My Miracle

Today is Ava's 5 year heartaversary. Meaning, five years ago today, an amazing surgeon "fixed" Ava's itty bitty, tiny sick little heart. He gave her a chance at life that otherwise wouldn't of been possible. Five years plus one week ago, we were told our daughter wouldn't survive past a few days without this surgery.Five years plus one week ago, we were told that even with this surgery, a happy ending was not promised. Ava was born with several severe congenital heart defects, the combination of these specific defects, we were told, was quite rare and very complicated. Five years ago today, I only prayed that I would be celebrating this day.

Ava has overcome so much. Two open heart surgeries, such bumpy and scary recoveries, multiple other surgeries and procedures, a stroke in the OR during her first repair, illness, failure to thrive, paralyzed vocal chords, feeding tubes, collapsing lungs, etc. She still faces more open heart surgery, more cardiac catheterizations, more unforeseen "bumps" no doubt, but she is here, she is happy, she is thriving, she is so full of life and love that it takes my breath away and makes it impossible to focus on the bad. We will never know what tomorrow holds. But we have today, and today is a miracle worth celebrating.

Cardiac Cath Update.

So perky for 5 in the morning, isn't she! Ava's cardiac cath went down on March 14th without a hitch! We arrived at UCD bright(actually it was dark...hmph) and early, coffee-free because if Miss Ava is fasting for a procedure, we ALL fast for a procedure, forgot our paperwork(first time EVER) and waited around in the recovery area for a good two hours before being taken back to the cath lab. While we waited and since we forgot our paperwork, Ava gave Dr. Van Gundy the painting she made him, he showed it off to all the nurses. It was mega adorable, wish I would of gotten a photo! Thanks to Ava's amazing art skills, Dr. forgot to be mad at forgetful mom and dad. Score!

Ava was big huge smiles the entire time, talking up nurses and anyone else who would listen, watched movies and when the time came, drank every last drop of her "happy juice" (I STILL really believe parents should be able to partake in the happy juice happy hour experience as well...). After that, Ava got a bit loopy and sleepy. Once the time finally came to make the HUGE trek to the cath lab, which has recently moved and is clear across the hospital from where they had us, Ava became apprehensive and nervous. We got to the hallway outside of the cath room and once Ava saw the doors to the room open, she freaked out a little bit. :( One of the anesthesiologists mentioned that they need to up her dose of happy juice because the WHOLE point of it is to calm and relax them. That hasn't ever really worked with Ava. She knew what that room meant and told me she didn't want to go "ni-ni." Just slightly heartbreaking. I asked Greg to step in and take Ava into the room this time, it's really my least favorite part of these caths and I didn't feel strong enough for it this time. Once Ava was asleep and situated we returned to the waiting area. Dr Van Gundy met us there a little after 12pm and let us know that everything went VERY well, Ava was her usual rockstar self and there were no surprises. He was able to open her LPA stent from 5 to 8(making her artery that of a young adults) and that eventually he wants to go back in and balloon her right side, but NOT now. He was very optimistic that this will alleviate the leaking conduit situation and put off the need to replace the conduit to a larger one via open heart surgery. Happy dance! Happy tears! Happy mama!!




Ava is TERRIFIED of gas masks, but gladly used it on her pillow pet, "Lub"

Watching a movie before the procedure. All smiles. :)

Daddy and Ava before going into the cath room.

My girl after the procedure. Very mad, distrusting(wouldn't make eye contact with anyone or eat/drink anything), and in discomfort. So brave, though!

