Ava's Journey

Make A Wish Celebration

2012-01-27T11:53:00.000-08:00

Not actually sure if I updated that Ava's wish had been granted, but it was! Part of the process once the wish has been granted is Make A Wish provides a celebration party for 20 of our closest friends and family. Initially I didn't realize there was a limit on the amount of people who could attend so me and my big mouth went and told everyone, sorry. Make a Wish takes care of and provides everything! They ask Ava what kind of food she would like at her party, her response of course was pizza and salad and sprite! There were little toys and activities for the kiddos, cute decorations, etc. It was wonderful. Some lovely Make A Wish workers also gave Ava a (Make a Wish logo)backpack full of awesome gifts. There was a Make A Wish tee and cap for Ava, lots of coloring books, card games, crayons, etc for the plane ride. They are so thoughtful! Ava's Gamma Trish found the sweetest most perfect little Minnie Mouse pillow pet that Ava snuggled up with on the plane and has been using since. :) Later on, Greg and I were taken aside to go over the trip itinerary(exciting!), review the budget, discuss any questions we may have, etc. Seeing the itinerary made everything so real. How much work this organization had put into Ava's wish, how all these people come together and make magic happen for SO MANY deserving kiddos and their families, I was completely overwhelmed with gratitude. It was such a rewarding day. To be a part of Ava's biggest wish in the entire world coming true, to see her full of happy and excited smiles, running around with her friends and having fun without a care in the world, and to be surrounded by family and friends. Good stuff.

Crazy kiddos :)

Party Girl

Ava with our awesome Wish Coordinators :)

She's sooo excited!

So, we had also contacted Icing Smiles and my original intention was for there to be a cake for each of the kiddos, a Harry Potter one for G, and a Cinderella themed one for Ava. That way they both had their own little special bit. But because of the time restraints we were only able to get Ava's cake request in. Which is okay, saves that special cake for G's birthday next month. :) Anyhow, a very special woman, Tessa, from The Frosted Cake Shop in Midtown Sacramento, offered to make this cake for Ava and she did such an incredible job!! I was blown away by how much detail she put into it and just how sweet she was through all correspondence. She is so genuinely kind and really cared about what Ava wanted. Plus, aside from being the most gorgeous cake I have ever seen, it was just plain yummy! I would absolutely recommend her business to all local friends and family.

Dress inspired by Cinderella's Dress --love!

Ava had a blast being the center of attention surrounded by her friends and family. I am very thankful to those who attended and appreciated what a very special and once in a lifetime moment this was and will always be for Ava. Thank you for celebrating Ava's special wish with us, she will always have the treasured memories of those who shared those moments with her. :)

Almost everyone in attendance that day :)

2011 Winter Recital!

2012-01-26T13:57:00.000-08:00

Ava had her second dance recital in December. The girls start practicing before Halloween, so this has been a much anticipated date. Last year was Ava's first year in dance, and her first recital, which was ballet. This year, the girls were to perform a tap routine. The costumes were absolutely adorable and reminded me of a colorful Shirley Temple style. Which matched the ordered hairstyle, ringlets! Yes, I get slightly excited myself this time of year. I adore watching the girls from their first run through of the routine and seeing how much they improve from week to week to the day of the recital! Plus, ordering the new dress, working on the hairstyle, ordering flowers, etc etc etc. It's just so fun! And something I am so thankful that Ava is able to do and truly enjoy!

Anyhow, she killed it. All three girls did. You could see their pure joy on stage, which is the best part! Part of what I adore about Fliptastic is how they keep it simple and about the kids. There isn't these huge larger than life productions and props that our kids are fighting to not get lost in. They do not require makeup(which many dance studios DO), no fake hair or any of that garbage, just some super talented kiddos out on stage having the time of their lives! I am so proud of them! Thank you to all of our family and friends who came to cheer Ava on, we filled a LOT of seats and Ava so enjoyed seeing her cheering team there to root her on. :) Can't wait until the next one!

Sissy and Brother

Ava and her boyfriend, Logan :)

Ava acting coy after her performance. :)

Pro Pic -- The girls

Pro Pic -- Ava

Cardiologist Updates -- Sept-November 2011

2012-01-26T10:57:00.000-08:00

As you can probably tell by the photo, Ava has grown to LOVE visiting her cardiologist. She frequently asks to go see him, and is always SO excited when it's time. Such a wonderful, but very vast change from when she was terrified and inconsolable any time we had to go to any doctor's office. I LOVE it! So, starting in September, we were noticing Ava's hands turning blue or purple and along with that she was complaining of pain. We set up an appointment with her cardiologist of course, who couldn't find anything wrong and honestly didn't have an explanation for the pain. He ordered a few labs for some non heart related issues it could be, and ordered up an EKG and ECHO. We were also sent an event monitor to hook Ava up to at home the next time it happened, it wasn't the one you were 24 hours because it wasn't happening daily. Anyhow, of course(and luckily!) by the time we were sent the monitor in the mail, the events had already stopped. Ava was already scheduled for her six month echo and ekg so those were still done.

