely blocked causing her to not just emit bile continuously but also to be unable to use the bathroom in every sense. Due to Evelyns complex abdominal anatomy and lack of abdominal muscles, it made treating and overcoming this ileus difficult.

However Evelyn is on the mend, but still in the hospital overcoming feeding intolerance and fluid retention. We hope to be going home in the coming days!

01/17/2026

2 years and 5 days...

Since Evelyn left the NICU at Cincinnati Children's. Some days its as if we just left, and others it feels like it has been a decade.

Evelyn is 2 years and 5 months and 6 days old. There were times in the NICU and before she was born. We didn't know if she would make it this long. We were just asking for another day and in a few moments, just another hour.

She has gone through more in her life than most of us will ever, and her journey still has many hurdles ahead. She continues to grow and thrive. Showing Mom and Dad how to push and find strength during the hardest of times, that love is beautiful and defies the odds and that with a lot of faith and a whole lot of courage, we will overcome each challenge before us.

Evelyn can count to 14, say and read most of her ABCs, knows her basic colors and shapes, and knows where each person is allowed to sit (IYKYK). She is bold, strong willed and opinionated. Loves her figurines and animals.

She also: has a gastrointestinal tube that supplies 100% of her nutrition, needs supplimental oxygen to support her undersized lungs that suffer from long term reactive airway disease and chronic lung disease, is haunted by pulmonary hypertension, has a back up plan for her respiratory back up plan, has Gastrointestinal issues, an unrepaired diaphragmatic hernia, global delays in her feeding/speech/physical movements, a rotated heart, malaligned abdominal cavity and throws up with major body movements and spontaneously. She participates in 4 kinds of therapies, is followed by 5 other specialized teams and has a Emergency Medical Tackle Box that follows us from place to place.

At 2 and a half, Evelyn does not let her medical needs define her. She embraces her medical needs and defys the odds each and everyday.

01/07/2026

Life has gotten a little hectic in the Mondelli household. A little belated but we hope everyone had an amazing Christmas and New Year's! Our family sure did with Evelyn becoming a big sister in November!

Now off to the races, 2026 is starting off strong for 1sts!

1st ER visit for a non-respiratory or feeding intolerance issue in the books! Evelyn got 1 stitch on her lip after an unfortunate Peek-A-Boo accident where she tripped and fell. She handled it really well with almost no emesis.

1st Dentist visit, which for Evelyn was more about the indoor slide. No cavities, and only 4 teeth left to come in!

11/28/2025

Thanksgiving has looked different in the last few years for our family.

2023: we spent away from home and with Evelyn in the NICU with no discharge in sight. Dad was working and Mom went on her 3rd social endeavor since Evelyn had been admitted to the NICU in August. Those days we were just Thankful Evelyn was no longer battling pneumonia, had been free of reoccurring issues with collapsed lungs, and off intubated ventilator support.

2024 we spent at home going through some major life and financial changes. Along with Evelyn recovering from a 3 week surgical stay. Thankful that we had our family and Evelyn was progressing in her overall repair status.

2025 we are back in the NICU with kiddo #2. Evelyn is on an up swing on oxygen dependency and just growing in positive directions.

Life has challenged Evelyn and our family over the last 3 years, but it is a huge reminder that this Holiday is about being Thankful for: the experience lose has given us, the small wins, big wins, loud and silent support from strangers, friends and family, and that we have each other.

Happy 🦃 Thanksgiving from our family to yours.

11/05/2025

11/05/2025

On Halloween in 2023, we started this page for a number of reasons.

- Being in the NICU is hard, and keeping straight who knew what... well that was just as hard and maybe more exhausting.
- Evelyn's future was changing. We had just received word that day that our Neonatology Attending was going to attempt to take her off her life supporting ventilation and see if her lungs could support herself.
- We were going on 3 months in the ICU, and the people who took care of Evelyn in the hospital. They had become more than just the people who came into work. They had became like family, and we wanted to keep them updated along the way.

There are so many more reasons we started this page, but these are some of the big ones.

We are so proud, happy and excited to see how far Evelyn has come. We still have more surgeries, more tests, more specialists, more therapy appointments, and more battles left untold. However we are here for the adventure and we are so glad you are too!

09/26/2025

Two years ago, we were hoping she would recover from pneumonia, bracing ourselves for the possibility of a tracheostomy.

One year ago, Evelyn underwent another exhausting six-hour surgery to: remove her appendix, put in a gastrointestinal tube, realign her abdominal cavity and partially repair her omphalocele defect.

Today, she danced, played, and visited with family.

Life with Evelyn has always been a journey. Some days are hard but most are awe inspiring. We are so grateful for the remarkable progress she's made and excited to see her continued growth and thriving spirit!