Surgery #2: 4 Days Out - Update #2

I just got bac k from seeing Avery again after dinner tonight. Jon had been with her since 12 noon today while I slept and my mom hung out with Caiden. She was doing great when we got back over there at about 8:30 pm. Jon had gotten approval to hold her at about 4 PM today and he said that she had been doing really well since then. Apparently, she burped and passed some gas (sorry, I know that is probably not fun to read, but it is true and may be the source of her discomfort and madness), and settled right down once he picked her up. She also finally had a big BM (the first one since surgery Monday), so from a GI standpoint, things must have felt much better. We have off and on really thought that maybe GI issues were responsible for the back arching/crying evetns and we are really starting to believe that even more confidently. So, I will approach that tract with the doctors tomorrow. I am just wondering if changing her formula might help. They have her on the same stuff that she was on prior to surgery, except that the protein powder (we were adding that to the over-the-counter formula so that her protein needs were met even with her low calorie needs) additive is different than the one were had at home. We were using ProMod, which actually I guess they have stopped making that all together. So, the hospital has a different brand they use which Avery has never had before arriving here. It seems possible that it could be causing GI sensitivity or discomfort for her. So, we will talk to the docs and the nutritionists about that as soon as we can. Since she was so comfy when we got there, mom and I worked on changing the bed clothes so that she had a clean and comfy spot to rest. We had planned to give her a bath after, but she stayed sleeping even after Jon got up and laid her back in the crib. WOW! Since these surgeries, I can't remember when she last stayed alseep when we moved her. Thanks to God for that progress and the rest for her body. Since she was resting, I told Mom that we just needed to let her be and that she should take the opportunity to get some sleep herself before the nurse had to mess with her again at midnight. We can wash her up tomorrow when she is already awake. So, I left with Avery sleeping peacfully and with Mom lying down to rest and came back to the house to spend some time with Jon and Caiden before bed. I'll get to spend some time with Caiden tomorrow afternoon too, while Mom sleeps (if she needs to depending on how much she gets tonight) and Jon hangs out with Avery. I'll be back on evening and overnight shift tomorrow. Mom and I take turns with the overnight...Jon has a tough time staying up all night if he has to. He is the early morning person out of all of us. It's a good thing we have both. Well, just wanted you all to know that she finally calmed and got to rest today. That's a great big step in the right direction! YEAH...all your prayers are helping! One last thing...if you take a moment to look at the blogs and links I have added to this page, you will notice that there are links to information about some other children. These are children of people we have met here in Baltimore (either this trip or before) or through some other avenue who are stuggling with their own major medical problems (some the same as or in a similar line to Avery's and some completely different). I ask you, please, to include these beautiful children and their families in your prayers. They all are traveling hard and scary (and yet hopefully hopeful) paths and need as much support and strength as possible. They have all touched our lives...maybe they'll touch yours too. Take a moment to learn about them by clicking on their links. Thanks so much!