CDH Stories

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Herle’s CDH Story

I found Tiny Hero’s community on Facebook. I wrote my story and asked for stories of hope in return, and the members did not disappoint. I got overwhelmed by the response and copied all the stories and images into a document that I printed and carried with me everywhere. I read it so many times the pages got worn thin. It was a physical hope to hold on to.

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Grayson’s CDH Story

Grayson has definitely pushed through many obstacles thrown his way, but he comes out even stronger each time! He will turn three this year, and every time I look at him, I can’t even believe what he’s been through and how far he has come! This journey has not been easy, but it has helped to know that there is a community of families out there to which you can relate!

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Amelia’s CDH Story

Amelia has not had it easy. But what I have found out through this journey is that she is not alone in her struggles. She is here with us. I can hold her, kiss her, rock her to sleep, and love her unconditionally every day. Being her mom is an honor, and I don’t take it lightly!

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Kendall’s CDH Story

Kendall is now over 3 months old. She is doing amazingly cognitively and physically! I don't think she'd be where she is without the care from Dr. Kays' team and without the Facebook page from Tiny Hero, where I got their recommendation. She really is a fighter and I can tell that in her personality already. I know she will do amazing things in her life!

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Ty’s CDH Story

I've followed Tiny Hero since before Ty was born, read all the stories, and found HOPE that I would someday get to share our sweet Ty's story. It's scary, it's intimidating, devastating, and nothing about your child having to go through this is fair, BUT it is NOT a death sentence. These babies are fighters; they have no choice but to be, and their parents and siblings are too!

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Aspen’s CDH Story

Aspen is a bubbly, happy, and very curious 2-year-old who loves going to the playground, playing with Play-Doh, doing Legos, and going shopping with her parents! Her story proves that CDH diagnosis doesn’t define your child and their future in any way.

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Oliver’s CDH Story

I am hopeful that our complicated and rare journey can help someone someday. Oliver is one in a million and truly a miracle! We feel blessed to have our baby alive and thriving. I am so thankful for the many people and doctors/nurses who have helped us along this crazy and stressful journey.

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Baylee’s CDH Story

Baylee has been living it up at home with her brother, getting stronger by the day and thriving every day. She is still very small, but that doesn’t stop her from doing anything. Baylee is now a year old and is the sweetest, most independent baby ever. This journey was not easy at all, but these babies are so strong and worth every bit of it!

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Copeland’s CDH Story

Now our sweet boy is almost seven months old and is starting to rock his feeds orally with only needing to use the G-tube once through the day and sleeps all night, so he is fed through the tube at night. He is finally reaching his developmental milestones and is such a sweet and happy baby.

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Charlotte’s CDH Story

After 68 days in the NICU, our sweet miracle came home! Charlotte is now ten months old, developmentally right on track, and eating completely orally. She is still small, but that doesn’t stop her from doing anything! This journey is so hard, but these babies are strong and worth the fight!

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Charlotte’s Story - Congenital Diaphragmatic Hernia

Charlotte came home on December 29th with an NG tube and no medications except Pepcid and vitamin D. Within a week of being home, the pediatrician allowed us to take out the NG tube since Charlotte was taking a bottle and breastfeeding just fine. Our sweet girl is absolutely a Tiny Hero, and I hope that she continues to beat everything thrown at her!

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Rhiley’s Story - Congenital Diaphragmatic Hernia

For all of the CDH parents out there currently in the thick of it like us, know that these babies are stronger than you can imagine. They fight like hell and are so resilient. Also, remember to give yourself grace and know that a whole community is available to help get you through what is most likely one of the hardest things you will ever experience.

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Avery’s Story - Congenital Diaphragmatic Hernia

Avery ended up being in the hospital for two and a half months and coming home with a G-tube and no oxygen needed. Now at almost a year old, she's G-tube free and hitting all her milestones. Her heart has developed well, and her echos have been good. It's amazing how strong these babies really are. Even though it's hard, it really is true when people say not to lose hope.

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