Thursday, February 2, 2012

Quick Update

Surgery went well yesterday, but Ava has had more pain than usual so we are going to stay another night. Later in the afternoon today she began playing with some little cars and talking to herself in her usual playful way, so we are happy that she is feeling more like herself. She is sleeping peacefully now so that is always a good thing in the hospital.

Wednesday, February 1, 2012

Surgery #12 CHOP

We skipped the post on surgery #11. That was the one on her lip at Hopkins and was not a pleasant experience at all. We are glad to be done with that one! Surgery# 12 is today at 11:00 am to expand the right and replace the left VEPTR as well as have ear tubes placed. We wanted to give Ava a little reward in advance, so we let her watch Caillou when she woke up this morning. We try to limit her Caillou watching for many reasons (can drive me crazy), but since she has such a love for the show, we couldn't withhold. Ava has done really well this time around with trying to be a good sport about surgery related things. On Monday we came up to Philadelphia for pre-op stuff and though some tears were shed, I noticed a big difference with Ava's willingness to try to go along with it all. I found if I explained things beforehand, she seemed  to have more of a determination to be brave, although you can't blame the crying when the actual needle pokes. She has continued to have an amazing attitude that I have a lot to learn from!

Ava is a silly billy. Here she is just hanging out in her crib being a silly billy.

There really isn't alot of variety with this whole process, which can make these posts rather dry and repetitive. I guess the hospital is not the most exciting thing to write about, but I do feel that Ava deserves some kind of tribute every time she goes through this. I was thinking about it this morning and I think I would feel scared to do just one of these surgeries, but Ava has had to do it over and over and will continue to. It is all she has ever known, but that doesn't make it less invasive or frightening for her. I am beginning to see how this process really is going to shape Ava's character for life. I am so proud of who she is and who she will be.

I think we will have a ton of these pictures by the end of it all. Blue hospital chair, sterile room, beautiful dozy little girl on giggle juice, and two anxious parents.

We will update when Ava is out of surgery.

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.

Saturday, August 27, 2011


Two years old! I can't believe it! We were planning to go to a petting zoo this morning for Ava's Birthday, but with it being rainy and not knowing exactly when mean old hurricane Irene was coming, it all put a damper on our plans. Grandma and Grandpa Smith are also away right now in Alaska so we weren't planning on having the full Birthday celebration with cake and everything until they get back anyway. It just felt a little funny; being such a great day to celebrate such a great girl and not having more going on. I felt bad that I hadn't planned better, but at the last minute we decided to buy a little cake mix and have cupcakes and dinner with the Brownings. It was nice. Ava was happy to play with her cousins and I think she felt like it was a special day even though we didn't do a lot. She did get some great gifts from Grandparents and was VERY happy about that(thank you Grandparents)! Elijah and Ivy made a cute sign for Ava to see when she came upstairs and that made it feel more special and official! I guess I just had more of an expectation of what this birthday should mean or be because last year Ava had just had her cleft palate repair and had to wear no-no's on her arms. I imagined all these perfect scenarios of how it was going to be, things I would make, and how it would make up for last year, and in the end it wasn't like any of those I imagined, but Ava was happy. I think I'm learning that it really doesn't take much and things don't need to be perfect; in fact they really shouldn't be. Adults get these funny ideas in their heads of what it means to be happy, and then kids remind you how it really is. I have so much to say about Ava, how well she is doing, how much she has come alive in the last while and how she is such a bright star in our lives. Morgan and I couldn't feel luckier to be the parents of Ava. I will write more this next week as well as post a slideshow of Ava's first 2 years. Here are a few pictures from the fun evening we had with Ava and the Brownings.

We went in on this kitchen with my parents and Ava absolutely loves it! I do too and don't mind it being in our family room because it's so cute. We probably won't leave it in the middle of the room but it's very pleasant and just the perfect size for Ava.

Goodnight little frog!

Thursday, June 2, 2011


Ava sleeps peacefully now. Surgery went well yesterday, but it was a little harder on Ava than last time because Dr Campbell had to replace part of the rod and it makes her a little more sore than just a regular expansion. This morning she is still pretty out of it and not her normal self quite yet, but she shows small signs every once and a while that she will come around soon. Dr Campbell said he stretched her out quite a bit and showed us the x ray which looks better than before. Morgan and I tried sharing one of the small chairs to sleep on last night and couldn't ever get comfortable so we are a bit groggy today, but other than that we are happy Ava is okay.