Since we had no idea about her diagnosis ahead of time, nothing was prearranged or planned. We were blessed with friends and a church family that helped us financially. We are thankful for our baby girl, Emma, and would do this crazy all over again for her. She is so full of life and truly one of the strongest girls I know!

Despite CDH and all the other challenges she has faced, Arden brings joy wherever she goes. She is the HAPPIEST child. We are thankful for my cancer because, without it, she wouldn’t be here. Arden has changed my life, and I am forever grateful we get to grow old together.

Jerry is a true miracle! He is very active and goofy. He is talking, jumping and rocking, rolling, crawling, pulling himself up, sitting up, and trying to stand up - all the normal baby things. We are about to celebrate his one-year birthday!

We cannot thank the CDH staff at Boston Children's Hospital enough! They saved CC's life, and after almost 114 days, we are home.

Luca is a very happy boy who loves to laugh, smile, make noises, and babble/screech, especially at his brother and fur siblings. He loves to wave at everyone all day long, including himself. CDH can't stop Luca from always smiling and bringing smiles to everyone he meets!

I'm so thankful for the care we received at John Hopkins. The entire CDH team on that floor is incredible and I will never forget them. I am also so thankful for the Tiny Hero community and the hope I received when I had none!

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!

I share these details to say that even under the direst circumstances, there is HOPE! Yes, there is pain, grief, and fear of loss, but there is always HOPE!

Trey is absolutely thriving! He was able to wean from the oxygen completely in January after 4 months of being home. He is still 100% G-tube fed but is beginning to show more and more interest in purees and food. Trey truly had a story to tell, and it was our job to help him tell it. This is only the beginning.

On February 27, 2021, Braxton was finally discharged from the hospital with the lowest setting oxygen and some feeding issues beating all odds New York had said about him. I cannot thank Dr. Kays and his team enough for saving my son and giving him the living chance he deserved!

On January 20, 2022, after 113 long days in the NICU, he was discharged home to us on a CPAP of 9 and 5 liters of oxygen. Robert very much loves life. He is a pretty happy-go-lucky guy and blows mommy and daddy away every day with how hard he fights. 

I fought hard for my little girl all these months and will continue to. I questioned them, brainstormed and spoke up when I needed to. I wasn’t afraid to pull everyone in and advocate for family meetings when I got frustrated. My sweet Ella turned one this month and I am forever grateful to be her momma. She is truly a blessing and I am happy to have her here with us all today!

Callie is doing really well, and her personality is emerging now that she is home. She still sees a lot of specialists very regularly, and we still have a lot of obstacles ahead of us, but we will continue to fight!

We still have procedures and surgeries to worry about, but she’s a very happy girl and such a firecracker! We love her and her scars that tell an amazing story and we always take the chance to spread awareness.

I don’t remember much about our conversation except for that she asked me what Charly’s name was. She asked if we had other kids, how old, what her name was. She asked how long we’d been married. We were people to her. Not another opportunity to experiment. We scheduled a call with Dr. Kays within a few days and spoke with him for over an hour.