Hugging my boys tight, and taking their pictures too!

As some of you may have seen on my facebook, my sweet Libby earned her angel wings yesterday. She had come of ecmo on Tuesday, and I don't know what happened. I don't know if she arrested again or if she just wasn't oxygenating well and couldn't go back on ecmo. All I got was a text from her momma telling me she had passed. I will give her a couple of days, but I do want to know when her funeral is. We were tweaking our trip plans, adding an extra day so we could drive up there and see her before coming home. Now I don't know what we will do. This has hit me hard, I've known her for a long time, and I know Liberty was her momma's life! She was her only child and she devoted her life to keeping her well. I know she is in great pain right now and it kills me.
Also sweet baby Kelsey went home yesterday. This also hits me hard because it brings back what the geneticist told me. That Jax was a miracle because most DS babies with this severe medical problems dies in infantsy. I'm finding this to be quite true, as Kelsey is the 5th baby with severe problems to die that we know. A lot of DS kids are born with multiple medical problems, the ones the geneticist was talking about was babies that spend months in the PICU. The ones that can't get off the ventilator, the ones that hang on the edge for months. Ones like Jax. So I kiss him and thank God for 4 years with him, and a couple of other ones we know that were this severe. His buddy Gavin and sweet baby Bella, two more miracle DS babies that spent months like Jax did. And I apologize if I've missed anyone. Although we all know that all DS kids are miracles!! Many are born with heart defects, bowel problems, and airway issues. Then lets not forget leukemia, and now this blood disorder that Jax has, antiphospholipid antibody syndrome, is popping up in many DS kids!
So today we didn't do much but enjoy our boys. We played with daddy's new camera, doing a photoshoot. We are still learning a lot about the camera, it has a lot of buttons to figure out. So some came out with weird coloring or a little blurry, but we did get a lot of great pictures. It was a great first try. Here are a few. Warning, there are a LOT of pictures. Jax is especially hard to shoot, since he can't sit up and doesn't smile and look at the camera, but enjoy!