Mila Loves Happy Wheels!

"Not compatible with life". Those are words no mother ever wants to hear. Mila was born with Mosaic Trisomy 18. Statistically, only 50% make it to birth. Out of that 50% less than 10% make it to a year old. 94% are full Trisomy 18 while only a mere 5% are mosaic. The doctors told us while she was in utero that she would pass before birth or shortly after. We were beyond devastated. We went on to plan her funeral while I was pregnant. It was the hardest thing we've ever done. Fast forward to delivery and Mila was born blue and barely breathing. Her little body was clinging on to life. Since we knew her time earth-side was limited,  we had all of our family come into the delivery room, pass Mila around and say hello and goodbye. Then they left my husband, Chris and I, in the room alone with her. I'll never forget Chris holding Mila's little 4 pound body singing to her and rocking her. To our surprise, she began to sing back and her little body started to turn from blue to pink. She was alive!!  

Mila was named after my mother, Milagros, (Mila for short) which means miracle in Spanish. She started living up to her name as we witnessed miracle after miracle with her. We knew all of Mila's complexities and how her little body wasn't built like ours. She had a lot of issues that needed to be addressed. Among the long list of issues was a huge heart defect that needed repair as soon as possible or she wouldn't be able to live very long. I remember going to our first doctor appointment and the doctor telling us that he was in the business of saving lives and that we needed to decide if we wanted to repair her heart or not. We didn't even know that was an option. Most kid's with Trisomy 18 are denied heart surgery and labeled "incompatible with life". We were very fortunate to give her the opportunity so, at 10 months old, we headed down to MUSC to get full heart repair. This was Mila's third surgery, her first being bladder surgery and her second being g-tube placement. We went on to spend 2 months in the hospital after heart repair. This was the first of many lengthy hospitalizations. 

Unfortunately, Mila developed Pulmonary Hypertension. There is no cure and it is 100% fatal. Hospital life became all to familiar to us. We spent all major holidays, including birthdays, multiple times inpatient. Because of Mila's complexities, any little thing, be it pain, a cold, a UTI, would put Mila in respiratory distress and off to the hospital we'd go. Most times. landing her on death's doorstep. Almost all of our hospital stays landed us in the pediatric ICU. That's where Happy Wheels comes into play. Every Tuesday they would bring a cart full of books, blankets, toys...you name it. They got to know us, and Mila, all too well. They knew she liked cozy blankets, light up toys, and stuffed animals. They would go as far as to save certain things for Mila. It was one of the highlights in such a scary and heavy time. I went on to donate items to Happy Wheels, when I could, as I personally witnessed the joy it brought not only to my daughter, but other patients as well. We are so thankful to Happy Wheels for being a bright light in the dark!

Mila will be 9 years old in June. We didn't think we'd get 5 minutes with her let alone YEARS! She has defied all of the odds and amazed everyone around her, especially doctors. This girl always comes out smiling. She is the joy of our lives and a complete blessing! Thank you Happy Wheels for all that you do! I will forever be thankful to them!