From January 11, 2011 when we heard that Ava was in need of her third OHS because her conduit was leaking and heart enlargement, along with other unsavory side affects were an issue if not fixed pronto, to a few weeks later when we learned that stenting via cath may be an option, to a rescheduled cath because of a staff shortage, to March 14, 2011 and a very successful catheterization thanks in huge part to our INCREDIBLE pediatric cardiologist, I have been a huge blob of stress and optimism and emotion and worry and fret and unease and downright anger. Ava had been home for over a month, missing school, ballet, playdates with friends, birthday parties, the park. It has been trying, but everything worked out for the best and I couldn't be more thankful that we are now back to our chaotic norm. :)

Tomorrow is Ava's followup at the pediatric cardiologist. It should be a pretty short and uneventful appointment, if there is anything significant to report on, I will update everyone then. Thanks time a bagillion to all of our amazing family and friends who send prayers, hugs, vibes, chants, thoughts, love our way the last few months. Ava has so many people who care about her, it's humbling. We appreciate all of you.


Ava one week later, after her first day back to school, happy girl! Something I have learned and continue to struggle to learn on this journey is, it never really gets easier. I think every parent can claim the same. Though my children's smiles sure make each individually trying journey they lead me on SO rewarding. :)

Surgery?

So. As many of us already know, Ava had her 6month echo cardiogram and followup in early January. Her cardiologist's immediate thought on viewing the echo results was that Ava was in need of another open heart surgery to replace her conduit with a larger one. He said there was some significant regurgitation going on, which was concerning.

The way things work with our doctors is, her cardiologist "presents" her "case" at a conference they have weekly. Together the team of doctors and surgeons come up with the best plan for the child and their condition. What the doctors all decided was that they want to try to further stent Ava's stenotic pulmonary arteries first. The hope is this will help compensate and hopefully put off surgery for a couple more years. Sounds good to me!!

So Ava's precath appointment is this Wednesday, with the actual cath a week later. We will be visiting the Cath Lab at the UC Davis Med Center, yet again. Ava will be first case, and as usual they tell you to expect to stay overnight, though the only time we had to actually stay overnight was when the stent became dislodged had to be "relocated." That isn't going to happen again, though. Positive thoughts ahoy, this needs to work the first time! This will be Ava's 5th Heart Catheterization in the last two years(double that total) and little miss deserves a BREAK! So bring on the happy thoughts, prayers, etc for a successful cath and perfectly placed stents. Yay! :)

I will update after the 16th, once we are home and rested.

Playing catch up - Ava's First Recital

You know those instant images that flood your brain when you get the news you are having a little girl?! One of those, for me at least, was attending my daughter's first recital. Ava first started showing a desire for dance, and specifically ballet, after she watched an episode of Max and Ruby. Ruby, the older sister, receives a ballet bar for her birthday and practices some moves with her friends. Ava. Fell. In. LOVE. Next came Angelina Ballerina. The girl officially became obsessed. So much that I started looking into classes. We were originally going to enroll Ava at a place in Folsom, but LUCKILY right before enrolling I found out about an awesome and new place much closer to home, right down the street, really. They let us attend a few classes free, to see if the instructor and time was a good fit for Ava. It was. ;)

The first few classes, Ava was very apprehensive and anxious. We had to sit in class with her, but by the end of the class she was joining in with the other girls and learning all sorts of new moves and terminology. It was love at first position. ;)


So fast forward a few months and Miss Ava is getting ready for her first recital! The costume is fitted and purchased. Tickets are sold, flowers are purchased, family and friends are ready to attend, my camcorder and camera are charged and ready to go and Miss Ava has been practicing her routine like crazy, anytime, anywhere!













My little CHD miracle girl ROCKED it!! She totally overcame her fears of new situations/too much attention, went out on that stage, danced her little heart out and totally enjoyed every single second of it.

Playing catch up - Thanksgiving

I love Thanksgiving. I mean, I have SO much to be thankful for, it is a holiday all about family and yummy food. Score! This year, we spent Thanksgiving in Lincoln with Greg's family. The weather was brisk but still beautiful. We played football outside(tradition)and Ava had fun making a mess of the neighbor's clean stack of leaves. :)

See the cute turkey hat? Ava helped me make this. We kind of free handed it using felt and LOTS of glue, and in the end when that wasn't quite holding, staples. Don't judge. It worked in the end and Miss Ava rocked this hat ALL day, even tried to wear it to bed. I would call that first attempt at a free handed turkey hat SUCCESS!

