Thursday, November 13, 2014
A doctor came into our room instantly and asked us what we wanted to do. It sounds like an odd question to ask parents of a child in respiratory distress, but for a child with Brayleigh's genetic abnormality, some doctors might suggest not doing anything aggressive or even at all...well, because 'you know, she does have a life limiting condition.' As parents, we were unfortunately faced with a critical decision of doing what we could to save our daughter's life or choosing to do nothing and slowly watch each breath of life that she has weaken further. We were told that if she were put on a ventilator, she may never be able to come off, and we would be forced with an even tougher decision, one that we just could not see making. With tears in our eyes, Chris and I chose to give our baby girl a chance, and so the treatment began. Brayleigh was put through a series of tests to rule out any infections that could have sent her breathing into a spiral. We wouldn't know the results for a couple of days. She was immediately put on a ventilator with a breathing tube (upper left picture) to help her breathe and was transported on a gurney to the pediatric intensive care unit. In just two days, though, the tube was switched to a mode where it stopped breathing for her and was just providing additional pressure to keep her airways opened. She was breathing fine on her own, but was still receiving some supplemental oxygen. We learned that the breathing tube was too small for our baby girl, and either she would have to endure the tortuous process of getting another one in, or just coming off of it all together. By Friday, the tube was removed - so much for babies having a hard time coming off of it.
Brayleigh was then placed on a ram air cannula that was placed just at her nostrils (upper right picture) to provide her with some oxygen and additional positive pressure to keep her breaths constant. By this time, we learned that her blood and culture tests came back negative for infections, so things were starting to look good. With the cannula just at her nostrils, she would be able to have the feeding tube in again and would be able to get her milk feedings started. Brayleigh no longer needed the additional oxygen, and she was also stable enough that we could hold her. By Tuesday afternoon, Brayleigh did not need anything on her face for additional oxygen nor pressure, and we were able to see her beautiful face for the first time since the few minutes just after her birth. This was the biggest milestone yet!
She was discharged yesterday, exactly one week later, and is back home with us. Our baby girl was once again given the chance at life. She continues to prove that her life has a purpose and God has a plan. While this may not be the last time that we are faced with a critical decision about our daughter's health and the appropriate treatment for her, we can only give her the same opportunity that any child would receive without pre-existing 'limitations.'