Rylee W's CDH Story
On the 3rd day of being born she had her surgery done. I would cry every single day. I had my 2 babies at home and leaving her at the hospital it was tough. She wasn't able to make any noise since she had feeding tube in her mouth and other stuff. It was heart breaking seeing our baby girl like that.
It took her about a week for us to hear her cry. Days passed, it was getting harder my baby boys couldn't understand our every day 40min drive to the hospital. They were long days and they started getting fuzzy but i couldn't divide my self. Baby girl needed me as well as them.
Then the day came she was being released we were all excited, she came home with the feeding tube but i was ok with it. Now she is 17 months. She gets her checkups every month with her surgeon, runs around, likes to eat. I am so grateful to have her here with us. She is a blessing. She has gone thru so much but she is strong. We Love our Tiny Hero.
A week after her surgery, they told us her lungs were just not growing. They didn't have much hope that they would. They figured this was it. We were devastated to hear this. Everyone cried. Her main doctor and one of her core nurses sat with us while the four of us cried. I remember asking them if we could have her 2.5 year old brother and take photos of the two of them. They agreed and said that they would even open up her bed. But we needed to understand that this MIGHT set her over the edge. At this point she didn't like anyone near her bed, talking beside her bed, etc. She would de-sat and then her oxygen would be turned up. We talked it over and having those photos of the siblings outweighed everything. It was important for us to have some photos of him and his baby. Our son was in love with her. They were thick as thieves even before she was born. The day he came, he hugged her, kissed her. Talked about her toes, listened to her heart and just loved her. Not once did she de-sat. In fact, they had to turn the oxygen down because she was satting too high. After his visit, she fought, and she fought hard. She overcame two seizures, an addiction to midazolam and fentanyl by doing a controlled wean on morphine. She had a stroke and two infections. Her good lung collapsed twice, and her bad lung collapsed once. She even fought through the paralyzing drug one night. They caught her kicking her feet when she shouldn't really have been able to.
She continues to tell everyone how things will be. She's feisty, stubborn, and curious! She's on a feeding tube and oxygen 24/7. She has pulmonary hypertension. She's a warrior. She has a long way to go but every day she proves to us and the world that she's here for the long haul. Her lungs have grown, but not nearly as much as they should. But that doesn't stop her!
Update 2024:
Now she is six years old and loving life. She's still feisty, still fighting but doing great.
Both lungs have grown, but she is on oxygen 24/7, has severe pulmonary hypertension, and is Gtube fed. None of that stops her from playing sports, running around with other kids, or singing and dancing to her favorite band, AJR! She loves playing baseball and even played in the Miracle League! Her favorite animals are dogs and likes to put puzzles together with her dogs!