Playing catch up - Apple Hill & Bishop's Pumpkin Patch

We actually took our annual trip to Apple Hill the week before Halloween, but who's counting. The trip was fun, the kiddos went on a train ride, we ate apple donuts and drank apple cider. Ava got her face painted. G only mildly complained of how boring this place was. ;) The weather was awesome and I got some cute shots of the kiddos. Day trip to Apple Hill success!!









We also made our annual trip out to Bishop's Pumpkin Farm out in Woodland. It's a good 45minute drive, but there is SO much for the kids to do and lots of pumpkins to pick from. :) Each kiddo picked out their perfect pumpkin and had fun running through the pumpkin fields like the lil maniacs they are. It was also ridiculously windy out though...

Playing catch up- Halloween 2010!

It's pretty difficult to go months back and remember cute little details of every event. Luckily I have photos, always LOTS of photos, but I really need to commit to making time weekly to keep this blog updated. I started this blog as a way for Ava to have something tangible and accurate of what a truly incredible journey she has lead us on, how we have grown together as a family, and how her story has affected those who meet her. Also, this blog is a great means of communication for family and friends, a way for me to get all the facts and updates out there without numerous phone calls and repeated conversations. So the following few posts will be simple updates as to what has been going on in the world of Ava since the last time I was regularly posting, which was September of 2010. Eek! But once I am all caught up I promise to bring back the weekly updates. :) I hope....

For Halloween Miss Ava was a bit indecisive, she went from wanting to be Jessie from Toy Story, to Buzz Lightyear, to a Princess, to Minnie Mouse. She finally settled on Minnie, and was SO adorable! Ava even got to wear her Minnie costume to her ballet class, major cuteness overload...






See, if that isn't the most perfect lil Minnie I have ever seen, and I am not at all biased. ;) I even have video of the cuteness. This was the girl's first run through of their Winter Program recital, those who attended will see how much progress Miss Ava made from the end of October to the date of the recital. Proud of her!




The day before Halloween, we carved pumpkins. Ava chose.......Minnie Mouse. G chose Jack Skellington(woo!). The jack o lanterns turned out great!








On to Halloween though, the kids had so much fun. Starting with breakfast, which consisted of (very yummy!) pumpkin flavored jack o lantern pancakes, we used chocolate chips for the eyes, nose and mouths. I think I found the recipe on the Martha Stewart website, just add a lil pumpkin puree to the pancake batter. Delicious. For dinner, we made mummies(hot dogs dressed in strips of crescent roll dough), monster mouths(apple wedges with slivered almonds for teeth), and mini mummy pizzas(english muffins, pizza sauce, pepperoni, string cheese and olives). After they helped me make our festive dinner, we took the kiddos out trick or treating. Ava's brother Greg was dressed as Brian Wilson. He ROCKED that beard, and the big perk of that costume was getting game updates at almost every door. :)














Hope everyone else had a spooktacular Halloween!

1/11/11 was a seriously overrated day.

Because it was the day we received the results of Miss Ava's echo from the week prior. Ava's doctor let us know that what he saw was very concerning. There was "a lot" of regurgitation happening, and it was time to replace Ava's conduit. The risk of not treating this soon enough is an enlarged heart. We do not have a specific date yet, the doctors and surgeons from UC Davis Medical Center, UCSF Children's, and LPCH are going to conference on Ava's case first and come to an agreement on when would be best to proceed with the surgery. Open heart surgery. Ava's third one. The CHD world is so cruel and unfair. My daughter's biggest worry should be if she's going to dress as Cinderella or Snow White today after school, and what theme does she want for her upcoming 5th birthday party. We have not yet told Ava what is going on, she was there at the appointment of course, but she was too engrossed in her coloring book and stickers to pay much attention to the boring people discussing her precious little heart. I don't see any point in telling Ava now, not until we have a date set for surgery and even then probably not until a week or two prior. But we will gently let her know what is going to happen, and why. She already knows about her heart and thanks the doctors who "Fixed Aya's heart" all the time. I just want to make sure she has time to get comfortable with the idea, plus she will want to know why we are keeping her home from school.





