Better

Day 9

It's been a better day. Ava is still on BiPAP, but has resigned herself to it. She is not happy about it, but not fighting it either. The carbon dioxide levels continue to come down and they gave her a break (called sprinting) for 1 hour today. She really seemed to love the break and her oxygen was fine without it, but they put it back on because she needs it to lower her carbon dioxide levels. My parents came back up and brought our guitar, so we have been enjoying playing for her. It really humanizes the hospital room.  She was very cuddly when she got her mask off for that hour, and it was great to hold her. The BiPAP is a good thing because it puts pressure into her lungs and helps expand them, but we hope she won't need it permanently. If she did, she would need it only at night. Morgan and I are doing fine. I think we are keeping our sanity fairly intact.

Our little Scuba Diver

Day 8

Okay,  so she is not happy in this picture, but the good news is that she can sit up by herself! That is a big milestone after surgery. Unfortunately she has to wear this bulky mask for who knows how long. She has been doing better today and her carbon dioxide levels have gone down, but they are still not where they should be. Ava isn't quite herself today. For a large part of the day she was awake but in a daze. There was one point where I was drawing next to her and I showed her the picture and she grabbed my colored pencil and hit it against the paper making a lot of marks. It was very cute and I was proud. Ava doesn't get the best sleep because people are always coming and going in the PICU, but we try to make her comfortable. Morgan and I were saying today what a stupor our minds get into when we hang out in this hospital all day. The days all run together and we always seem busy but there really aren't that many different things we do. Mainly standing by Ava's bedside helping her to calm, or taking care of business. We found out from Doctor Campbell that we need to come back in 3-4 months for the second VEPTR, so that's a little sooner than we thought, and right in the middle of the semester. Thinking about real life is hard right now. School is very important, but not as important as this. It's a great balancing act indeed.

Not crazy about BiPAP

Day 7

All day long I felt like crying. In fact I did. I am tired of all this! Can I say that? Well I am. I have had it. No more, thank you very much. Ava has had a rough day, the nurses were very unfeeling and unhelpful, and more problems keep popping up. I will spare the details, but will just say that Ava is having an even harder time getting oxygen than before her surgery. They say it might be because of pain and post surgery, but it could be longer term. They have put her on bipap because her carbon dioxide levels are high, but she really doesn't like it. We are doing what is best for her, but I still can't help feel like we are torturing her in some way. Irrational as that may be. I dream of the day when our blogs won't be so heavy. I know I need to be more optimistic. I know it's just not helpful to focus on the negative. Where your focus is, determines your reality. It determines your whole experience. There is just so much pain pulling me back to the negative, so it's very hard. Let me try to be positive for a moment and see what it does: I have a wonderful husband who helps me with everything (even washing my pumps), I have a beautiful daughter who is so pure and loving, we were able to get this surgery done from the man who invented it, we have good insurance, we have so many friends and family who care and have been very supportive, the Ronald Mcdonald house lets us stay here for practically free (and it is in a beautiful old mansion), Morgan and I have our health( we never realized what that meant until now), we have everything we need and more, and we know what the purpose of life is. As hard as that is to accept. I have really struggled feeling close to Heavenly Father for a long time, and with all of this pain we have experienced with Ava, I sometimes feel like I don't know what anything really is. Like everything is nothing, if that makes any sense, But, in my more true moments, the moments I really come to myself, I know there is something much bigger than me and even bigger than all pain. I would be ungrateful to not say that. Heavenly Father is doing more for our family than we know. But, it is intensely difficult to move forward and we will keep going. We don't have another option. I just let my thoughts go. It felt good. Goodnight.

It's been a long day

Day 6

Today was a mixture of good and bad. Ava is doing very well, but has her moments; boy does she have her moments. She gave us quite a scare today. At some point after we tried to sit her up and put her back down, a lot of loose congestion from intubation came up and she started gagging. She started turning dusky and quickly turned blue and her oxygen rapidly went down from 100 to 9. Her little body turned limp and she almost passed out. It was the worst I have ever seen her. Our nurse was there, but was a little frozen about the whole thing, so I ran into the halls yelling HELP! A lot of nurses came and they got some good oxygen going and suctioned her mouth. She recovered but was very traumatized. We were all traumatized. They also changed Ava's dressings on her back for the first time and so we got to see what her back looks like since surgery. It's not pretty, but the wounds are healing very well and have no signs of infection. Her kyphosis (hunch back) looks so much better! It's not completely where it needs to be, but is very improved from this single surgery. We are so glad about that. She still has this bizarre rash all over her body from the antibiotic they gave her after surgery and her liver levels are still high, but they have gone down since yesterday. The main concern with this reaction is that she may not tolerate many antibiotics in the future. She has had them before, but they say this could be the first sign of her body building a hypersensitivity to them. On a good note, we got to hold her today! She seemed very happy to be held and was being so darn cute. She has started making ma-ma sounds. I love that of course. I think she will have a better day tomorrow because she had some really good moments today.

Big Baby! She really has gotten taller from the surgery. It's not uncommon for her to be playing with the oxygen.

Papa and Ava. He loves his little doll.

Moving Forward

Day 5

We go through this stuff way too fast

Today was pretty much the same as yesterday, except that we were informed this morning that Ava had developed Hepatitis. It's always something new. However, it is not as bad as it sounds. Apparently, hepatitis simply means inflammation of the liver, it's the cause of the inflammation that makes it serious. In Ava's case, she was just reacting badly to some medication or rash (no one knows for sure), but she is not contagious and it should go away in the next few days with the help of a steroid and Vitamin K. She was up a little more today, and her personality continues to come out to the delight of all around. Today she waved at the nurse and started making cute little vocal sounds. She also was playing very roughly with her air tube. We were able to go out with Lindsay's parents to see Eclipse and to eat at Bobby's Burger Palace (The famous Bobby Flay of Food Network) and it was awesome! Being a burger connoisseur myself I can honestly say it was the best burger I have ever had, and the milkshakes were very impressive.

Another day

Day 4

I had a picture of Ava to post but thought better of it. In the photo she looked in pretty sad shape; a swollen/puffy body covered in a weird rash, squinty eyes, and a big foam pad taped to her back. Not to mention about 20 wires and tubes flowing out from her chaotically. All in all she is doing better but it is hard to see because she is sleeping most of the day still (heavily medicated of course). One cute thing was earlier she woke up for about 15 minutes and interacted with us. Her eyes are almost swollen shut but she was waiving at us and clapping, even though her little fingers were swollen like sausages. It's kind of weird to have Ava so zonked out. We miss her and her delightful personality, but I am all for the sleeping as opposed to her feeling the pain. She has been having a hard time keeping her food down, so they are giving her very minimal amounts for now. Tomorrow is another day. Here are some pictures of the hospital, I think it is beautiful.

The main atrium 

Looking out of our window

Sleep

Day 3

For the most part, Ava has been sleeping the whole day. She had a blood transfusion today and that seemed to help her. She was so pale and has a little coloring back. The nurses are pretty impressed with Ava. They say she is a superstar because there is such a strain on her body right now and she is compensating for most of the deficiencies completely on her own without any extra support. She breathes harder and faster to do this, but she does it and the nurses are very amazed. We are glad she is sleeping, it is better for her not to be awake during so much pain. A little earlier she woke up and her mouth was so dry, so we gave her water soaked on little sponge lollipops and she loved it.