Evelyn Rose's Adventure

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!

09/16/2025

Happy Neonatal Nurses Day!

The nurses in our NICU at Cincinnati Children's were in many ways more than Nurses but friends and family.

A huge THANK YOU to the Nurses that cared for Evelyn and all of the other NICU nurses out there. The dedication, passion and love that has been given to our Family on not just the good days but the bad ones too, goes above the call of duty.

Our NICU nurses in so many ways were not just nurses, they were champions for the delicate, protectors to the fragile, advocates, confidants, silent shoulders, sounding boards, conspirators of joy and so much more.

So again, THANK YOU for all you do on the good, the bad and the ugly days. Your dedication and work matters to so many.

08/11/2025

2 years ago Evelyn came into this world. After many visits to the Doctors for fetal MRIs, ultrasounds, EKGs and meetings. She was here, and we are all the more better for it.

She taught Mom and Dad a lot. The power of hope, the feeling of a true win, the breakdown from fear, devistation of the unknown, but most importantly how to be... more.

It's so crazy to look back at the photos and remember the long days and nights combined with the wins and set backs of the early days. Then we see how far she has come since leaving the NICU. How much she has taught us not about just being a parent, but about: ourselves and how to care for someone who needs more: advocacy, time, patience, love, acceptance, determination, accountability and just raw mettle at times.

Evelyn is such a loving, funny and smart girl. We are so excited to see where her adventures lead us next!

08/04/2025

Happy early Birthday to this girl!

Evelyn turns 2 on August 10th. We celebrated with a party and a surprise gender reveal!

We are forever in awe of this girl! She spent most of the party dancing. Such a far cry from how her life began. We could not be more thankful for how far she has come and the support of people around us!

08/01/2025

Life Update & Photo Dump! Summer is almost over! However this Summer of 2025 has been a wild one. From Montana to DC then home with a slew of Dr's visits in between We have made the most of it!

Evelyn is doing great! She started Speech Therapy in May. She has been just soaring in her words and signs. She has shown great progress in her Oxygen needs, and her pulmonologist is so happy with where she is at. Cardiology and Surgery teams are also riding along in her progress. She won't need another EKG or ECHO until she goes for another surgery or at her 3rd birthday. No scheduled surgeries this year, but Dr. Lim will evaluate her in December for the next Omphalocele closure and Diaphragm repair.

Soon she will be 2! Where has the time gone!?!?