I am sort of rambling on right now, my mind is still a jumbled mess. Plus, I haven't updated this blog in forever! But I wanted everyone to know what was going on. I also included a few photos, taken yesterday. :)
As soon as we have a date, I will update again, maybe even with some coherent thoughts! ;)

Tummy Surgery

So little miss had her surgery last Thursday, the 16th. We were up bright and early and made our way to UCD, now usually it is an absolute MUST to make the stop for this Mama's morning necessity, Starbucks. BUT, one since little miss was npo since 10pm the night prior and two, she actually eats and drinks regularly now and would totally know mama was being a meanie and indulging(I just consider it surviving, but whatever...) right in front of her, I put off my coffee fix until after my girlie was taken back. The plus side to this terrible way to start your day at 4am is that there is a La Bou(<3) directly across the street from the hospital, yay!

Okay, I guess I digressed a bit. So we arrive to the hospital, only to find that they FINALLY finished the new part of the building making this maze of a hospital even more confusing, but pretty! We eventually find where we need to "check in" which is a little room full of very groggy, very grumpy people who instantly started yelling at us how we were BEHIND them, there aren't even numbers so you need to know who is behind and in front of you in the nonexistent line, etc. Suffices to say, none of these grumps had a Starbucks in their hands either, or it may of been an entirely different scene. One full of rainbows and sunshine. Eventually we make it to the front of the "line" and get checked in and directed on where to go, as if we didn't already know. ;)

So we waited in the little waiting room, Ava was very aware of what was going on at this point. And on previous "trips" Ava would by now be crying and hysterical, but we had been lightly discussing with her how we would be going to the hospital and the doctors would be fixing her belly, which has been hurting for weeks so she was really OKAY with that. Ava was still scared and didn't want anyone she didn't know getting anywhere near her, but I am so glad she seemed a little more at ease this time. Seeing your child terrified at an age where they are too young to understand you are trying to help them is just a sucky feeling. Once we were taken to Ava's bed in the recovery area(where they bring the kiddos back to after their surgery/procedures), the nurses, one of which Ava had during her 2 month stay up on the 7th floor in the PICU when she was a newborn, tried to make missy as happy and comfortable as possible. They got her a portable DVD player and some movies, when it was time to take stats they would do what they needed to do to Ava on Ava's snow white doll she brought with her first, so Ava could see none of it hurt, Snow White even got a pulse ox ET finger just like Ava! ;) Everyone was calling Ava "Princess Ava" which made little miss ridiculously happy. Then it was finally time for the "happy juice" which is usually versed and sometimes another medication. I don't really understand why they do not give this once the bring the kiddos to the bed area, since that is when they all seem to freak out. Anyways, Ava took her happy juice and instantly exclaimed, "I'm Happy!!!" it was hilarious and really cute. If only it worked that quickly. ;) So then it was time to walk Ava to the drop off point and hand her over to the team. :( My least favorite part, I actually prefer how the cath team does it, they let you walk her all the way to the bed, lay her down and hold her and talk to her as they administer the sleepy mask. Though that is sometimes a little too traumatizing for mama, too. How come the parents don't get happy juice?!

The surgery took a total of an hour and a half, the awesome surgeon came out and let us know little miss did really well and everything went as expected. Ava took a bit of time to wake, but not as bad as last time where we were sitting there for HOURS and hours. Weird to me, considering how she used to wake from her anesthesia almost too quickly and the nurses were always scrambling to keep her properly sedated.

