Evelyn Rose's Adventure

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.

05/07/2025

Happy Nurse's Appreciation Day!

Nurses have played such a vital role in Evelyn's care from before she was born to each visit we have today.

These are just a few of her nurses while in the NICU. We are forever grateful to them and many more not pictured!

THANK YOU!

04/21/2025

Happy Easter from Evelyn to you! Evelyn had an amazing time being around the 'Counsin Crew' and walking mommy around everywhere!

04/05/2025

Discharged last night! Thanks to the Pulmonary and Hospitalist teams at Arnold Palmer Children's Hospital, we were able to quickly and efficiently get her temperature down, IV Fluids and a do-able at home breathing treatment plan.

We still have a long ways to go in getting her back to full recovery, but we were able to enjoy some exciting(but tiresome) time outdoors.

04/04/2025

Evelyn hit the Trifecta of Season Illnesses this week.

Round 3 of Hospital Visits 2025: COVID Edition

Almost 2 weeks ago we decided to take a last minute trip to Florida to visit Family. Over the weekend Mom became sick, then Dad, and then Evelyn.

After increased emisis, lethargy, elevated heart rate, elevated respirations, and temperatures of 104 not responding to Ibuprofen and Actemetophine. Off the hospital Evelyn and mom went (Dad was on his way home to KY for work, just in time to get super sick). This inpatient event, we are at Orlando Health's Arnold Palmers Children's hospital.

She is currently off her formula, on IV fluids, taking round the clock doses of Actemetophine and Ibuprofen, receiving albuterol and saline nebulizer treatments and taking steroids to keep any flare ups of her chronic lung disease at bay.

Always the champion, she is doing her best and stealing all of the stethoscopes.