Evelyn Rose's Adventure

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!?!?

07/11/2025

06/15/2025

Happy Father's Day to the BEST Dad around! Thank you for all you do for Evelyn and I.

06/15/2025

This week Evelyn had the awesome opportunity to show off how amazing she is to 7 different Senators and Congressmen from Kentucky and Ohio. As a apart of the Children's Hospital Association's Family Advocacy Day, we met with Lawmakers and their teams to demonstrate how important federal funding is to children's hospitals and the importance of medicaid for those who are the most vulnerable.

06/09/2025

And we are off! Washington DC Bound!

05/21/2025

We are so excited to officially announce that Evelyn is going to be a Child Advocate for Cincinnati Children's during the Children's Hospital Association - Family Advocacy Day 2025 at the US Captial. Evelyn, Mom and Dad will meet with US senators and a congressman from Kentucky and Cincinnati, OH area. We are so excited to share her journey and the importance of advocating for the children in our lives and Communities.