We went back in October for the ECHO. Ava did great! She layed down with me and watched Dora Saves the Mermaids, as she always does, while our favorite echo tech did her thing. The echos are about a 20-30 minute process. We unfortunately do not get results of the echo same day, we have to wait for a followup appointment.

So back to the Cardiologist's it was in November to hear the results of the echo. Results were, everything looks good, the conduit is still leaky(duh) but the stenting did help out. It is the general consensus amongst Ava's team of doctors and surgeons that she will need her next open heart within a year. I have known about this looming third OHS for what feels like EVER now. But hearing a YEAR, kind of knocked the wind right out of me. With all that being said, Greg and I are hoping to inquire about doing the surgery this summer, while she is out of school so that there will PLENTY of time for her to heal and for her little chest to completely heal before being back at school and away from my watchful(overprotective) eye. I don't wish to rush this surgery, but at the same time I do not want Ava to have to miss months of school or put off the surgery so long that it becomes a dire need and I have to watch her health deteriorate. We go back for Ava's six month Cardiology check up in a few months, we will be asking lots of questions, getting new echos and a new picture of how things look, then.

EKG

ECHO

Typical Ava Face :)

So not ready to have to explain to Ava why she has to go through this all again, for her to be in pain and have little I can do to ease it, to call a hospital our home again, so not ready to hand my baby over to trusted hands of her surgeon and nurses, but I am absolutely ready to not have this surgery looming over our heads like it has the past two+ years and to not have to deal with another OHS for YEARS to come after that, god willing. :)

Catching up -- Halloween Class Party 2011

2012-01-26T09:29:00.000-08:00

All year(literally) Ava goes back and forth on what she will be for Halloween. It starts the day after Halloween and continues to change just a week or two before Halloween. If she sees a commercial for a new toy, she wants to be that for Halloween, falls in love with a new song, she wants to be the singer for Halloween, finds a new animal to learn and obsess over, yeah, Halloween. It's hilarious and has been going on for the last three years now. It's even more fun considering Ava's pretty extensive dress up collection and how often she utilizes it. Which is to say, VERY OFTEN. You would think Halloween, a day of dressing up, basically, would just not be a big deal to her. It's like any other day in her life, with the added bonus of candy, but she honestly doesn't make all that big of a deal about the candy. She just cracks me up!

So, this year Ava was able to dress up at school for Halloween. I am SO glad her school is one of the lasts who still allow Kindergartners to dress up and celebrate such a fun holiday for children. Almost every child in her class was dressed up, and if a child didn't have a costume, the teachers dug into the class dress up bins and provided one so no one would feel left out. LOVE that! I volunteered in her class that day so I could witness all the cuteness. :) All of the Kindergarten classes went on a parade to each classroom, where they were introduced and walked through the classes, SO CUTE. And it just so happened to be Ava's brother's first day at this school(we made the decision to move him back to elementary school, he was at a middle school but is in 6th grade) so she was really excited to get to his class, one of the last ones visited, and as she told us, give him a big hug! Well, we got to his class, and in typical Ava and brother form, she passed on the hug and instead opted for a (playful) punch, right in front of all his new classmates. Hah! Way to make a first impression for the poor kiddo, Ava! :)After the parade, there was a cute, interactive puppet show and story time for all the Kindergartners. Ava really enjoyed it. Then after the show, her class went back to their room and had a fun party. The teachers had activities for them, and of course cookies, cupcakes and juice. What Kindergarten class party is complete without these essentials?! ;) Ava had a wonderful time and I enjoyed being able to attend and help out and of course capture a few moments.

After a fun class activity. This would be jello disguised as brains!

Ava's Handmade Placemat. Her own Etsy account is next. ;)

Parade Dance Time ;)

Recess

Catching up -- Ava's first school field trip

2012-01-26T09:02:00.000-08:00

Last fall just before Halloween, Ava joined her class on a field trip to Fog Willow Pumpkin Farm. This was Ava's first field trip and first time riding on a school bus(HUGE deal for her! Funny story, she chose to sit with me on the ride down, but on the way back INSISTED that she sit on her own, banishing both Dad and I to seats alone) so she was very excited! Greg and I tagged along as parent volunteers, I was definitely not going to miss Ava's first field trip experience! :)

We had never visited this place before, but it was really cute and fun. There was a petting zoo, huge playground, hay rides, plenty of opportunities to pet and learn more about various farm animals, and of course, pumpkins!

Ava had a wonderful time, got to ride a school bus, learned how to make a haystack, had a picnic lunch with classmates, picked out her own pumpkin, went on a hayride, and she got up close and personal and learned so much about her favorite subject in the world, cute and fuzzy animals!

