I'm sorry i haven't posted in a bit, BUT to me it's a good thing because Ada's had no real issues. 

So little update shall we.
Ada's still holding on to the oxygen but we have decreased the amount so that's a plus. She's working so so so hard on her gross motor development. She's finally getting the hang of tummy time, playing in midline with her hands and pushing through her four arms. These last few weeks she has really started exploding. I think this next month will be a big one!! On Tuesday she goes in to have another echo, labs, and meat with her heart doctors. With any luck her heart is looking the same or even better and we are a go for another couple of months. We still have no answers to why she has such a rare cardiomyopathy but are so grateful it's stable right now. We are pretty certain she hasn't experienced any cardiac/arrhythmia events so still hopefully she won't. She shunt seems to be doing it's job and keeping her cerebral spinal fluid drained properly. 
Ada's sees all PT/OT/speech 1 to 2 times a week. We ended up getting speech outside of childrens. I'm beyond grateful we did. She's doing amazing things for her. Speech is working on her rib cage mobilization to help get off the oxygen and oral feeds. Right now Ada's eating rice cereal like a champ but 99% nutrition is through her gtube. I know Ada will get to eating all her meals at some point. It's definitely not a fast or easy process. 
Ada's gotten her second helmet already! Which just means her head shape is changing! Phew! 

Life has really thrown it's wrenches into our lives but I wouldn't have it any other way. Ada's truly the happiest baby ever. Annabelle loves being a big sister. And we love our girls no matter how rough the days can be. 

Thanks for stopping by! :) If anyone would like to come meet Ada this summer just let me know! I think she's getting strong enough Todo so!