Generated by All in One SEO v5.0.0.1, this is an llms.txt file, used by LLMs to index the site. # Narrating Teddy's Remarkable Life This is the story of a boy who against all odds THRIVED! ## Sitemaps - [XML Sitemap](https://narratingteddysremarkablelife.com/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [Chapter 22: An Uncertain New Year](https://narratingteddysremarkablelife.com/index.php/2024/05/24/chapter-22-an-uncertain-new-year/) - After Christmas, things started to seem like they were getting better. Teddy was doing better and better each day. The fluid coming out of his chest tube was getting less and less and his breathing was getting stronger and stronger. They had finally been able to wean him off of the high doses of morphine - [Chapter 21: Teddy’s First Christmas](https://narratingteddysremarkablelife.com/index.php/2024/05/16/chapter-21-teddys-first-christmas/) - When you are pregnant, you begin to imagine all the 1st your child will have. Their first smile, first steps and their first Christmas. My mother had made Christmas and holidays so magical for us and I dreamed of doing the same for my children. What I never imagined was my child’s first Christmas involving - [Chapter 20: A Serious Complication](https://narratingteddysremarkablelife.com/index.php/2024/05/09/chapter-20-a-serious-complication/) - The chest tube did immediately seem to provide some relief for Teddy thankfully. As soon as some of the fluid was drained from his chest, his breathing difficulties started to ease and he seemed to be less agitated and in pain. The doctors still did not know why his chest was filling with fluid, but - [Chapter 19: We Thought We Were Prepared](https://narratingteddysremarkablelife.com/index.php/2024/04/08/chapter-19-we-thought-we-were-prepared/) - I finally managed to start writing the next part of Teddy's story. I will do my best to try and explain everything, but it was all so complex and overwhelming at the time and it has been 7 years since then, so please bear with me. Thank you! - [Chapter 6: Being Told He May Never Walk](https://narratingteddysremarkablelife.com/index.php/2023/09/08/chapter-6-being-told-he-may-never-walk/) - Of Teddy’s plethora of diagnoses, there are two that caused the most fear and uncertainty for me at the time they were given: Caudal Regression Syndrome and Hydrocephalus. Shortly after Teddy turned a month old, he was wheeled out of his room for his first official MRI. It was clear just by looking at him - [Chapter 5: A Different Kind of Newborn Routine](https://narratingteddysremarkablelife.com/index.php/2023/09/04/chapter-5-a-different-kind-of-newborn-routine/) - Teddy was stable and it was amazing. The next few weeks were focused on keeping him stable and continuing to find all the underlying medical anomalies and confirm diagnoses. What this meant for us was that just like every new parent with a newborn, we were able to start developing a routine, just one that - [Chapter 3: Proving Them Wrong from the Start](https://narratingteddysremarkablelife.com/index.php/2023/09/04/chapter-3-proving-them-wrong-from-the-start/) - Teddy survived not only his first major surgery at 16 hours old, but also his first night. At that moment we felt like we won the lottery. For a week we had been told to prepare for a funeral, but there he was fighting and proving them all wrong. As soon as we would celebrate - [Chapter 4: The Most Beautiful Feeling in the World](https://narratingteddysremarkablelife.com/index.php/2023/09/04/chapter-4-the-most-beautiful-feeling-in-the-world/) - I remember after finding out we were pregnant sitting in the doctor’s office and the doctor giving us his due date. I immediately started laughing, because the date she gave was October 3rd and I thought to myself that hopefully our gummy bear would be a day late! In my family, October 4th is a - [Chapter 2: A Glimmer of Hope](https://narratingteddysremarkablelife.com/index.php/2023/09/04/chapter-2-a-glimmer-of-hope/) - At 3:37am on August 10th, 2016, Teddy decided he couldn’t wait a minute longer and made his grand entrance. In that moment the world seemed to stop. Everyone seemed to hold their breath. I remember asking if he was okay. I don’t remember a verbal response, but