HOLIDAY FLOCK STAR: Meet Xiomara
1. Names & Age: Michelle & Xiomara Deudovica Valles, “Xio” for short, pronounced "s ee - OH - m AA - r aa". She is 2-years-old, 20 months corrected age (she was born at 23 weeks and 6 days and is considered a micro preemie, and therefore, you count corrected age for developmental milestones until their 2nd year due date)
2. Hometown: Brooklyn, NY
3. A little about your daily life/routine: Xio always wakes up with a big smile on her face. Her normal routines include giving morning kisses to her cats and dogs, followed by lots of book reading (she’s learning to identify colors, animals and letters). Xio is non-verbal currently - but not for long! She vocalizes, and by that we mean she yells! She can babble on and on almost like a conversation. Its sounds so deliberate and free flowing you would think its a language! For now, she communicates with some sign language, lots of pointing and very, very expressive faces.
4. How has this changed during the Pandemic? After her official discharge home back in March, which was expedited because of Covid, she was only at home in Brooklyn for 9 days before my husband, myself and my in-laws got Covid. She is a much beloved star of CHOP (Children’s Hospital of Philadelphia) and they came to pick her up for “housing/hospitalization” while we recovered. Miraculously, she did not get Covid. After this we moved to Philadelphia for about 6 months while NYC calmed down, and Philly was her first home from the hospital. We were able to introduce her to normal life outings, walks around the block, park visits, rooftop pool parties, all while being socially distanced, and she loved it and has flourished developmentally. We finally moved back to Brooklyn in August, and have been able to continue these activities in our beautiful yard and local playground. We stay safe by having very early excursions limiting people contact, and we always carry our sanitizing wipes!
5. Through social, we have learned a bit about Xio being born a micro preemie and the strength and resilience she has shown. Please share as much, or as little, about this experience as you feel comfortable. Xiomara means "warrior princess" in Nahuatl, the Aztec language. She is every bit that. We feared because it was too early, and we cried when she came too soon, but we underestimated the strength and fighting spirit of our tiny warrior. As is the case with micro preemies, we have undergone a roller coaster ride of emotions and physical exhaustion. We embrace the tiny victories and swallow the backward progress. We have learned to love from afar, while wishing she was nestled in our arms in her rightful home. Xio had a very typical first few months for a micro preemie, but despite early interventions, her lungs were too underdeveloped and she was diagnosed with bronchopulmonary dysplasia that resulted in the need for a tracheostomy and mechanical ventilation. Due to heavy sedation and months of illness, she has significant developmental delays as is the case with all trach/vent micro preemies. Fast forward to a year later, and she has overcome so much and works so hard on a daily basis to overcome her delays and reach her milestones. One thing we have learned throughout this journey is that there is no one tougher than a micro preemie - which is why we should always fight like a micro preemie.
6. When/how did you discover Pink Chicken? My new passion is to shop for Xiomara. I’m forever looking for the perfect outfit for her! Despite being in the hospital, she has always been known as the snazziest dresser. So when I came along Pink Chicken on Instagram, it was perfect for her.
7. Why do you continue to shop Pink Chicken? It is
very chic clothing that is also very comfortable and easy to wear. Easy wear is important when dealing with a trach/g-tube baby that constantly has multiple lines attached to her. I feel that this brand brings a level of sophistication to children’s clothing and it allows me to showcase Xiomara as not just an ex-23 weeker baby that is trach/ventilator/gtube dependent, but a beautiful little girl who is experiencing life for the first time always dressed to the nines.
7. What are your favorite holiday activities, and traditions that you look forward to? Xio spent the first 17 months of life in some form of a hospital, so Mom and Dad got very creative with the decorating of the isolette, crib and hospital room to make sure we didn’t miss out on any of our first celebrations. This holiday season is extra special because it will be her first at home, so anything we do will be amazing. But to name a few traditions, we have gone apple picking, sunflower and pumpkin picking and Xio just got to pick her first live Christmas tree! She is obsessed with all the sparkling lights. We make a point of being the first guests at any of our activities to maximize social distancing. We are considering going for a midnight drive to Rockefeller so she can have the Christmas tree all to herself!
8. What is at the top of Xio's Christmas list this year? Anything purple and anything to do with owls!
9. Feelings on being our Holiday Flock Star? We feel very privileged that this opportunity has been given to a medically complex special needs child. She is not like most kids, but she is a superstar in every respect. We want other micro preemie families who are beginning their journey to know that there is hope, there is a beautiful future awaiting them. Our motto is to #makeabnormalnormal.