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

Home now

We got home last night after being in the hospital for 6 days. Ava had to come home on oxygen and will have to be on it until she can get her breathing under control. It doesn't make sense to me why she still needs it now, but we know that her oxygen drops low when she gets upset or has to work harder for anything. We will keep her on it until she can keep her oxygen saturation levels up all the time. She is happy though, and waving to everyone she meets, plus she says mama pretty clearly now and I love it!

Oh Ava!

Well, here we are again. The Hospital. We got back to Utah on Monday, but Ava had an accident so we are at Primary Children's now. I took her to the doctor's on Thursday morning and the doctor said it would be okay to take Ava out more, so that is what I did. And, that is where it all began. I decided to take Ava to a fabric store and put her in the stroller. We were having a grand old time looking at fabrics and letting Ava feel the different textures. After a little while I heard her gagging, so I ran over to her and picked her up quickly so she wouldn't throw up. As I pulled her out,  her stroller fell over and her legs got caught under the tray on the front of the stroller. All of this this jolted her body in a very unnatural way. This happened in a matter of seconds but it felt like forever. She screamed inconsolably for about 15 minutes and I got her out of the store but she was really fussy. I thought for sure something terrible happened to the VEPTR, so I called the doctor and we had it set up to get x-rays the next morning. In the middle of the night though, we woke up to her throwing up and breathing unbelievably fast so we decided to take her to the ER at Primary Children's. They said the VEPTR looked okay but couldn't figure out what was wrong at first and eventually discovered that she had fractured both of her legs. The worst part is that her breathing got worse and worse and her lung started to collapse a little, so they have her in the Intensive Care Unit trying to sort it out. She is on high flow oxygen and has to wear splints until they can put casts on her legs on Wednesday. She had a much better day today and was happy a lot but still breathing fast and very heavy. This is all so crazy! Unbelievable! I feel so horrible. We are hoping that she will begin to breathe better on her own, but for now it is kind of a mystery.

Ava clapping and in good spirits

Happy Birthday Ava !

It's been a long year with this little one, but we can't imagine a sweeter baby. Ava has really been through it, but teaches us so much about resilience and pure love. She is fairly quiet but constantly studying people and I know she picks up on more than we realize most of the time. She is always ready for a good joke and makes it very rewarding to joke with her because of the laughs and head shakes you get in return. She loves books! You think she wouldn't care if you read her the same books over and over, but she is always ready for a new book! She gets the idea after a while and is ready to move on! Especially Eric Carle. She has a beautiful way of moving her hands. She likes to make them dance, even with a wave. Music really calms her, there is such a light in her eyes when she hears a good song. She loves stuffed animals that are very large. She likes to pick them up and carry them around even though they are the same size as her or bigger. She is very patient. Sometimes it takes us a long time to get everything ready for a feeding, and most of the time she just sits there calmly, just waiting. She really connects to you when you look at her. She stares right into your soul. Sometimes I don't know what to make of Ava; she can be a mystery. There is so much more to her than what I understand and I am excited to get to know her more. I never get tired of Ava even though I get tired from all that I have to do for her. Morgan calls her his littlle doll, and she really is. You have to meet her and spend some time with her and then you will know and see just how great she is!

Morgan made a delicious white cake with cream cheese frosting and I decorated it. Ava is still not aloud to put her hands in her mouth, but we let her play in the cake, and she loved it! I gave her a little ice cream on the tip of her tongue and she seemed to really enjoy it. We had a party with Grandma and Grandpa Smith, Natalie and her cute kids, Allison and sweet carriemarie, Susan, and us. Ava was a little shy of all the people, but enjoyed herself when cake time came around. 

I made Ava a black apple doll for her birthday. I got the idea from Rachelle a long time ago and always wanted to make one. I like how she turned out, and Ava really liked her too!

Grandma Smith bought some balloons for the party, and Ava had never seen balloons before. She was entertained for quite some time playing with the string. 

Ava had a great birthday! Thanks to all who came to her party and put so much into it to make it special. Thank you to those who could not be here, but would if you could, and all your love and thoughtfulness!

Feeling Better

No smiles quite yet, but we got pretty close. Ava started reaching for her feet again, so I think things are looking up. She has to wear arm bands called no-no's. They prevent her from bending her arms to put her hands or any objects in her mouth. She doesn't seem to mind them too much now, but she is supposed to wear these for 3-4 weeks! Oh my. What is to become of us? One day Ava will be free. My mom hung out with me in the hospital room all day while Morgan went home for a much deserved rest. Things went well, but Johns Hopkins facilities are so cramped! We are stuck in a small space with 4 other babies who scream and cry at random and wake my poor baby up. I'm not crazy about this hospital right now, though the surgeon who operated on her is very respected and experienced so it makes it all worth it. Here are some pictures of her right after the surgery last night. You can see how much better she is doing now.

Totally exhausted and traumatized but so beautiful

 

Cleft Palate Repair

This will be a short update since it is so late, but everything went well today. Ava's mouth is very sore right now and the bleeding hasn't stopped yet. She was coughing up a lot of blood earlier and it scared us a little, but she is stable now. Johns Hopkins only allows one parent in the PICU at night, so Morgan is there with her now. I am so grateful to him because the first night after surgery is the worst, and sometimes it is more than I can bear; especially being alone with nurses that aren't very attentive. We are so glad that things went smoothly, we love our little gal.

