Roller.Coaster.Ride

Well today started out pretty crappy. We woke up with Berlyn's surgery scheduled for later in the day. We were worried about the surgery. We always call first thing when we get up to see how the night went for Berlyn. Last night was rough again with her desats and cause of this they had to bag her a couple times to get her to breathe. When we called the nurse said the doctor and his team would  like to sit down with us and have a "parent circle" aka meeting with the doctor, nurse practitioner, Berlyn's nurse, dietician, pharmacist, respiratory therapist, and social worker... A lot of people! During the circle they asked us what we want to do in surgery if they find things past what they could see yesterday. They said the only thing we could do was a tracheostomy and this is something she would have for years and most likely be unable to remove it. They also mentioned it would cause her to develope pulmonary hypertension and lead to heart failure in 3-6 months. Not the news we were hoping for :( they prepared us to accept the fact that she wasn't going to make it longer than that. We sobbed as they asked us if we wanted to give the nurses permission to not resuscitate her. Tears flowed again. We weren't ready for that. No parent is ready for that type of news. They left and we kneeled together and said a prayer to seek guidance from the best physician. We prayed and didn't feel anything. We waited and waited for guidance. It didn't come then. We both had an uneasy feeling about the surgery and with the help of our dear nurse talked to the ENT doctor about her surgery. The first thing he said was this surgery is going to be very hard on your daughter and she might not make it out of it alive. It she does the results will be minimal at best. 5 hours after meeting with the circle and not receiving any answer, this doctor was our answer. I asked him if her desats could be linked to her feedings because she didn't have a single episode today and because of her scheduled surgery they stopped feeding her. We held her, had her on all her sides, and no desats. The doctor was shocked she didn't have any episodes today. We asked if acid reflux can cause apnea. YES, it can and in her instance it sounds like the culprit. At this moment we knew our answer. It was NO, a big no! We talked and decided to try Prilosec with her feedings to see if that will help her. After deciding this we had the calmest feeling come over us that told us we were making the right choice! We are so happy that we both felt good about it too which made it easy to do. We are thankful for a loving Heavenly Father who always answers prayers and a lot of the times when we least expect it. We are grateful for the doctor for his willingness to try this non invasive step first. We are thankful for the power of prayer and the knowledge that God is in charge and will always do what's best for us. 

First time wearing socks!