2011 Heart Walk!

2011-09-21T12:50:00.000-07:00

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

2011-09-06T10:26:00.000-07:00

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

2011-09-06T09:58:00.000-07:00

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...

2011-06-24T13:37:00.000-07:00

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!

2011-06-10T13:20:00.001-07:00

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

2011-05-30T09:08:00.000-07:00

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.

2011-03-23T09:40:00.000-07:00

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?

2011-02-06T15:53:00.001-08:00

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

2011-02-06T12:20:00.000-08:00

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

2011-02-06T11:18:00.000-08:00

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

2011-02-06T10:39:00.000-08:00

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!

2011-02-06T09:56:00.000-08:00

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.

2011-01-13T11:11:00.000-08:00

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

2010-09-21T21:15:00.000-07:00

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!

2010-09-13T20:33:00.001-07:00

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!

Little Worries

2010-09-09T21:51:00.000-07:00

A week from today we have to take our little miss in for surgery. I realize the surgery itself is such a minor thing, especially in the "World of CHD's" but the bottom line is, it's still surgery on my precious daughter. It is still anesthesia on a heart child. It is still yet another hospital visit full of fears and owies and strangers for a four year old who is more than old enough to be aware, but still not quite old enough to fully understand why.

The most frustrating part, for me, is that Ava is JUST starting to come back out of her shell, her anxiety in new situations and near panic attacks since the year of the 4 catheterizations has lessened dramatically. I am so worried that my happy loving trusting daughter is about to get jaded again. Four year olds just shouldn't have to deal with so much fear and anxiety. I think this is one of those drawbacks that isn't hugely talked about when you have a sick child. Because who wants to focus on something so "trivial" when your child is sick?

But it has to be done. And Miss Ava will feel so much better once it is done. So now that the fears are off my chest, it's time to focus on the positive. Ava is a strong, smart, brave little girl and is going to do amazing. This is such a milestone for her, as well. One we often times thought she may not ever reach. Not requiring a feeding tube, thriving, all on her own. It's time to celebrate Ava's accomplishments! ;)

The Yucky "S" word...

2010-08-26T19:13:00.000-07:00

Miss Ava has another surgery scheduled. September 16th. It is to remove the skin around her old mic-key site, close up the "hole" inside and stitch her skin back up. They told us at the appt we had to address the fact that for over a month after her mic-key was removed all was well and it seemed closed and healed but then one day started oozing and is not getting better on it's own, in fact seems to be irritating the surrounding skin no matter how often we try to keep the area clean, that this is usually an outpatient go home on the same day kind of deal. But when the scheduling lady called today she told us they almost NEVER send the patient home same day. We figured as much anyways, but still, BUMMER!!

Prayers, vibes, chants, wishes, etc, send them on over! For this to go according to plan, but also for Miss Ava to be granted a little piece of mind and comfort over the anxiety she gets anytime she is hospitalized. Typically Ava gets over her fears after a couple of hours, but in the meantime it is heartbreaking to watch your little one crying and looking at your with looks of "Why?" Plus, in all honestly, this girl is going to miss what she lovingly refers to as her "second belly button". ;)

What an accomplishment though. To be eating and growing and doing so well all on her own. So proud of our Ava!

Every Heart Has A Story...

2010-08-25T10:57:00.000-07:00

Ava was born on May 23, 2006. Six weeks early, but still considered full term. I was in labor for quite a bit of time, but only had to push 3 times. Besides my dr commenting on how much fluids there was, there was nothing at all uncommon or alerting about my pregnancy and delivery. Ava was born alert, pink, and gorgeous! It was love at first sight, all over again. That feeling you get when you first lock eyes with your child is indescribable, and when you hear women say they forget all the pain prior or how it was all worth it, they are not exaggerating, more like the understatement of the century! There is no higher high or greater joy.

We never would of guessed the secret Miss Ava was holding onto. How her arrival with a broken heart would make ours forever and completely whole, but not before taking us on the most terrifying 3 month long roller coaster of a ride we call life in the ICU.

Ava scored well on her APGARS, she came out crying, but was easily soothed in her mommy's arms. She was slow to feed, and we noticed milk would occasionally come out of her nose. Nurses assured us that some babies take longer to "get the hang" of things, especially since miss Ava made her debut a bit early. The doctor who examined Ava noted a murmur, but assured us, again, that it was probably harmless.

The next day we were told they were taking Ava to run a few harmless tests to be able to 100% count that murmur as harmless. Hours went by. Then Ava's pediatrician comes in and says we are discharged and free to go as soon as I sign the paperwork. I point blank asked about the murmur, he said it was just that, a murmur and nothing else. Something she will outgrow. SO much relief washed over me. It was all too good to be true, though. Later a new man walked through our hospital room door. He would not make eye contact with me and did not at all resemble a man delivering good news.

