It's been quite awhile since the last update - while I wanted this to be therapeutic to write in, it became too much when it seemed that every single update was steps back. November was a very dark month for me mentally but deeply due to Everett not being able to make any progress and constantly taking steps back, getting more infections,... the list was never ending. Conversations started to be had on the potential of Ev getting a trach and how medically complex our future would be; it was hard to process. Elijah and I had started the process of transferring his care to Boston - meaning our family would have been split up even more.

Then December 1 I got a phone call shortly before 7am from the hospital. My stomach dropped answering it - I knew something happened (otherwise, they would have just waited to tell me when I got there in a few hours). The doctor on the other end of the phone said Everett self extubated (meaning he pulled his breathing tube out)... and then she said "and he's doing great - we put him on bipap oxygen". I had a mix of emotions - how did this happen, but at the same time overjoyed that something I pleaded with God for every single night just.. happened. He wasn't intubated anymore and he was doing... great. He took it into his own hands and proved everyone that doubted him wrong. And he continues to.

Since then, Evy is now on cpap oxygen and we are actively weaning. He remains stable - the goal is to be on high flow oxygen a little after the new year. I still am in shock that I am writing that and it's been almost 3 weeks since it happened. I remember telling one of my favorite nurses a little before Thanksgiving that all I wanted for Christmas was for Ev to get extubated and to get off this really nasty drug he was on for his heart. Both happened, only a week later.

He has also weaned off 2 of his narcotics successfully (what he was on to keep him relaxed while intubated) and we started to wean the last yesterday. Once he is weaned off of this one, we will get to remove his PICC line! He does still have other medications through his feeding tube, and a few of those will need to be weaned as well. However, removing his picc line is HUGE.

He has been a completely different baby since he self extubated - happy, so alert, loves to play, takes his paci (I never thought that he would- this is also huge!), like to eat his hands, sit in his swing, play on his mat, and even wants to try to roll over... he is a normal baby underneath everything.

Some of the best news (I know, can I beat self extubating?) came earlier this week when we learned that, for the very first time, his echocardiogram (his heart ultrasound) had... IMPROVED. His heart is becoming stronger and working better with his lungs to pump oxygen.

We still have a long journey ahead - as in a few more months in the NICU (we have already been here 4months on the 29th), but the last month has illustrated even more how much of a Christmas miracle our little Evy is. God is good.