she gave me a little smile and placed - [Chapter 1- Smashburger No More!](https://narratingteddysremarkablelife.com/index.php/2023/09/04/chapter-1-smashburger-no-more/) - There are very few people that know this part of the story, the week leading up to Teddy’s birth. Like my last post, we haven’t talked about this part because it was too hard and we had the miracle of Teddy to focus on. But I truly believe that the week before his birth was - [The Preface- A Fighter from the Start](https://narratingteddysremarkablelife.com/index.php/2023/09/03/the-preface-a-fighter-from-the-start/) - For as long as I can remember, I knew I would struggle to have kids. I have no idea why, as nothing in my life would have suggested this, but there was this underlying intuition that I would not be able to conceive or if I did my child may have medical issues. I knew - [The Epigraph- Writing His Own Story](https://narratingteddysremarkablelife.com/index.php/2023/09/03/the-epigraph-writing-his-own-story/) - To narrate: to tell (a story) in detail. I still remember the moment so vividly. The firehose of medical terms and odds and unknowns had been going full blast and we could barely catch our breath. The doctor had just given us another round of information that we could barely comprehend about Teddy’s potential future. - [Welcome](https://narratingteddysremarkablelife.com/index.php/2023/09/05/welcome/) - Welcome to Narrating Teddy's Remarkable Life! If you are new to Teddy's story, you can start at the beginning by clicking on Teddy's Story in the menu bar. You can also see fun updates, read about his diagnoses, and our experiences in special needs parenting by clicking on those categories. New posts will show just - [Finding ways to communicate](https://narratingteddysremarkablelife.com/index.php/2023/09/05/finding-ways-to-communicate/) - Teddy is completely nonverbal. While he does make sounds, they are not related to any letter, word, or speech. They are just reflective of his mood, so excitement or anger, etc. He has a communication device that he is able to select words and it will talk for him, but he hasn't quite figured it - [Insights into Special Needs Parenting: Beautiful Rose Colored Glasses](https://narratingteddysremarkablelife.com/index.php/2024/03/29/insights-into-special-needs-parenting-beautiful-rose-colored-glasses/) - You often hear people say that seeing the world through a child’s eyes makes the world a more beautiful place and it couldn’t be more true. There is something about their exclamations of wonder and excitement that immediately make you realize just how amazing this world can be. There are no expectations of what the - [](https://narratingteddysremarkablelife.com/index.php/2024/03/14/469/) - View this post on Instagram A post shared by Narrating Teddy's Remarkable Life (@narratingteddysremarkablelife) - [Chapter 18: Seeing those Beautiful Blue Gray Eyes Again](https://narratingteddysremarkablelife.com/index.php/2024/03/14/chapter-18-seeing-those-beautiful-blue-gray-eyes-again/) - The week following Teddy’s surgery was pretty straight forward. We settled back into a routine and started decorating Teddy’s bed area for his first Christmas! It was going to be his first Christmas and while we hoped we would be back on the main floor in a room before Christmas day, we wanted to make - [Chapter 17: A Shiny New Esophagus](https://narratingteddysremarkablelife.com/index.php/2024/01/30/chapter-17-a-shiny-new-esophagus/) - It was reconnection day! A day we had dreamed about and turned our lives upside down to make sure happened. We were so excited and could finally see a finish line off in the distance, but also knew the next few weeks of recovery would be one of the hardest parts. Honestly it seemed like - [Chapter 16: Esophagus Growing Magic](https://narratingteddysremarkablelife.com/index.php/2024/01/12/chapter-16-esophagus-growing-magic/) - Reflecting back on the few weeks after Teddy’s first surgery makes me wish we had tried harder to not be so stressed during that time, so we could have conserved our energy for what was to come. Looking back now, those first few weeks were relatively calm. Teddy was stable and his body was doing - [Chapter 15: The Longest 16 Hours of