On January 23, 2018, exactly 5 weeks after Ellie’s birth, we got the final word that Ellie had CCHS. We were sad and overwhelmed, but at the same time, we were glad the diagnosis was not worse. At one point we were told Ellie might have any number of syndromes that could have been so severe that we would have watched our child deteriorate and die in the hospital. And deep-down in my heart, I had a feeling there was going to be something different about this child, although I didn’t know what. My husband always does such a great job at taking life in strides, not focusing on the negative, and always reminding me how good we have it compared to others, no matter what we are going through — and even this awful news was no exception. I always thought of those reminders during the rollercoaster of this time. Marriage
On the other hand, I did not exactly know what dealing with a CCHS child would entail, and nothing could ever entirely prepare a momma’s heart for the shock of the news that ‘Your daughter is going to need a tracheostomy and a ventilator, she will not be able to breathe on her own without the support of a vent.’ So another 2 weeks later, on February 6, Ellie went in for her tracheostomy surgery. I thought this was going to be one of the hardest days to experience. And while this day was painful in one sense, on the other hand, this was one of the most beautiful days I had yet experienced because I got to see my daughter’s whole face for the first time. You see, her face had been covered with all the tubing from the intubation and feeding and breathing tubes for the last 7 weeks of her life. So for the first time, I got to see Ellie’s whole face. Her chubby little cheeks, all puffed up from the sedation meds, were precious and perfect.
Emily Boedeker
Leslie Duffield
After the trach surgery, Ellie would have practically been ready to come home within a week or two, but the true journey for Kevin and myself was just beginning. We needed to become trach-trained and certified in order to bring our daughter home from the hospital. We would continue to spend many more months on the road back and forth to Children’s Hospital, splitting the time between life at home with the boys and life in the hospital with Ellie, learning all her needs and how to care for her. As time went on, our sons acclimated and did a marvelous job adjusting, and even Ellie began developing and reaching her milestones as if she weren’t even in the hospital. Thankfully Ellie’s cognitive and behavioral development has not been altered or affected. Plus, she gets off the ventilator several times a day now and breathes on her own while awake! We personally have met several young adults with CCHS who are currently living on their own and attending college, and others who have gone on to get married and have children. Most of them only use the ventilator while sleeping.
Emily Boedeker
While there are many discouraging aspects about CCHS and life will never be the same as we have known it, we are so thankful and grateful for how far our Ellie has already come. God has used this experience to change our family for the better, and we will never be the same after this trial.
Throughout every trial are highs and lows, and I would say the highest high was the day Ellie finally came home from Arkansas Children’s Hospital. After 195 days, my very last trip home from the hospital was riding in the back of an ambulance with Ellie.
