Wednesday, September 28, 2011

Going Home

Today has gone so incredibly well and they decided we can go home! Ava stood for the first time earlier and is even walking now. At first she was a little wobbly, but she is getting the hang of it. Dr Campbell wants us to come back in 4 months because she is growing so much, so I guess we will be back soon. CHOP is beginning to feel like our second home in a strange kind of way. We are so relieved it's gone so well, and now she just has to heal. Here are some pictures from the day.

Tuesday, September 27, 2011


Well, everything went very well today. I have to thank Heavenly Father and all those who prayed for Ava and kept her in your thoughts. Dr. Campbell is a great surgeon and CHOP is a great hospital, but I have to say I felt something today that compels me to give thanks to Heavenly Father for orchestrating all these things to work out and to all of the people who helped draw down the power of Heaven on Ava's behalf. There are always so many risks and difficulties involved with surgery and I don't understand how it all works, why sometimes things work out better than others, but I can't deny the feeling I had today that Ava has been blessed and so have we.

Here are some pictures from the day. Ava had her post surgery moments of being groggy and a little wincing from time to time, but it's pretty amazing, she hasn't seemed to experience much pain and everything has gone so smoothly I can hardly believe it. I would have to say this is the best it's ever gone post-op. Dr. Campbell said it all went smoothly also. If we are lucky, Ava might go home tomorrow. Most of these pictures were taken early in the day when she wasn't feeling as well, but tonight she was crawling around her crib and making her stuffed animals dance.

The big day-Surgery # 10

Today is Ava's expansion/partial replacement of right VEPTR surgery. I can't say it's getting easier at this point to let Ava go into surgery. It always pulls at our hearts to let our sweet Ava go into surgery. Ava is a little angel. She gets upset and screams and cries when she is afraid of something a nurse has to do, but I can't even say what a good sport she is about mostly everything. It makes me tear up just writing about it. This morning as we drove to the surgery, it was around 5:30 am and definitely too early for Ava to be awake, but she was just humming and talking sweetly in her car seat as she looked out the window. I couldn't help but feel we were riding in the car with an angel. She is getting older and i think she has more stress about the surgeries than ever before, but she really is so patient and forgiving. Of course I'm her mom and definitely biased, but we just love this little girl!

I don't think I mentioned it yet, but Dr. Campbell had said at her last surgery in June that we could wait 6 months until her next surgery. At her follow up appointment early this September however, he took a look at her x-rays and said, "this girl is growing like a weed!" He said she needed surgery soon, and here we are, back in a little less than 4 months for another one. I am so glad she is growing well. We do have the G-tube to thank a lot for that. A lot of these kids struggle to gain weight because of burning so many calories from breathing so fast and other issues, and although it is my great desire to be rid of the G-tube, for now it's really helping our little girl. Today Dr Campbell is expanding the Veptr's in her back and replacing a part of her right one which will cause her to be a little more sore than a typical expansion. They started the actual surgery at 9:00 and a nurse came in just now at 10:00 to tell us they are finishing up! That was super fast! We will keep updating as time permits.