"Your daughter has a very serious condition. Her heart did not form properly. She has what is known as Hypoplastic Left Heart Syndrome, which is not compatible with life. You have two options, take her home and provide comfort care until she passes, which will be within weeks, or permit her to be transported to UCSF or LPCH, where she will undergo part one of a series of three corrective open heart surgeries. The surgery itself is risky and nothing is guaranteed. You need to make a decision quickly.

It was on that day that I found out what a CHD was, because my daughter was born with at least 4 out of over 30 possible ones. Once transported to UCSF, more tests were run and it was determined that Miss Ava actually had a more complex anatomy than previously thought. She had an interrupted aortic arch, VSD, ASD, and left ventricular outflow obstruction. Her surgeon told us he had never seen a case like Ava's. Not exactly the words that bring comfort and confidence to parents already in a state of shock and panic.

Ava remained "stable" and the plan was to allow her to spend a week hopefully gaining and becoming bigger and stronger for her surgery. The risks were pretty high, in this mama's opinion. 20% under "normal" circumstances, 25% in Ava's case. On Tuesday, May 30th 2006, I left my precious baby girl in the hands of strangers I would later come to know as angels, miracle workers. Ava was in surgery all day, and once back to her room, there were many complications. I still recall being told we could go back and see our daughter, but having to work out way through DOZENS of doctors, and her surgeon at her bedside yelling for us to come to her side, touch her, talk to her, let her know you are here, give her all the love you can. She was so tiny, the amount of machines she was hooked up to and wires coming out of her was worse than any gory scene in a scary movie. Each one of them was working to keep my very unstable daughter alive. She was losing blood faster than they could give her more. And he stats were all over the place. Nothing prepares you for this, what could.

Later we learned that Miss Ava suffered a stroke while down in the OR. The damage was significant. We were shown the scans. The specialist let us know that at this age, and with this kind of damage(location, etc), that the long term affects are impossible to guess. Her brain could not necessarily recover, but sort of compensate. The only thing to do was to never give up hope and focus on her, rather than the what ifs.

About a week later Ava's FISH test came back positive for the genetic disorder, 22q11.2. The absence of a thymus was detected by her surgeon, which meant Ava was at a greater risk for a compromised immune system. This genetic disorder also was more than likely the cause for Ava's heart defects. It was the reason she was having severe calcium issues, also.

My daughter finally became stable and on the road to a "full" recovery, and we were able to fulfill our dream of bringing her home to her own bed and having both our children under one roof, just one week shy of her 3 month mark. She was still only just over 7lbs, had a mic-key for feeding now due to paralyzed vocal chords(happened during repair), silent aspirations, poor swallow function, and failure to thrive. We were sent home with many machines, our room actually resembled our previous room at the hospital! The hospital send us home with a nurse who hooked up all the machines and made sure we knew how to use them(silly, I had been doing all this for weeks now). There was Ava's oxymetry probe, the kangaroo pump for feeds, oxygen, a suction machine, that machine that just blew air into Ava's lungs, forget the name of that one, and the very large, very loud,very evil, cpap machine. To this day I HATE cpap.

Hard to look back and realize there was so much going on for such a tiny little girl. Anyhow, once home our girl thrived and gained and became a very happy little miss. The machines one by one vanished, the continuous feeds became bolus, we all got back to a brand new state of "normal". Many of the hospital staff expected to see is within a month or two for Ava's second stage of surgery, but little miss surprised them all and continued to just do better and better. Her second state OHS didn't happen until a week after her first birthday, almost exactly a year from the first.

Everything was so different this time around. Even though her surgeon was able to do a DOUBLE VENTRICLE repair, Ava's second surgery time was still significantly shorter than the first one. And once were taken to see her, the only person in her room was her nurse! ONE person attending to my one year old who had just had her second open heart surgery. No machines buzzing, no frantic faces, just one calm nurse changing Ava's sheets and making sure her wires were all in place and not tangled up, because there was NOTHING else to do!! YAY!! What a wonderful blessing, what a strong little girl I have!

The recovery time was also dramatically less. We were discharged 2.5 weeks post op. Would of been a week sooner, but Miss Ava ended up requiring a pacer.

Since then, Ava has made so many milestones and become an inquisitive, precocious, adventurous, dramatic, cautious, brilliant, artistic, mischievous, naughty, loving, joyful 4 year old bundle of love! She is currently enrolled in preschool, has speech twice a week, sees her cardiologist every 6 months and tests mama's patience multiple times a day! :) Ava has played soccer, is now into ballet and tap and hopes to play tee ball next spring. Ava is obsessed with all things princess and sparkly, and bugs! We are promised nothing as parents with heart children, experience pain and sadness, joy and fear on levels impossible to explain. But I consider us the lucky ones, we have this life where we have no choice BUT to marvel in each step they take, each word they utter, each breath they take. Everything is a gift, and I couldn't think of a better one than my beautiful children and their fascinating hearts.

