2011 Heart Walk!

Yay!! We were able to make the heart walk this year. Something we have made an effort to do every year since I found out about the American Heart Association's Start Heart Walk here in Sacramento. Last year, we were so sad we had to miss out. Ava had her tummy surgery just a few days before the walk, and though no pain was expected, because of various reasons, there was a significant amount of pain and I made the decision as Ava's mommy to keep my girl home. It was such a bummer and I know a lot of people were disappointed, but Ava's health and comfort came first. This year though, Team Ava was back out there! The first year we did this walk, there was literally NO mention of the little kiddos affected by heart disease and stroke. But thanks to all the wonderful parents who have been raising awareness for their babies born with Heart Disease and suffering stroke(just like my Ava), CHD has such a presence at the Heart Walks. Not only that, but all monies my team, and many of the other teams, raise goes directly to funding for research on congenital heart disease. It's fantastic and makes me SO happy to see how far we have come in raising awareness for our tiny little heart heroes. Without this awareness and funding and the advances being made, not that many years ago the combination of complex CHD Ava was born with would not have been operable. YEAH for brighter futures for our babies! This walk has always been a very special day for me. The first year we did it, my goal was to gather family and friends to show our support for Ava but also to help make a voice for our heart kiddos. Just a few years later, Ava gets SO jazzed about the walk and you can just SEE how special it is to her. She may not fully grasp why we are all there but she KNOWS it is for her and her incredible little heart. Ava went to bed the night before the walk talking about it and woke up picking up right where she left off. Her eyes were so wide and she was so happy and had a blast running around from tent to tent, getting face paint, balloons, and participating in hula contests after the walk. Ava saw her best friend Miss Maddie, who is the same age as Ava, was also born with the exact same genetic disorder as Ava and though different, was also born with congenital heart disease. Their little lives have mirrored each others so many times, I feel so blessed to have Maddies mommy Michelle there exactly when I need her because she knows EXACTLY what I am going through. She can relate. She gets it. She just knows. And she has been a lifesaver on more than one occasion. Ava and Maddie hardly get to see each other thanks to ridiculous schedules on both sides, but they have some kind of amazing bond, and each time they do see each other their eyes light up and smiles come out along with great big hugs. It's adorable and I know this family was put in our lives for a reason, this little friend of Ava's is going to be there for her as she grows and much like her mama has done for me, will be an unparalleled source of strength and understanding. I need to again thank ALL those who have come out year after year(with even a few of you amazing people showing up last year in our spot). For understanding why this is so important to me and special for Ava to be a part of and look back on. For making time in your very busy schedules for a few hours once a year to walk for a little girl who has gone though so much in her life and has so much love and joy and happiness in everything she does, and for everyone she knows. Thank you for helping me raise Ava to be proud of her journey, that beautiful scar, and realize how incredibly strong and admirable she is. I couldn't do it without you all! xox, see you next year!! :)

Back to School, 2011

This year Miss Ava starts Kindergarten and her brother G started JUNIOR HIGH. I cannot believe how fast they are growing up! In previous years, I have gotten up extremely early, gotten the kids up way earlier than they needed to, all in order to get those "perfect" first day of school shots. This year, I decided I would get them AFTER school. Less hectic first day of school mornings are SO the way to go. Now I still got up ridiculously early, got myself ready and made a traditional huge breakfast for my lovies. I still followed Ava to class and got a few classic first day classroom photos, but she thinks it's super cool to be followed by momarazzi, her brother sadly no longer share that belief. Then later that evening I took the kiddos up to the neighborhood park and got some obligatory shots. My son is so over photos that it is nearly impossible to get many of him, but he allowed for a couple, bless his generous soul. I started the tradition with Ava last year of writing her school grade/year on a mini chalkboard as a cute way to document each new school year, so wish I would have thought of this when Greg was younger and more willing. :) Anyhow, both kids had wonderful first day experiences at their new schools, and I am full of hope for a happy and successful year full of new experiences and knowledge. I remember when Ava was so small and sick, and truly wondering if we would ever be fortunate enough to experience these milestones with her. Now here she is thriving and happy as can be! If there is one thing I am most thankful for after going through such an experience as Ava's first few months of life were, it has honestly opened my eyes to all the little blessings many of us(me included) take for granted. I now know JUST how lucky I am and I cherish every last moment, because they are moments I had only hoped for and dreamed of a few short years ago. :)

Summer Vacation, Fort Bragg Style

We took a few day mini trip up to Fort Bragg this summer. We stayed right on the beach as to maximize our time enjoying the coast. It was so pretty! I had never been to Fort Bragg before nor had Ava, G had been there a few years ago with his Grandparents so it was our first trip together as a family. I had no idea what to expect, luckily I LOVED it up there. The kiddos especially loved having the beach right outside our room. Aside from some heavy fog in the morning hours, which is totally to be expected, the sun came out and the weather was perfect! I don't think it got higher than low 70's while we were there. A welcome break from the near 100 temps in Sacramento. We took lots of walks, found quite a few beaches, but our favorite was the one located right at our hotel, and definitely where we spent the most time. A few photos...

A special wish...

When we were still under the impression that Ava was going to need a third open heart surgery this year, I decided to contact Make A Wish. The prior two years had been full of hospitalizations and procedures and surgery, so with this next big one coming up I felt that it was the PERFECT time for Ava to have something fun and magical to look forward to. Of course, we soon found out that surgery could be postponed a few years with some more stenting and ballooning. I considered contacting Make A Wish and seeing if I could put a hold on the process(I truly thought Ava might be a bit too young still to be able to come up with ONE true wish), but Ava had already caught wind of it all and judging by her total excitement there really was no turning back!

