Update

Annie weighs 4 lb 3 oz tonight. Today Annie had a really tough day, which is very scary and emotional for us! She had two grade 4 episodes today--that's where she just completely stops breathing and needs to be bagged with O2. After talking to the doctor we decided to have an ENT specialist come and examine her to check for possible problems there. They didn't find anything, but will be in tomorrow early to do a test on her throat and vocal chords using a scope camera to look for possible problems there. If there are no problems here this will rule out ENT issues that may or may not be contributing to her breathing problems. So, we'll see what happens with that. If she has more serious episodes they will do some more testing for possible infection development--they say there could be some sort of infection developing which could possibly be contributing to the issues. So, again we wait. It seems we are waiting for everything in our life right now and it's not easy. It hurts not having answers and not being able to be in control of outcomes! Earlier this afternoon when Nicki was at the bedside Annie's temperature was down, but it came back up after a bit. So, she's learning how to regulate temp as well right now. It's an ongoing process and we trust that God is traveling with us through this journey. Peace out--