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Megan Romeo's Fundraiser:

Making Strides For CDH

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BENEFITING: Cherubs

EVENT: Pittsburgh Marathon 2016

EVENT DATE: May 01, 2016

Megan Romeo

THE STORY:

It's been a whirlwind of a 2014-2015. There I was laying hands crossed under my chest, breathing freakishly fast but exhaling extremely slow somehow. My husband and I had an ultrasound to check on my second son's growth and amount of fluid I was carrying in my body. Needless to say after 2 hours, I was deemed a "high risk" pregnancy at 34 weeks. We were told my second son, Logan Jude Romeo, had a condition called a Congenital Diaphragmatic Hernia: CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery. Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues. { www.cherubs-cdh.org} After a week full of appointments with the genetic counselor, maternal specialist and receiving an inutero EKG; Logan decided to make an appearance a week later. We had on the schedule to meet with the Surgical team who would be leading the surgery and a NICU tour was also set, yet, little did we know the night before I would begin pre-term laboring. Logan was born on November 25, 2014, and faced a 40-day uphill battle for his life. It's a hard reality for new and seasoned mommas. A reality that won't be mentioned unless asked or tucked away to bring out for another day. A reality that brought weakness to my knees an ache to my head. He was taken right a way by the team of doctors and nurses. I got a quick glimpse of him as my doctor showed me his handsome face before he was carted away to the 7th floor. I remember the first time Aaron and I laid eyes on our sweet boy, the nurse wheeled me down the hallway of the NICU to a quiet little corner in the West nursery where Logan would reside. I felt so afraid and unsure of what laid ahead, but I never doubted whose hands he was in. The Lord has also gifted the staff with talent and compassion to see this valley through with my family. Three days in to his life, he required his first surgery. Logan needed a mesh because the hole was a tad too big to not add otherwise, his body swollen and breathing from an oscillator, I knew there would be many goals and challenges to defeat. One major goal met led to another: from tube feeding and digesting correctly, to breathing with very little help from the oxygen he was given, and turning off the oscillator to adjusting medicines in order help with the SVT he acquired from being a pre-emie, it was time to move on up. What seemed like eternity was only 38 days, but 38 days too long for me. All 38 blurred together. Most days I felt at a loss and others I felt stronger than ever. Bawling to moms on the phone who have been there. done that. Pouring love into my weary heart all the while choking on my own tears. Often times I cried in the bathroom- screaming to my Heavenly Father. Being held by my own mom in her arms- she watched our oldest as my husband and I walked out hand-in-hand, tired and all, to the hospital.We tried to function normally, but our hearts were torn between two different worlds. One at home and one at the hospital. Tough transitions for all. Not all moments were perfect either. Many hours spent by the bedside on my knees: chanting prayers over and over. Feeling help-less yet Hope-filled. After many hard days in the NICU, Logan was well enough to move to the Progressive Care Unit. Here, the nurses continued to support him and us. He was thriving and growing, they continued to monitor and work on lung strength. By the end of our stay, we needed to be trained on the heart monitor and oxygen tanks as they would be added to the at-home care. The first month or so at home we at had at-home nurses meet with us weekly. He has since re-herniated ( 6 months of age) but lung wise, he is doing much better- only on an inhaler, his left lung is still smaller, but gaining strength. He truly has defied the odds and survival rates, he quickly adapted to less oxygen with each visit, soared in physical therapy and is no longer seen by his cardiologist. Logan truly is a fighter! Now, he is a ba-ba, da-da, ma-ma, crawling around boy, who loves to dance when he hears a good beat all the while keeping up with his older brother Brennan. We surely don't take for granted these days gifted to us and as I run with purpose to the finish line, I want to keep my head up and eyes out and run every stride in honor and memoriam of those sweet CHERUBS! I want to raise awareness for those families who have held tight and not wanted to let go, who have felt alone and scared, who have held their hands up in high in praise they are discharged to go home. No CDH is alike, but our desires as mom and dads to see our children have the right and best care IS! So for that I run with purpose to raise awareness for Logan and the other CHERUBS.

$45

MONEY RAISED
  • Gibboboom

     

  • Trevor and Dana Zimmer

    $25

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9% Raised of $500 Goal

Fundraise for this Campaign

The Team: $45 TOTAL RAISED SO FAR

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Donor Comments

Trevor and Dana Zimmer

Trevor and Dana Zimmer

DONATION: $25

So proud of you! You are an inspirational mom, fellow runner, and friend! 3 years ago

Gibboboom

Gibboboom

Love this family! Wish I could emulate what you guys represent as a family and individuals! Miss these guys and our little hang out sessions romedawwwwgs 3 years ago