Featured patient of the week is Kenley Rae Hill. Kenley’s mom, Alisha Hill, had this to share about their daughter:
“CDH was so much more than a diagnosis…it was a life-changing experience that will stay with me forever. This is the story about my superhero and daughter, Kenley Rae. The day we went in for our 20 week ultrasound was the day that changed our lives forever. We found out that day that we were having a girl and that she might have a Congenital Diaphragmatic Hernia. My OBGYN gave me very little information but told me that I needed to get to Denver, Colorado right away. He said he would take care of setting up all of the doctor’s appointments and told me to stay away from the internet. I wish I would have listened…I immediately googled for more information and began to stress and panic. Not knowing what CDH was and then seeing the statistics, I felt VERY scared.
The very next week I was in Denver to meet with the NICU doctors, the surgeon, and the OBGYN. They did ultrasounds and then asked if I would be interested in having an amniocentesis…which I agreed to. Needless to say, we left feeling the worst possible pain. We heard every worst case scenario. I cried the whole way home, a 4 hour drive back to our home town.
Kenley was diagnosed with a left sided diaphragmatic hernia, with her stomach and liver both up into her chest cavity. Kenley’s odds of surviving increased every month we went. When she was born her percentage of living was at 80%. We knew the quicker she had surgery, the better. She was born on October 5, 2010. She was whisked away within a matter of minutes and the next time I would see her was when they were working on her in the NICU trying to put an IV into her head. It was terrible timing. I had my husband turn me around and wheel me back up to my room, tears running down my face. Kenley was first put on a conventional ventilator but she was fighting it so they had to move her over to the oscillator ventilator.
Kenley had her hernia repair at just 3 days old. She also had severe pulmonary hypertension. She was on the oscillator ventilator for 3 weeks. We did not get to hold her for almost a month. Once she was placed on the conventional ventilator was when we could FINALLY hold her. She progressed quickly after that and at about 7 weeks in the NICU she was moved to the graduate NICU…our dream of going home was so close. But then at 8 weeks, she stopped pooping. We found out that she had a bowel obstruction and they immediately took her into surgery at just 8 weeks old. The pulmonary hypertension came back so badly, after surgery, that they had to put a nurse with her, at all times, just to keep giving her oxygen as her stats continued to drop. We almost lost her. She was placed back on the oscillator ventilator. We were devastated. The second surgery was so much worse for us to watch. We did not think she was going to make it.
A true miracle occurred and she bounced back quickly. She was taken off the oscillator one week later. This was right after Thanksgiving in 2010. Our hopes of being home for Christmas were far from our mind. The next week, the doctor told us that he was going to “push her” and his hope was to have us home before Christmas. NO ONE BELIEVED HIM!!!!! Not us, the nurses, literally…NO ONE!!!! But on December 22, 2010 we were heading home, back to Wyoming. 77 days in the NICU at Presbyterian/St. Luke’s, Rocky Mountain Children’s Hospital. We will forever be grateful for the truly amazing doctors and nurses. Words can not express the gratitude we feel for each and every one of them!! THE BEST CARE POSSIBLE!!!
Kenley was sent home on oxygen and Viagra, for the pulmonary hypertension. She had regular check-ups with the cardiologist and the surgeon. At 9 months old she was taken off the oxygen and at the age of one she was taken off of the Viagra and cleared from the surgeon.
When I say I gave birth to my superhero…I truly mean that. She is a lively and active 9 year old with the biggest heart of any person I know. I truly believe these babies know in their heart of heart what they went through and it just makes them super special people. I am thankful for my cherub and know that she truly is a miracle. Thank you for reading our story.”