Then, apparently there were absolutely NO beds on the floor and we were stuck in recovery ALL day, until about 4:30pm I believe. It wasn't the greatest time ever. And there was even talk of having to hole it up in the new PICU for the night, no thank you. Luckily a bed opened though and we made our way up to the 7th floor. Ava even had the window side of the room. ;) The rest of the night and the next morning were completely uneventful. Except that Ava was in a LOT of pain, the morphine she was being given caused her to drop her temp a little and become a bit clammy, not to mention sleepy. Almost every 4 hours on the mark the pain would break through the medication, but missy wasn't admitting to any pain. We had to take cues from her body such as the elevated heart rate, beads of sweat forming all over her, plus the fact that she didn't want to sit up, walk or even MOVE. I felt so bad for her, we had NO idea this surgery was so involved. When we were told she would need it the doctors explained it like it is usually an outpatient procedure and no big thing. No mention of NPO for 24hrs post op, no mention of no food for 48 hours post op, definitely no mention of the pain involved, which I honestly should of guessed anyways. But my little trooper pulled through and we were discharged Friday evening. After we got our missy home and settled in I instantly went about trying to notify everyone of Ava's condition and how it would be impossible to expect her to participate the next morning in our FAVORITE event of the year, the American Heart Association's Start Heart Walk. Making sure Ava healed and took to food okay the next day was much more important, though. Thanks to all who understood and send us their well wishes, prayers and thoughts! They helped so much.

So now for Ava's belly, I still have not seen the incision, it is covered with a bandage and under that is a few steristrips, which should fall off in a couple of weeks. Ava isn't too limited on activities, but she shouldn't be hanging off bars, or jumping(which she HAS been doing! But we had a good talk today about that and I explained that she could hurt her belly again and we would have to go back to the hospital for the doctors to fix that, she didn't want any of that so she promised no more jumping for now). And by now her appetite has pretty much come back to where it normally is. She is sleeping better, but still waking up lots and is a little more clingy than usual. She is also going through her normal routine of not listening and being a bit bossy, something she does every time she is hospitalized, but by now at least we know how to tame the diva and bring her back down a few levels. ;)

Here are a few photos taken with my phone, just didn't feel like lugging out my camera...

Still in recovery, just waking and not happy!

Ava's brave girl gift, a Pillow Pet! :)

Wagon ride with her new BFF.

Sunday afternoon, so much happier. Color was back, appetite was back and pain was subsiding. Miss Ava is such a tough cookie!

Children's Miracle Network/UC Davis Children's Hospital Kid's Day at the Capital Air Show!

This year, we were invited to watch the practice day for the California Capital Airshow. It was actually both kid's first time to see the show, so we were all pretty excited. They had a check in desk just outside the entrance where Ava and Greg were given goodie bags full of stuff like a poster of the Airshow, a sharpie(?) sunscreen, and a few other things that I can't recall. :P We also had a family photo taken and a free print given to us, super neat since I rarely get a photo with us all since I am the one taking the photos! So we found a table up close to the gates for a great view once the show began. Instantly people were bringing us food(a catered lunch by Chipotle, yum) and some really yummy strawberry lemonade curtesy of Red Robin.

The airshow began, both kids were glued to the sky. But once the louder planes came out, Ava was over it. Luckily a woman at a nearby table gave us an extra set of earplugs that had been passed out and we had somehow missed out on. Thank you lady at neighboring table. :) There was also face painting which Ava was excited about, she of course got a heart and some flowers on her cheek, really cute but didn't last very long. After the show, we stayed probably over an hour longer and toured as many planes as possible. The kids went in and got an upclose view on many of the aircrafts, Ava of course called the ones she liked most, "Ayas airpane" and wasn't too pleased when we nixed her thought of flying them herself. ;)

The face paint, hard to see.











Why not dance?

Hugs.



All in all, it was a super great day and we are very thankful to UCD and the Children's Miracle Network for putting it all together!