Over the past 4 months Mila Vasaio has spent every day of her life hospitalized. Mila was born July 2017at 35.4 weeks gestation at a local hospital where she received ongoing care and management of increased apneic events in the Neonatal Intensive Care Unit (NICU).
On day of life 5, Mila’s care was escalated when she was transferred to the Neonatal Intensive Care Unit at Children’s National Medical Center where she has now spent the past 136 days.
Throughout Mila’s NICU course she has been diagnosed with a rare genetic disorder called PHOX2B; she has also been diagnosed with Hirschsprungs disease which has resulted in the placement of an ostomy. (CCHS)
Mila was intubated throughout her hospitalization at Children’s National Medical Center until she received a tracheostomy on day of life 57. She is now ventilator dependent and remaining on CPAP during the day and SIMV during sleep. Mila has also has a gastrostomy tube surgically placed which allows her to optimize her nutrition through daily tube feeds.
The past four months have proven to be challenging medically, emotionally and financially for our family. As we continue to be present at Mila’s bedside every day, riding the rollercoaster which we now call Mila’s journey, we have consulted with specialists throughout the hospital, sat in many family meetings, made decisions regarding Mila’s health, taken absences from our employment and put the needs of our daughter and family first. Mila’s hospitalization is just the beginning of our journey. As we prepare for discharge from the hospital in the next month we are aware of the financial stressors we will continue to face in the form of inpatient hospital bills; ongoing medical expenses and caring for our family on a single income due to Mila requiring round the clock care at home from a parent and visiting nurse, also her brother is 4 year old and he can't wait for his little sister to come home.
Throughout Mila’s hospitalization we have been thankful for all of the care she has received at Children’s National Medical Center. We are hoping through gofundme we are able to use all of the donations received to cover medical and living expenses in order to care for Mila at home.
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