Update

This morning I woke up to this view in our backyard. So beautiful. It makes me feel like we live in a fairy-tale land. I tried to show Ava but she got distracted by a stuffed animal on the windowsill. I think she couldn't see that far away. How many deer do you see?

Ava has been quite flexible lately. I think she is experimenting with what she can do while being stuck in one place all the time. Tomorrow will be the end of the official 6 week healing time since her surgery. Her muscles have been really weak and she hasn't shown an interest in crawling or standing against things. Her legs usually just collapse, but she has just started using the jumper again which might help her gain some strength back.

Tomorrow is the big day for her cleft palate repair. The surgery will be at 3:15 in the afternoon. We are excited for it,  but tired of putting Ava through yet another traumatic ordeal. This is her 6th surgery in her first year of life. Next week is her birthday and I hope she will be feeling much better. Ava you are amazing! We couldn't ask for a better baby.

Somewhere In Between

Ava has been eating a lot more by mouth since her surgery!

So here we are. Trying to find the balance in things. Trying to make sense of what has happened and what still needs to happen and everything in between. Since day one of Ava's life we have been told by doctor after doctor to be careful with germs. At the beginning we were under strict orders not to expose Ava to anything for the first 3 months. Then, our ENT said to wait through the whole winter and not leave the house unless necessary. Spring came, but all of the issues with her spine and lungs crept up and the Pulmonologist and Orthopedic Specialists said to be just as careful. We thought after this last surgery, that we could loosen up more, but we spoke to 3 different pulmonologists and the message was still pretty clear; don't relax quite yet. But when? We don't know. Her lungs are still small. A lot of it is common sense but still hard; wash your hands before you touch her, don't let sick people near her, if you go anywhere public don't let people come closer than 3 feet. I really don't think they realize how hard this is. You have to treat people like they have the plague. You feel paranoid all the time and can't relax in public. You can't let Ava touch germy things; pretty much you can't really live life. Thats how it has been for 11 months now. AHHH! We have decided we need to find our own way to live and still be responsible "good" parents. It's difficult but we have attempted a few brief outings in the last week and it felt good. We especially need to keep her well for her upcoming surgery in 3 weeks. Ava is doing so much better now though. She seems a lot happier! I can't wait until we don't have to worry if she gets sick. What a liberating day.

What a difference VEPTR makes

Before and After

Here are Ava's X-rays. Before surgery, a lot of things were scrunched in a small space and are now more opened up. It also really helped the scoliosis and her ribs aren't so close together. When she gets her second Veptr on the other side it should help even more. She is doing well at home, but it is a little hard to get used to the guidelines they gave us for her holding and moving her. We aren't supposed to let her crawl or put any pressure on her arms for another month. That will be tough since she started doing those things before surgery. Tomorrow Morgan and I are going to take off her bandages for good and give her a bath, so I'm a bit nervous about that. 

Home at last

After being gone for 3 weeks, we are finally home! I am so tired so will post more tomorrow. We are all doing well and made it home safe and sound. Time to get our lives back in order.

New Baby

Day 12

Ava has been a little energizer bunny. For some reason she decided she doesn't need to sleep anymore. Morgan and I are loosing our minds a little bit. I think it's the combination of being stuck at the hospital, attached to machines, etc. But, they are talking about letting Ava go home tomorrow! They are pretty sure she won't need BiPAP for home. They say it's not uncommon to need a little help with BiPAP after the VEPTR because there can be some areas of collapse in the lungs, causing the lungs to not efficiently expel the carbon dioxide. Her levels have gone back to normal which is so great. I can't tell you how cute Ava has been in the last few days, but she is like a new baby in some ways. For one thing, she is taller because her spine is more straight, but she is also more smiley and alive in general. She also doesn't seem to be struggling to breathe as much. When she cries and gets really upset, she doesn't turn dusky. I can't believe it. It's amazing.

Go to Sleep!

Day 11

Ava woke up at 5:30 this morning and  didn't go to sleep until 10:30 p.m. (17 hours) .We tried everything all day and she was just wired. They say it is withdrawal. She didn't have BiPAP all day as a test run to see how she would do without it. She did great. She was so cute all day, but had to be held the whole time, because she would throw a fit. They told us to keep her pretty calm for her test run, so crying it out wasn't really an option. That was challenging. We will see what the Docs say tomorrow. She may be going home pretty soon! Goodnight.

Even Better

Day 10

Today was the first day Ava smiled and laughed. She was much more herself today. She got to have 3 breaks from the BiPAP  and loved every minute of it. She still has to have it, but her carbon dioxide levels have gone down to a very good level. We are so grateful for that. We will have to see if she can keep her levels down without the mask, if not than she will have to have it at night. She was a lot more active today(compared to laying around in bed) She sat up quite a bit, and even stood up when leaning against me. We have to be careful not to push her to hard because she is still very weak and shaky. Her pain seems to be pretty much under control now. She is still on tylenol and one other medication, but she hasn't had to have morphine since thursday. She might be having a little withdrawal from it, but nothing too extreme. We are planning on posting her x-rays soon, to show how much the VEPTR has changed her. It will take around 6 weeks for her to get back to normal, but in the mean time she will have to get her cleft palate repaired. Poor girl. So many surgeries in such a short time! One day she will catch up, but she is doing so well developmentally for all of the setbacks. She was talking a lot more tonight and we were all having a grand time. I'm so glad things are looking up.

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