On September 19th, 2018, our daughter was be born at 37 weeks into my wife’s pregnancy. We had a really rough pregnancy, with talk our daughter having Down Syndrome (ultimately tested and came back negative), skeletal dysplasia (commonly associated with dwarfism), underdeveloped lungs, and severely enlarged kidneys. The talks prior to birth ranged from “she might prove us all wrong and do just fine” to “you may only have hours with her” and everything in between. We had a scheduled c-section at a hospital about 90 minutes away from home and are optimistically looking at several weeks or months with her staying there in the Neonatal Intensive Care Unit (NICU).
This uncertainty about what trials we, as a family, were going to face when she was born had been weighing heavily on our hearts and our minds for several months now. We have a 2-year-old boy (Archer) whose life is going to change in ways he can’t expect and is currently in the care of grandparents on the short term.
Since she has arrived, she has proven to be quite the fighter. She has surpassed every gloomy prediction, but has a long road still ahead of her for recovery and getting to be held, much less to be able to go home with her parents. As we settle in and try to discover what our family's daily "normal" is going to be, we are thankful for the outpouring of support, prayers, and love that have come from family, friends, and even strangers who stumble upon our public postings about our daughter.
See the first journal entry for a series of entries chronicling the first few days of her life so far, and look for additional entries and updates to appear here, all in one centralized location for ease of access to everyone.