To read the stories of our many heart friends please click...

First Day of School!

2010-08-25T10:00:00.001-07:00

Miss Ava went back to school on Monday, the 23rd. She was sooo excited to see her friends and teachers. This will be Ava's last year of preschool, next year she will be entering Kindergarten. WOW, seriously where does the time go? For those who may not know, Ava attends a speech enrichment preschool. The focus is on speech, which is where missy is (temporarily) delayed. The class is only 2 times a week, 3 hours each time. There are three wonderful teachers in Ava's class, as well as a APE(adapted physical education) teacher and a speech therapist. Ava LOVES going to school, she gets so excited and comes home from class all excited and anxious to share what she did that day. It has helped her in so many ways. I am very satisfied we chose to enroll her early, my prayers are she will be mentally ready for a full day of Kindergarten next year, thanks to this class and having 2 years of preschool and three summer programs under her belt.

I saw a few photos of people who bought those mini chalkboards and would write down their child's entering grade and have the kiddo hold it for a photo on the first day of school each year. It was the cutest back to school photo idea I have ever seen! So I began my last minute search for a mini chalkboard, lucking out at Michael's finding the perfect size for only 3 bucks(thanks to Mom and Paulette for accompanying me)! I gave my son Greg, who is entering 5th grade(why couldn't I of found/thought of this idea sooner!) the option of posing with the board or with an apple, he chose the apple. Heh. Which still made for a great photo! But I LOVE the way Miss Ava's first day of school photo came out. LOVE.

Ok, enough patting myself on the back...On a different note, I still cannot believe I bought my daughter twinkle toes. I remember when I first saw an ad for these shoes I was just shaking my head saying, "NEVER buying my daughter those ugly, gaudy things!!" But Ava LOVES all things sparkly, and I am a sucker for that cute face that lights up and the big sigh and shriek when Ava finds something she loves(which is why Ava is also the proud owner of the ridiculousness that is Lelli Kelly shoes). And I do have to admit, I am starting to warm up to sparkly shoes, at least for her. You won't catch me in mama sized twinkle toes, promise I haven't gone that far over the deep end just yet. ;)

Sacramento American Heart Association START Heart Walk

2010-08-24T10:46:00.000-07:00

Hi friends!

This will be our third year participating in the local heart walk, and we are asking you to please please please consider walking with us, and donating. Usually I am not too pushy about the donation part, walking and showing Miss Ava support is more than enough! But this year ALL donations made to Ava's Team will go directly to funding for pediatric cardiovascular research. As many of you know, Ava was born with several complex congenital heart defects. She required open heart surgery at just 7days of age, or she would not survive. She required a second open heart surgery at one year of age, and will continue having surgeries through her life. Funding for research gives our babies a better chance at life.

So please do consider registering to walk with us, as well as donating. And once you're signed up, send out emails to your friends, family and colleagues. I couldn't think of a more fabulous cause, personally. :)

our team link to register: http://heartwalk.kintera.org/sacramentoca/teamava

my personal page for donations: http://heartwalk.kintera.org/sacramentoca/teamavajen

All info on the date of the walk, time, distance, etc can be found there. Thank you!!! <3

Ava's cousin Torie visits from Ohio!

2010-07-22T20:16:00.000-07:00

...and madness ensues! Not really, but Miss Ava and Greg sure have LOVED having their cousin around the last few days! :) The days leading up to Tories arrival all I heard from G was "When does Torie get here mom? How many days are we hanging out with Torie, mom? What kind of music does Torie like, mom? Do you think Torie will want to come over and go swimming with us, mom? Is she going on a plane all by herself mom? When do I get to do that, mom?(never)" Etc, etc etc. You get the idea. They were both just a tad excited.

So we took the cousins bowling at Crestview(which was totally dead, btw. Maybe people think it already closed?). I think Ava won the first game, and G won the second(I have to add that Miss Ava got a STRIKE in that second game, though! ). Torie shouldn't feel bad tho, my kids are notorious and ruthless cheaters!!! ;) So if there was a way, they found it.

Next up was the State Fair. We didn't get to take Ava last year because I don't think there was a single day that worked into our schedule that the temperature wasn't over 105. Insane. And miss heart diva doesn't tolerate that kind of heat well at all.

Anyways though, after we visited the dinosaur exhibit and ate nasty(delicious) fried junk and once the midway opened Torie and Greg took their lil wristbands and went on the big kiddo rides while hubby and I took Ava to the kid park area and to ride a pony. So cute. But I missed getting lots of photos of all the kids together. :(

We loved hanging out with Miss Torie though, hopefully we can get out to Ohio soon for a visit ourselves!

