Navy’s Story - Congenital Diaphragmatic Hernia (CDH)

I had this weird feeling very early on in pregnancy that something was wrong, but I kept not letting myself think about it. I wrote it off as me just worrying. It had been eight years since I was pregnant - and I kept telling myself it was just nerves. I was so incredibly sick for the first two trimesters. Old wives' tales say morning sickness is a sign of a healthy baby. In this case, they were wrong. At my 20-week anatomy scan, we asked the tech to write the gender on a piece of paper but not tell us, and we were going to do a gender reveal. I brought my daughter with me so she could see her baby brother or sister. I remembered my scan with her being quick and exciting. This one took hours. The tech just kept saying she couldn't get the measurement she wanted. She had me flip over onto one side - then the other, over and over. She finally said she needed to bring the doctor in to see if he could get it. When she left the room, I told my fiancé, "this isn't good." That's when I learned the three letters that would change our lives. CDH.

"This is very serious," he said, "but you're in a good place. The best surgeon in the country is right here in Florida." I didn't really hear anything else. I kind of tuned him out. I kept looking at my fiancé - at my daughter that couldn't understand what was being said. She just knew it was bad.

And then I went home and googled it, and everything hit me. I bawled. I cried and cried and stood in silence as my fiancé just held me. He had no idea what to say except that it was going to be ok.

Not only did our son have a deadly defect, but we were also now at the beginning of a worldwide pandemic. My weekly visits then went to me only. No visitors. The last appointment my fiancé could come to was when we met Dr.Kays and his team at John Hopkins All Children's Hospital in st. Pete. He told us on his scale of severity from 1-100, with 100 being the worst, our son was an 85. He is a right side hernia, with liver, kidney, Bowels, and adrenal gland up. His combined lung volume was 15%. He said he would 100% need ECMO - and most likely would go home on oxygen and feeding tube for a couple of years.

He was completely fine in my belly. His fight for life would begin at birth. Being over an hour from the hospital, we relocated to St. Petersburg to prevent going into early labor at home. The Ronald McDonald house that we planned to stay in was closed due to COVID, so we had to stay at a hotel. My fiancé had to continue working, so he drove back and forth. My daughter had to spend a lot of time away from me- back home so that she could do online school. It was really hard.

On Mother's day, we were admitted at 11 pm to begin inducing labor. May 11th, 2020, our big-eyed fighter looked me dead in the eyes and yelled the cutest yell you've ever heard, which was a surprise to me because everyone said he would be silent. That's when the 10+ people in the room with me got to work. They ran with him into the adjoining room to perform rigorous life-saving measures, including intubation. They wheeled him by my bed for a couple of seconds, so I could admire him. 6 pounds 8 ounces. Navy Lee Otis stole both our hearts as he stared into our souls. My heart broke for him. My entire being silently screamed that I needed to hold him. I needed to comfort him. I needed to lay him on my chest and breathe him in, and I couldn't. I could just watch as they took him out of the room to further stabilize him and run test after test.

Navy blew all of us away at how well his numbers and blood gases were. But CDH is a marathon - not a sprint. We would have two good days and then a minor setback. But this trooper stayed well enough to avoid ECMO. He had his repair at four days old.

I was completely guilt-ridden when I would leave the hospital to see my daughter- though I'd feel the same guilt about being away from her while I was at the hospital. The hours felt like days - the weeks felt like months. I lived for the short moments he would be awake and would look all around the room and would squeeze my finger and wiggle his toes, but then he would fall back asleep. I'd sit by the bed and take one million picture videos. I'd make messages on letter boards to document important moments. Like his first bath. Extubation day, and the very first time I got to hold him; day 21. I waited 21 days to FINALLY get skin to skin. To carefully maneuver all the chords and lines and cuddle his perfect, tiny body. Daddy got to hold him on day 22. Then began the most frustrating and exhausting part of the whole thing. The feeds. The process they have takes what feels like forever, but it WORKS. We became close friends with other parents in the unit. Some even stayed at the same hotel as us, so we would walk and get coffee or text each other from down the hall saying, "we are up to 25 mls! - we are up to 30!" And just when I got to the point where I didn't think I could stay one more day away from home - one more day in the hospital. One more day of watching my son lay in a bed when normally we would be working on sitting up and rolling over, they asked us to bring the car seat in to test how his oxygen levels would stay while in it. And I finally saw the light at the end of the tunnel. Home was right around the corner- Aria would finally meet her baby brother. We could all be under the same roof — for the first time - finally.

We were discharged on June 30th after 49 days in the JHACH CDH NICU.

Today Navy is one year old. He's SO close to walking. He eats food of all kinds. His favorite show is Bluey, and his favorite song is "here comes the fire truck" from the super simple songs channel on YouTube. He loves dancing, swimming in the pool and going to the beach. He gets a huge smile whenever he sees Mickey Mouse or his sister. He is his mommy's sweet cuddler and daddy's wild baby.

He's the bravest, most incredible miracle I've ever seen, and we owe everything to God and Dr. Kays!