Our Lives](https://narratingteddysremarkablelife.com/index.php/2023/12/15/chapter-15-the-longest-16-hours-of-our-lives/) - We woke up on the day of surgery with excitement and fear. We were so excited to finally be at Teddy’s repair surgery but were also worried about how Teddy would handle the massive surgery and also about what the following weeks would bring. Teddy also seemed to be excited about the future. He was - [Chapter 14: The Calm Before the Storm](https://narratingteddysremarkablelife.com/index.php/2023/12/06/chapter-14-the-calm-before-the-storm/) - Our first month we were in Boston was by far the calmest and most relaxing we had experienced since Teddy’s birth. While it was very busy, we quickly fell into a routine and could just focus on Teddy growing. We were very nervous because we knew the big surgery would be upon us soon, we - [Chapter 13: An Immediate Sense of Relief](https://narratingteddysremarkablelife.com/index.php/2023/11/30/chapter-13-an-immediate-sense-of-relief/) - It was transfer day! We were extremely nervous, but so excited to get to Boston and finally have a plan of action in place to get Teddy’s EA repaired. Teddy was still requiring oxygen, but overall was doing great. He was still growing slowly, and his little personality was blossoming every day. While we were - [Chapter 12: Please, I Beg of You, Just Stop the Beeping](https://narratingteddysremarkablelife.com/index.php/2023/11/23/chapter-12-please-i-beg-of-you-just-stop-the-beeping/) - Our NICU room had been so inviting and cozy. The walls were a warm color and there was artwork and furniture to make you feel comfortable. We had developed these wonderful relationships and they all let us do everything we felt comfortable doing, without hovering over us. While we never left him during the day, - [Chapter 11: At Least We Broke Our Record](https://narratingteddysremarkablelife.com/index.php/2023/11/15/chapter-11-at-least-we-broke-our-record/) - We were home again, and it felt amazing. This time my mom had to go back home, so we were completely on our own, but we were so grateful to be home. Don’t get me wrong, it was terrifying and incredibly stressful, but there is just something about being home with your baby, without all - [Insights into Special Needs Parenting: The Most Dreaded Appointment](https://narratingteddysremarkablelife.com/index.php/2023/11/13/insights-into-special-needs-parenting-the-most-dreaded-appointment/) - Teddy sees a lot, I mean A LOT of people in the medical/therapy field. He has seen specialists in Louisville, Boston, Cincinnati, and we even flew to Arizona for one. He sees a cardiologist, pulmonologist, gastroenterologist, otorhinolaryngologist (ENT), nephrologist, urologist (2 different kinds actually), orthopedist, endocrinologist, neurologist, neurosurgeon, ophthalmologist, developmental pediatrician, regular pediatrician, dentist, regular - [Chapter 10: Back Again](https://narratingteddysremarkablelife.com/index.php/2023/11/07/chapter-10-back-again/) - There we were, back in the same room we had just left, scared and defeated. Seeing Teddy connected to oxygen and monitors again was heartbreaking and I just kept thinking over and over “what did I do wrong?” We failed. We couldn’t keep our baby safe at home. Were these logical thoughts, no, but at - [Chapter 9: Two Beautiful Days.](https://narratingteddysremarkablelife.com/index.php/2023/10/25/chapter-9-two-beautiful-days/) - We drove away from the hospital full of excitement and fear. Being a first-time parent is scary enough, but being a first-time parent of a child who is reliant on the machines they are attached to is terrifying. We felt confident we could do it, but honestly, we weren’t sure exactly how. But as with - [Chapter 8:  Home, for the First Time](https://narratingteddysremarkablelife.com/index.php/2023/10/12/chapter-8-home-for-the-first-time/) - I think as any parent can attest to, the day you get to bring your baby home is one of the happiest and scariest days. You are so excited to be able to be home snuggling your baby, you are also worried about how you will manage to do the whole parenting thing. For a - [Insights into Special Needs Parenting: Okay, okay, you’re right. It is