Just plain tired of it all!

Today is really tough. Tomorrow we will have been here for 35 days, five weeks! We are all so tired and physically and emotionally drained. I woke up this morning feeling worse off then when I went to sleep. Ava slept very well last night but she too woke up a grouch. She was fussing and pulling on all her tubes and wires. It is so hard to tell if she is just sick of all this, or if she is really hurting. I don't think she is in that much pain when she is in bed but I do think she gets to hurting when I pick her up and move her. I can only imagine what it feels like to have your stomach open.

I know a lot of people have asked what they can do to help us. I was thinking this morning that it would be great to have home-cooked meals. If anyone wanted to make them up and put them in throw away containers we would just love that. We rarely ever leave the room. One of us always stays with her. She is old enough to know when we are not here. The last thing we want is for her to be afraid. I think in my heart Ava is in a good place right now. I'm a little nervous about what is actually going on in her insides but I have faith to know that God will work it all out.

We know that this is no where near over. She will have to be fixed, (her final closure surgery) if everything doesn't heal and then we will be looking at more time in the PICU and more time here. The surgeons are taking it all really slow because well that is how Ava needs things right now. Her tummy is feeling better and I think her nausea is gone. I have asked them to keep those medicines coming. Her tummy is not swollen that we can tell anymore. Last night I measured it and got 50.5 cms. So that is great news. Her drainage from the wound vac is very little and it is a light yellow color. All great signs. She hasn't had a fecer for a little over a week. Her blood counts were great this morning. She hasn't thrown up any more since they stopped the suction of her NG tube. ALSO we had poopy this morning. So things seem to be "moving in the right direction!"

She woke at about 5am and we took her for a race car ride again. She really enjoys that. We weren't able to get out of the room yesterday because this little girl slept peacefully ALL day. She didn't wake up until about 7:30pm! She IS getting rest.

I wish I could just open my eyes and realize this had all been a horrible dream. However I know that it is all very real.

Here are some pictures of her this morning. She is such an amazing little girl. She just rolls with the punches.
"Zoom, Zoom! I'm ready guys."
"Mom why are you stopping?"
Yes it is 5 AM in the morning, We are on "Ava time" everyone! My hair isn't even done, uggh!
Miss Ava's eyes look very sad again today. I wish Mommy could fix al your ouchies.
Princess Ava and her twin!

Now here is a video of her car ride. Keep in mind that it is 5 AM!

Photo and video editing at www.OneTrueMedia.com

~Terri