Nadiliese Dawn Marvin was born on January 11, 2018 and has faced many major challenges in her short life time. From two very large holes in her heart to her abdominal wall defect (omphalolcele), but through it all she has continued to fight and face down challenges that would leave most cowering. After spending over 50 days of her new life in the NICU (newborn intensive care unit) we were able to bring her home and have a brief moment of true bliss as a family. But, unfortunately it was but a moment as little Nadi picked up a bug which lead us to having to be life flighted up to Primary Children's Hospital to be treated for RSV. She was intubated for 3 weeks and mom and dad couldn't hold her during that time. After a great battle, and a few grey hairs for mom and dad for good measure, she kicked RSV's hind quarters and we were able to return home after nearly a months stay in the PICU (pediatric intensive care unit) at Primary's. Mom and dad both were able to breath a little upon returning home but Little Nadi had some unfinished business she needed to attend to. She started running a bit of a fever and her oxygen support had to slowly be upped to keep her oxygen levels in safe ranges. concerned of a potential viral infection with fevers mom and dad took little Nadi to Utah Valley Hospital where we were admitted to the pediatric unit for continual monitoring and respiratory support needs and a positive result for RSV once again. things continued to slowly digress to the point the medical team at Utah Valley felt were unable to continue to aid her support comfortably and we were again life flighted up to Primary Children's for her support. while at Primary's we came to find out that Nadi's medication she had been using to help with her heart was causing her to have the severe fever of 105 degrees. switching the medications over proved to do the trick and her fever subsided but her support and fight wasn't quite over. the medical team ran several tests and discussed her needs and determined it was best to have her heart surgery sooner rather then later. Fast forward to post surgery everything went well considering the many complications that are involved in her case. Nadi went into surgery at 1:00 pm and mom and dad didn't get to see her until 11:30 pm that night. She was put onto the bypass machine twice both times over and hour long. Her recovery was very slow and tenuous. While recovering she contracted another viral infection rhinovirus and also a bacterial infection. We were in the hospital for nearly 6 months and there have been a lot of ups and downs along the way. We still have one more surgery to do this year and that will be her abdomen but she is doing better and acting like a normal baby girl now. She is still on oxygen and has a feeding tube and not yet up to the develop mile stones that a baby her age would be at but we are working hard on it, and her feeding is slowly but surely getting better.