hard.](https://narratingteddysremarkablelife.com/index.php/2023/10/07/insights-into-special-needs-parenting-okay-okay-youre-right-it-is-hard/) - After writing this post, I was having second thoughts about posting because I didn't want it to be taken the wrong way. I realized though that if I was going to write a blog about Teddy’s life, I needed to be honest and open about all aspects. So let’s get real… When someone first finds - [Chapter 7: Who Needs Oxygen? Not me!](https://narratingteddysremarkablelife.com/index.php/2023/09/24/chapter-7-who-needs-oxygen-not-me/) - Because Teddy had so many things going on, the Caudal Regression Syndrome diagnosis got pushed to the back burner after being told. There was nothing we could do about it surgically to repair CRS, so any interventions he would eventually need to increase his quality of life would come as he got older, and we - [Diagnoses Explained Series: VACTERL Association](https://narratingteddysremarkablelife.com/index.php/2023/09/06/diagnoses-explained-vacterl-association/) - In this post series, I will explain each of Teddy’s diagnoses in detail, with more medical terms and imaging if I am able to find them. These will be more technical posts, but for those interested, we hope it will educate more people on these rare conditions, so as the rate increases each year, there - [Diagnoses Explained Series: Esophageal Atresia and Tracheoesophageal Fistula (EA/TEF)](https://narratingteddysremarkablelife.com/index.php/2023/09/03/diagnoses-explained-series-esophageal-atresia-and-tracheoesophageal-fistula-ea-tef/) - In this post series, I will explain each of Teddy’s diagnoses in detail, with more medical terms and imaging if I am able to find them. These will be long and more technical posts, but for those interested, we hope it will educate more people on these rare conditions, so as the rate increases each - [The Reason- Giving the Chance of Independence](https://narratingteddysremarkablelife.com/index.php/2023/09/03/the-preface-giving-the-chance-of-independence/) - https://gofund.me/e3ac7a57 Even as I write this very long post (sorry), I have changed my mind at least 5 times about starting this GoFundMe, but the more I imagine Teddy’s future, the more I want to give him the opportunity to be as successful as he plans to be. We have never approached Teddy’s life focused ## Pages - [Contact](https://narratingteddysremarkablelife.com/index.php/contact/) - Please feel free to comment on posts or email us with any questions at narratingteddysremarkablelife@gmail.com Support our goal of giving Teddy a chance at future independence here: https://gofund.me/e3ac7a57 - [About](https://narratingteddysremarkablelife.com/index.php/about/) - This is a story about our Teddy. A truly a bright light in this world. He was born a 2lb 14oz preemie that has endured multiple major surgeries, countless procedures, and years of therapy. Teddy spent his first 6 months fighting for his life and last 6 and a half years fighting to improve his - [Special Needs Parenting](https://narratingteddysremarkablelife.com/index.php/special-needs-parenting/) - [Diagnoses Explained](https://narratingteddysremarkablelife.com/index.php/diagnoses-explained/) - [Teddy's Story](https://narratingteddysremarkablelife.com/index.php/blog/) - The Epigraph- Writing His Own Story To narrate: to tell (a story) in detail. I still remember the moment so vividly. The firehose of medical terms and odds and unknowns had been going full blast and we could barely catch our breath. The doctor had just given us another round of information that we could - [Home](https://narratingteddysremarkablelife.com/index.php/home/) ## Categories - [Blog](https://narratingteddysremarkablelife.com/index.php/category/blog/) - Your blog category - [Teddy's Story](https://narratingteddysremarkablelife.com/index.php/category/teddys-story/) - [Diagnoses Explained](https://narratingteddysremarkablelife.com/index.php/category/diagnoses-explained/) - [Special Needs Parenting](https://narratingteddysremarkablelife.com/index.php/category/special-needs-parenting/) - [Fun Updates](https://narratingteddysremarkablelife.com/index.php/category/fun-updates/) - [GoFundMe](https://narratingteddysremarkablelife.com/index.php/category/gofundme/)