11.Days.Old

I can't believe our sweet Berlyn is 11 days old already! Today we met with the geneticist about her deletion of chromosome 6... It isn't lethal but it is rare... Very rare. Only 30 known cases world wide. She has a tough road ahead of her and so do we. Many things are possibly affected which includes motor development, seizures, lack of weight gain, poor eye sight and hearing, moderate learning disability, possible lack of speech. But we are ready for it and will conquer whatever is thrown at us. She looked beautiful as ever today. We got to hold her again I love it so much. She was very sleepy and chill today. They are thinking that they'll take the venelator out tomorrow. I am excited but very very nervous. I just pray she can do great without it. We love her so so much and are so thankful for her.

We got free tickets to the jazz game from the Ronald McDonald house. I had anxiety about going the night before and all day long. She was very stable and doing so good so we went. I was worried  the whole time and made zach call during half time but it was nice to get out. We were very lucky/thankful for the tickets we got spoiled we got to go to the dinner there before the game which was prime rib and also snacks during half time and row 26 seats. We ran into some of my good friends which was so nice to see familiar faces and to talk to someone not in scrubs. We went up right after to make sure she was ok though. I felt very selfish to go but it was nice to get out for a little bit.