Best of last month

This last month was difficult but there has been a lot of good too. We made it through the second VEPTR! I don't know if I mentioned this, but Ava was sick right before we were supposed to fly out to Philadelphia and the stress was running high. It was a great blessing that she got better just in time for her surgery. It went so much better than we could have imagined. She was a lot stronger than the first time and everything went smoothly and quickly. Our families have really shown their love for us by sacrificing their time and energy to help however they could. Morgan's professors were all very understanding and didn't demand much from him while we were gone. Things are slowly beginning to normalize. We are so happy about that.

Linda has been so great to come up to Logan to help with Ava on the weekends, so we have been able to get out a lot more than we used to. Thank you Linda! We are so grateful for giving us a much needed break. Morgan took me on a date to take pictures in the canyon. Pretty cool.

Our final follow up with Doctor Campbell after Ava's surgery. We will be back in February for expansions.   

We got to spend more time with my wonderful parents. They were amazing and stuck by us through Ava's surgery. The hospital is not the most comfortable place to hang out day in and day out, but they did it. During this very difficult year  with Ava they have done so much to make things more comfortable for us and we thank them with all our hearts! 

Ava has been a lot happier. She is healing well and only has a couple weeks left before she is considered completely healed. She has been coming alive more and more every day.

Going Home

We are going home today! Yay! More later.

Staying Put

Ava continues to do very well. Some of the doctors in the PICU were saying that Ava could probably go home tomorrow, but then Doctor Campbell seemed to think that was kind of crazy. He seemed to think that Ava should stay around longer, so we aren't sure when we will be leaving. The only bad thing was that Ava had a fever, but they don't seem too worried about that at this point. She is pretty happy, but it's hard to have her laying around all day in the same spot. Grandma and Grandpa Smith spent a good amount of time with her while we went back to the Ronald Mcdonald House to do laundry and relax a little. We both got to hold Ava, which was wonderful and she seemed to love it, but then got a little sore so we had to put her back. At this point Doctor Campbell said her expansions will be every 4 months and that he would like to do them at least the next couple of times. We are happy that things remain calm and uneventful. We will continue to give updates.

Surprisingly good

We have been amazed at how fast Ava seems to be recovering! She was taken off oxygen today and kept her saturation up in the 98% range. That is a remarkable saturation for so soon after surgery. They took two IV's out and she only has one left. She didn't have to be on any heavy narcotics all day long, though they might give her some for the night since the night is the worst time for pain. She waved, pointed, clapped, said mama, and watched baby einstein. She absolutely loves baby einstein, especially on-the-go. We were indulgent and let her watch it 2 times. If everything goes as well as today she could possibly leave this weekend. We hope she does! We will be happy to leave the hospital. Thanks to all who have kept us in your thoughts and prayers. Ava has a lot of love around her which makes the weight of these things not so heavy.

We made it

Everything went perfectly today. They were able to do the surgery in a much shorter amount of time than last time. Ava was so brave and did amazingly.  It's true that she didn't have a choice, but she handles all the stress, pain, and trauma with such grace. Really, for a baby she is handling all of this incredibly well. She has been pretty awake, considering it's the same day as her surgery. Sometimes she gets really uncomfortable and it's so hard to deal with, but then she will try to clap her hands or suck on one of those sponge lollipops. Will write more tomorrow, so tired tonight.

Big day tomorrow

Today went well at CHOP. Dr. Campbell was so warm and kind to us. He said that Ava is looking good and seemed optimistic about her. He is so calm that it makes us feel a little better about everything. I think we are ready for tomorrow, as ready as we will ever be.

VEPTR #2

After a flight to Denver, St. Louis, and then Philadelphia, we finally made it last night. I haven't really said much about this surgery, probably because it stresses us out to think about it. We have done it before, but we also know what to expect and knowing that is stressful. We hope with everything, that this will be what Ava needs. She has been struggling a lot, even though the first VEPTR did help. The second VEPTR on her right side is supposed to balance things out more but not necessarily make as big of a difference as the first. She needs it to make a difference though. She really needs help to breathe better and not throw up all the time. We are going to CHOP tomorrow for all of the Pre-Op stuff, and then her surgery will be on Tuesday. Morgan and I have been really worn out from it all. We need all the prayers and hope possible sent this way.

Cute little bug began standing again recently

Teaching Ava to knit a couple days ago