Avynn's Story Part 1 | Life Story of a Medically Complex Baby | Cornelia De Lange Syndrome

In this video I discuss my pregnancy with Avynn, her birth story, and life at home with a medically complex baby. Avynn was diagnosed prenatally with a major heart defect and then later a rare genetic syndrome called Cornelia de Lange Syndrome (CDLS). Unfortunately, Avynn passed away unexpectedly in January 2022. She was the light and joy of our family and we miss her so much. Part 2 of her story gets really interesting, so make sure you're subscribed so you don't miss the release of that video. Thanks for watching! Timecodes 0:00 - Intro 0:20 - My Pregnancy with Avynn 2:28 - Heart Defect Diagnosis 4:44 - Third Trimester 6:06 - Avynn’s Induction/Birth 7:50 - CDLS Diagnosis 9:46 - Avynn’s Feeding Issues 10:23 - Bringing Avynn Home 11:06 - Avynn’s Reflux Issues 12:42 - Caring for Avynn 14:32 - Avynn Thrives ||| ABOUT US ||| Hi friend! We are Gabe and Hannah. Welcome to our transparent journey as we navigate through marriage, parenthood, grief, child loss, and finding joy in life’s unpredictable storms. We have two children, August and Avynn. Our second child Avynn was born with a rare genetic syndrome called Cornelia de Lange (cdls), which made us medical parents. Avynn passed away unexpectedly at 13 months old in Jan 2022. We found out we were pregnant again with our third child a few weeks after her funeral [Due Oct 2022]. Join us as we learn that hope can still be found even through life’s trials. ||| S O C I A L ||| I N S T A G R A M Follow Hannah -   / lifeafteravynn   Music: Epidemic Sound, Envato Elements