Ava seemed to instantly know exactly what she wanted, and her wish would come as no surprise to anyone who has spent even 5 seconds with this girl. She wanted to meet Cinderella and visit Cinderella's castle. Her wish from day to day would slightly vary, she talked of eating ice cream with Cinderella and Prince Charming, she talked of dancing with them, going bowling in the castle with Cinderella, etc, but one thing never changed, this girl wanted to meet her favorite princess, Cinderella. Once all the paperwork was completed we had to wait for Ava's pediatrician to give the official okay and then Ava was invited to the Wishing Place where she would make her wish known. The wishing place is seriously magical all on it's own. Unfortunately I did not take photos. I just wanted to for once be in the moment with my kiddos instead of living the moment behind the lens. I am kind of bummed I don't have photos of this magical moment for Ava, BUT I also don't regret my decision at all.

Everyone at Make A Wish is wonderful and so thoughtful. They called us prior to the meet to find out both kids favorite activities, foods, etc. So once we got there they had a gift for Ava(Cinderella doll) and some of the favorite foods for the kids(which happened to be ice cream and water, hah).

Once the kids were loaded up on unlimited ice cream, we all sat and watched a video on the wish making process. After the video and any questions, one of the volunteers took Greg and I to a semi-separate room where we filled out more paperwork, answered any questions, while another volunteer walked Ava through the wish process with visual guides at different stations, and at each station Ava would write down a different wish(though hers all came back to Cinderella). Ava's brother stayed with her and sort of acted as a translator when needed. Though we did overhear him try to coax his sissy into asking for a cat or dog at least once. Hah!

Once we were all done, we gathered together again and they showed me what Ava had written down as her wishes, and if there was anything we as her parents did not approve of. Since Ava's wishes were all so similar we had to sort of use them as inspiration to come up with at least one "back up" wish. Ava's official wish was to meet Cinderella and stay the night in her castle. The back up wish was a shopping spree at the disneystore, limo, dinner, etc.

At the Wishing Place, they have this locked room that the wish child is given a key to. So once their wish is known and written down, they go to the door, use their key and open the door. As soon as they do, the whole room lights up(in their favorite color, to boot!) and in the middle of the room is the wishing well. They place their wish in the well and once they do music starts playing and everyone dances. Mega cuteness. The wish kiddo gets to hold on to their key for later use. ;)

So after all that, we were given a tour of the rest of the place, asked any questions we had and then were on our ways!

A couple of weeks later, we received the call, Ava's wish had officially been granted!!! Unfortunately, the spending the night in Cinderella's castle is impossible, as Disney only makes the suite available for promotions, but Ava will be given a tour, as well as a private meet and greet with Cinderella! I did manage to snap a photo of Ava being told the news...




Yeah, I definitely made the right decision in moving on with the wishing process. Since the call, not a single day has gone by that Ava hasn't mentioned her wish, in detail. Not a single image of a castle has been seen without mention of Ava's wish again, being told in full detail. From the plane ride to what dress she is going to wear on what day, to what she is going to say to Cinderella and how many hugs she is going to give her, this girl couldn't be more thrilled. It is so special. Though seeing the huge ear to ear smiles and twinkly eyes now at the mention of Disney world is pretty breathtaking, I can only imagine what it is going to be like once we arrive. And honestly, I couldn't think of a more deserving little princess. :)

Preschool Promotion!

Can I take it down sappy mama lane for a second and just start off saying how unbelievably lucky I feel to have been blessed with both my children?! They are seriously the two best mini humans I have ever known. Ava has now officially completed her Preschool Chapter, and is SO ready to move on to Kindergarten! Thursday was the final day of school at that little corner classroom at Schweitzer Elementary with three of the BEST Preschool Teachers in existence. So, to celebrate the kids moving up to Kindergarten, Ava's teachers put together a little promotion celebration. The kids were given caps, promotion certificates and showed us what they had been learning in Education Through Music(Ava's favorite part, she comes home and sings the songs she learns for hours on end! It really is the cutest thing ever, except for the times she has tried to replace my alarm clock at 4am with said songs). After the kids received their certificates, there were cupcakes which had each of the little grad's name on them, beverages and socializing.

A few months ago, I would of been pretty nervous FOR Ava, because this was the sort of thing that set her into anxious fear mode. She would of started crying the minute parents started arriving, and would of been inconsolable and hiding her face in my shoulder the entire time. So when we arrived Thursday and saw Ava's face light up as she smiled and waved but remained seated and calm, it was simply the best feeling. Seeing her be able to enjoy activites she loves, without anxiety or fear, is priceless. I am truly thankful to the fellow heart mama who lead us down the all natural remedy path for Ava's anxiety. It has done INCREDIBLE things and freed Ava of that at times crippling anxiety beast.

So here we are, five years on this unbelievable journey, and another chapter in the books. Another milestone. Another memory. Another blessing. Congratulations, baby girl, this is only the beginning of what is sure to be an exciting, challenging, and rewarding time in your education. Thanks to the three remarkable group of ladies we called Ava's preschool teachers for the last two years, I am confident my daughter got the best start possible. We are going to miss Ms. Pat, Ms. Sigrid and Ms. June tremendously!

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!