Ava left her (unmended) heart in San Francisco

2010-07-22T19:45:00.000-07:00

This is a super late post, I am trying to play catchup with the blog though so bear with me. ;)

A few weeks ago Greg's brother Jeff visited us from Washington, along with his beautiful girlfriend, Suzy. We had a fun few days of activities. Including a Rivercat's game as well as a day trip to SF. Which is the city little Miss Ava was calling home the first few weeks of her life. The place where she underwent that amazing first, and second, repair on her itty bitty tiny little heart which allowed her to be here with us today in all her ballet-obsessed, MO! screamin', "pince chamin" dreamin,clothing-aversion sassy glory! ;)

We started the day at the wharf, of course. The kiddos loved watching the sea lions and the boys had fun in the sports shop. Then we headed over to the California Academy of Sciences and Aquarium. LOVED it. Though we missed the planetarium showings(just another reason to visit again, though ;), the rain forest area was AMAZING. All the exhibits were great, actually. Totally recommend it to my CA locals. :)

After a few hours in the museum we all went over to the Golden Gate, parked on one side and walked the bridge. SUPER pretty views but holy moly it was windy and FREEZING. Need to dress better for that one next time for sure. A lightweight cardigan was so not cutting it. :/

Very fun day though and it definitely beats looking out at the Golden Gate(fog permitting) from Ava's favorite room in UCSF. Wind and all. :)

Document Everything

2010-07-15T21:19:00.000-07:00

Hi all, So these photos are on here a little late. They are from the photos we had taken by the amazingly talented Megan Squires at . She did such a fabulous job with Ava that this mama had a terrible time picking my favorites and narrowing it down.

Funny story. Megan is actually someone I knew from High School. I saw a little ad for her website on facebook one day, and fell in LOVE with her work. I actually had no idea who it was, until I read her about me bio and saw her photo. Then it clicked and I was like, "Oh I KNOW her!" And what I could remember of her, she was always super sweet and kind. So that along with the gorgeous and vibrant images I was staring at convinced me enough that I wanted her to capture Ava's next birthday and heart anniversary photos. SO glad I did! She was so unbelievably personable, patient and really had a knack for getting Ava to feel relaxed and comfortable. Most of the people who read this blog and know Ava well know that as of late(re:since all those hospitalizations for caths), she has a serious case of "stranger danger" going on. Which is not all that bad, except for the serious anxiety it brings with it. Eventually she warms up to everyone, though. No "eventually" was needed on this day, though. Ava loved "Mey-an" and actually still talks about her! It's very cute.

Anyhow. It was a very special day for us, the actual four year to the day anniversary of the day Miss Ava had her first life saving repair to her perfectly imperfect heart. She was only seven days old, not even 7 pounds, she was our tiny precious perfect little girl and to go from not knowing if you would ever be bringing your daughter home to watching her run around playing, dancing and full of smiles was something so special, something I will cherish forever. And I have AMAZING photographs to document it. Oh, and did I mention the stunning slide show complete with video and beautiful music she put together for us also?! Yeah. Thank you, Megan. Words cannot express the wonderful joy and precious memories you have captured for my family and I. :)

Camp Taylor, 2010.

2010-06-29T11:34:00.000-07:00

We were finally able to attend Camp Taylor! Lots of confusion, lost registration and then an opening at a camp that was around the time of Ava's Cath and a possible third OHS prevented us from attending last year, and I was super heartbroken about it. BUT, it all worked out this year and we even got to attend the same camp as Miss Ava's heart and digeorge bff Madison and my digeorge/heart parent ROCK, Michelle. As well as the rest of the Stone clan.

Other heart family friends have shared their stories and pictures of their experiences at Camp Taylor family camp, and was VERY excited but didn't know exactly what to expect since the "camp" we were attending was actually at the Hilton in Santa Clara. Usually it is outdoors in a more camp-like setting and they have activities such as kayaking, archery, relay races, obstacle courses and stuff. Of course, the two G's were hoping for some roller coaster action at Great America(the hotel was literally right next to the theme park), annnd they got their wish!

We arrived at the Hotel at about 3pm, check in time. Our mentor came and greeted us immediately and then we separated and got situated in our room. Took a look at the itinerary...WOAH. They keep you busy with activities from 8am(thank YOU Hilton for having Starbucks available in the lobby), to 9-10pm. The first day there we had our family photo taken, then went to do our first craft, making a family banner. I usually get sort of all perfectionist when it comes to this sort of thing, but decided to just let the kids do their thing and have a good time with it, for once. ;P And they did a most excellent job, too! They must get it from their mama.

Then we went to another room for MORE arts and crafts time. Ava had fun with this, using scissors and glue and all the messy craft elements. G, not so much, but he was an excellent sport and played along very well. Then it was dinner time. Each meal was catered and served buffet-style. During dinner time, each family introduced themselves and their families and shared the diagnosis of their heart camper. It is still so surreal to be surrounded in a room full of families who have gone through so much of what we have. When Ava was first diagnosed I absolutely felt SO alone and isolated, I truly never would of imagined there were so many others out there going through the same thing. After dinner each night they usually let families and/or campers go up on stage and share songs, talents, etc. Super cute.

