My name is Lindy Williams and I am a fellow nurse/coworker of Ashley Smith. Ashley and her husband, Kyle welcomed a Beautiful baby girl into the world on April 3, 2024 at 8:55am. They also have two other children: Brandon who is 17 and Avery who is 5. After much convincing, she agreed to let me set this up. Ashley has been a warrior and does not like asking for help. She works countless hours to keep her mind busy, but also because they need the money. This is her story: Payton Sawyer Smith was born at Riley Hospital via unplanned c-section. A c-section was conducted as Payton was in the womb transverse (horizontal) as compared to head down. Little Miss Payton Smith was born weighing 6 lbs. 7 oz and measuring at 19.7 inches long. She was also born with a chromosome disorder known as Recombinant 8 syndrome (a multiplication of chromosome 8). This is a condition that involves complex congenital heart abnormalities, urinary tract abnormalities, moderate to severe intellectual disability, abnormal muscle tone, and a distinctive facial appearance. The most common heart abnormalities are known as tetrology of Fallot and conotruncal defects. Payton suffers from some minor deformites of the brain, a cleft pallet, recessed jaw line, recessed tongue (potentially blocking the airway), and two heart defects. (1) double outlet right ventricle syndrome and (2) the mitral valve which is much smaller than it should be. Payton is the first patient of Riley Hospital with Recombinant Syndrome 8. At birth, Payton let out a little cry and was breathing on her own. Little Miss Payton needed some extra help breathing; therefore, she was intubated and put on a breathing machine. She is breathing on her own and breathing at a rate that is faster than the machine. Her vital signs are stable; however, they do fluctuate when Payton fights her breathing tubing or bares down to poop. The doctors, nurses, and respiratory therapy have stated that Payton may not need the breathing machine for breathing but it is more for structural support of the jaw and airway. At this point, removing the tube could jeopardize the structural integrity of her airway. Our biggest concern is the structural integrity of the heart. 4/8/23: Payton got her EEG probes removed (no seizure activity). Mommy is being a superhero and producing enough milk for a small militia; therefore, TPN (nutrition) is no longer needed. Central line was removed tonight as well. Little Miss got her nightly scrub down from Mommy and Daddy. Payton had her eyes open and was "smiling" at us as she got all cleaned up. We got to put Payton in the first outfit that we ever purchased for her. This is the first time she was able to put on clothes. Unfortunately, photoshoot was cut short due to Payton being cold from the bath. However, we did wrap her up in a swaddle sporting the Colts logo and Riley logo. 4/10/23: All levels are within normal range. She is still on the ventilator at the lowest settings required, room air. Pulmonology will consult with ENT about attempting to remove the ventilator to see if little miss will be able to breath without it. 4/26/23: They did a bronchoscope on Payton in the OR before they attempted extubation to ensure her lungs and lower airway was ready. During the scope they saw that Payton’s airway was swollen, and inflamed. There was thick green secretions present. Her secretions are so thick that her breathing tube was clogged at the lower portion of the tube. So, for now they only replaced her tube and, didn’t attempt to extubate her. ( just to be safe) The doctors believe she has some type of infection in her lungs. They did cultures of her secretions. It’s now a waiting game for her to grow! Once, the infection is gone they will attempt to extubate her! Third time is a charm! 05-23-23 at 11:15am: Payton is headed to her jaw distractor surgery. Unfortunately, Payton will need her jaw broken to insert the pieces that will allow her jaw to be gradually moved forward over the next couple weeks. As the days go by, the jaw will be gradually moved forward by the turn of the devices. As the jaw is moved forward, this should open up Payton's airway allowing her to breath on her own. We are very hopefully that Payton will be able to breath on her own in the coming days. 5/23/23: After Surgery: Payton's surgery went well and was successful! She is highly medicated with pain medication at the moment but should recover within the next couple hours. The jaw distractors will start being expanded tomorrow. They are hopeful that she will be able to be extubated in a few days. 5/31/23: Payton's extubation was successful!! Mommy and Daddy couldn't be more proud of her! Our family continues fighting for Payton every day as Payton battles through each and every obstacle in her path. Payton Sawyer Smith is a determined little girl that continues to beat the odds and show those doctors and Riley staff who is in control of her future. She continues to impress us each and every day. She is currently on oxygen through her nose but hopefully in the coming days the oxygen support will decrease and eventually Payton will be able to breath completely on her own. She still has a long road ahead of her but we will continue to fight with her each and every day! We appreciate all the prayers and wishes sent our direction. From our family to yours, thank you to everyone that has supported us and continues to support us along this journey. 6/3/23: Our beautiful sweet girl is 2 months today❤️ Since being extubated she has found her voice. She has been bright eye, and more alert then ever. She is enjoying being able to move freely and is taking full advantage of it. The nurse gave her sweet-ease today and she is hooked (sugar water). She loves her pacifier, and snuggles. ❤️ Payton tested positive for rhino virus yesterday. She has had an awful but productive cough, and some events were her stats drop pretty low. They increased her oxygen to 15liters. Our sweet girl has been through so much in this short amount of time. GI issues Extubation attempted x3 NEC infection 3 different respiratory infections Jaw distraction She is such a tough happy little girl❤️❤️ 7/13/23: She goes in for surgery today to have fluid removed from her brain. Please continue praying for Payton and her family. Ashley’s Facebook where she posts updates
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