The next day was GREAT AMERICA time! Greg and I were trying to remember when the last time we had been there was, and I think we concluded that it hasn't been since before children. So we were all excited to spend the day together at the park and meet later for lunch with the group. The boys went off on a few roller coasters while Ava and I checked out the rest of the park. Not too many rides for her, as she isn't tall enough yet, but we found a few. :) Plus, they now have a Snoopy Zone and Ava is ALL about "puppies!". The weather was luckily really nice, which was great for Ava, and for the rest of us who were wearing BLACK heavy cotton shirts(camp shirts). After lunch we all gathered for a group photo, then it was just the heart campers and siblings time. WOW. Another one of those moments, so proud and in awe of every single one of those kids. They were seriously the happiest, friendliest, most energetic bunch I have come across! So inspirational, and they don't even know it.

On the final day the kids got to make build a bears, and many families shared testimonials of their time at Camp Taylor and what it has meant for them. So moving(Tiff, fyi, the tear count was up to about 10 at this point ;P). At the very end each family was presented with amazing little gifts to remember their time at camp by, a scrapbook and mouse pad made by the mentors, an iron on transfer using the family photo taken upon arrival, and each heart child received a shadow heart buddy. It's a special doll that has the heart scar down it's chest. Ava fell in love instantly and the doll, along with the bear she made, haven't left her side yet!

Our family feels so thankful and privileged that we were able to attend such a unique and special event. I know this will come to be a tradition and will be such a positive influence on Miss Ava's life and journey. It was so neat to be in the room at mealtime or out at the pool or at the park with all of the families and see these children running around, playing, showing off their beautiful scars to each other and just being kids. It is such a blessing to have them here and healthy enough to attend these types of events, and the people behind Camp Taylor who make it all possible are amazing! Thank you for letting our family be a part of it. <3

amazing milestones

2010-06-10T12:05:00.000-07:00

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What a week it has been! To catch up everyone, Miss Ava successfully completed her first year of Preschool! I am so very proud of her, and so thankful to her fabulous teachers who helped her accomplish and conquer yet another little milestone. We lucked out with these three fantastic ladies! :) Luckily for us, they will also be teaching the extended year summer school program Miss Ava is enrolled in. So glad they are running the program this year, plus Miss Ava having the same friendly faces will definitely help her apprehension she will undoubtedly have after a couple of weeks off.

Another huge huge HUGE milestone Miss Ava reached quite some time ago but was just made official two days ago, the Mic-Key is OUT and her stoma closed all on it's own within 24 hours! Ava has been eating on her own since fall of 2009. Getting her to take her medicine orally was the biggest hurdle, but she does it so well now. She is 100% off that nasty pediasure, eats usually anything we give her, and takes a daily multivitamin and just half a baby aspirin for meds. WOW! From the little failure to thrive baby with paralyzed vocal cords who aspirated and couldn't handle her own secretions that was 100% reliant on similac pm 60/40 and later pediasure for nutrition, to a healthy 4 year old who can't go over 45 minutes without needing a snack, this mama is SO beaming with pride!

I of course took before and after photos of Miss Ava's belly, but I think I am going to keep those to myself for now out of respect for little missy. :)

Four and Fabulous

2010-05-24T10:39:00.000-07:00

Yesterday was Miss Ava's official birthday, as well as her party with lots of family and dear friends there ready to celebrate four amazing years with Ava. The day was seriously GORGEOUS, and aside from the nasty wind ruining all my pretty decorations, the party was perfect! Ava was her usual quiet and cautious self, which is always how she gets in large groups of people. She was also super tired as we stayed up quite late the night before attending a Rivercat's game with Brother's little league team(Rivercats lost, btw. But the kiddos loved the fireworks!). But all in all it was a wonderful day, not to mention Miss Ava made out like a bandit! She now has EIGHT pairs of sandals!! That's more shoes than there are days in the week! And if I sound like I have shoe envy, it's because I DO!!! ;) Miss Ava also scored a big girl two wheeler bike, a scooter, a complete Ariel beach ensemble, an entire summer wardrobe, just too much to list.

We missed those who couldn't make it, and appreciate all those who did! If you guys took pictures, please send them to me asap! :)

Happy Birthday my precious daughter. You have accomplished so much, overcome more than many others will have to face in a lifetime, and did it ALL with a smile on your face! Mommy, Daddy and Brother love you so much and are so thankful for that day you blessed us with your presence. You have accomplished so much just in the last year...You are about to finish your first year of preschool, amazing! You are talking so much more, and working very hard in class and in speech therapy! Growing stronger every day! You started using the big girl potty and barely had an accident since! You were very brave this year for the two catheterizations you had. You started eating 100% orally and now ask for a meal/snack every 20minutes! You have made lots of new friends, had your first soccer class, first trip to the ocean, first trip to DISNEYLAND! Four years, wow!

Happy Birthday Ava! Preschool-style

2010-05-19T19:37:00.000-07:00

I am SO super blessed and lucky that I am able to do things such as spend the day in my daughter's class and be a very small part of her mini celebration with her classmates and teachers. Which is exactly what I did today!!! Ava knew she was going to be celebrating her birthday today in class and although she seemed a tad bit apprehensive(not all that unusual for Ava) she was also really really excited! Most of that excitement undoubtedly had to do with the sugary super cute cupcakes that were involved. :) She woke up this morning ready to go! She picked out her outfit(luckily she changed her mind from the VERY full pettiskirt to a more sensible, but equally cute, outfit ;), brushed her teeth, combed her hair and was ready to GO!

I had lots of fun sitting in on class today. Just to see Ava in school and interacting is a milestone I hold near and dear to my heart. She has come so far, and I don't see signs of her slowing down anytime quick! ;) Thanks to the fabulous teacher team Miss Ava has on her side, I have heard so many horror stories of IEP's and everything/one that goes with them. But you have all been so wonderful and I have seen the tremendous progress little miss has made this year, both socially, physically and speech-wise. Thank you! :)

I miss me.

2010-05-17T20:05:00.000-07:00

It's been almost four years since our lives forever changed. And I can't help but to reflect on how different things were four years ago today.

I feel like I was an entirely different person. I was optimistic, I was carefree(hindsight), I was naive, I was hopeful, I was joyous, I was elated, I was YOUNG. I knew almost next to nada about how sick babies could be(hindsight again). I especialy knew nothing about CHD. Not to be a total wet towel, but most days when I wake up not many of those descriptions match my mood or thoughts.

I do not think I am depressed, at all. And that Jen you see or hear that is ALWAYS putting a spin on the negative and trying her darndest to turn it into a beautiful picture isn't faking it. It just takes more work nowadays. Sometimes a LOT more work. And I think I am just exhausting myself more than anything. But I don't know how to slow down and just truly relax like I used to. How can you when you are constantly trying to remember appointments, medicines, helping others understand what your daughter is saying, explaining this and that, am I spending enough quality time with each child, am I making sure my marriage is happy, is Ava eating enough/gaining enough weight, etc etc ETC.

Hmm, a work in progress, for sure!

My Mommy's Day 2010

2010-05-15T20:40:00.000-07:00

I guess first of all, HI. Total slacker with the blog again. I have been living in the cave that most of us crawl into right before one of our child's birthdays, knee deep in party planning. Luckily the colors are bright and everything is pretty. :)

I hope all my mommy friends had a fabulous Mother's Day with their lovies! I sure did! Hubby works the late shift, from 8pm-6am, so he surprised me with my favorite latte on his way home, as well as donuts for the kiddos so that I wouldn't have to cook...MMM. Oh wait, am I supposed to admit I happily allowed my children to eat donuts for breakfast? Oooh, and that I even had one myself?! And that it was really, really delicious?!

Moving on, so the kiddos and I hung out all morning, they both showed me what they made for me in class, both made me cry cause I'm absolutely, 100%, one of "those" mom's. G offered to make me toast(hey that's huge, I am pretty sure when I met GBo at his tender age of 21 he was burning water still), kept sneaking up and giving me hugs and asking if I was having a day as good as I deserved. SO SWEET. We played, etc, and then started packing up for our mini trip to the coast! Once hubby woke we were off! It took awhile to get there, guess a lot of people like to travel on Mother's Day, who knew, but it was SO worth it once we reached our destination! We went to a little beach I heard about from my brother Daren called McClures. BEAUTIFUL! The weather in town was a bit rainy and overcast, but on the beach it was nothing but blue skies and mid 60's temps. Perfecto! It was Ava's first time visiting the coast, and she was SOOO super excited the whole time. She's been to the lake before, things like that. So when we told her where we were going she was on the lookout for "wa-er(water)" the WHOLE ride down. Once she spotted it she literally shrieked so loud it hurt my head and got SUPER excited. There was a long trail down and from the place where we had to park you couldn't necessarily see the ocean all that well, at least the beachy part. So we started our trek down the path and once that beach came into view Ava again shrieked and started dancing, she even threw in a pirouette. ;)

The kids spent the day exploring, climbing, digging, running from the tide, and I loved every second of it! We finally made it home around 11pm and had some VERY sleepy, but very happy kiddos on our hands. Of course, the next morning was Monday and we all had to rise and shine to get ready for school, but the long day before was totally worth it!

Thank you husband for making my Mommy's Day fantastic and very memorable. Thank you Gregory and Ava for letting me be your Mommy, if everyone could be blessed with two kiddos like you two, I think the world would be a much happier & and fun place to live. :)

Nothing in particular...

2010-04-07T23:01:00.000-07:00

So today we spent about 3 hours(including travel time) at a Genetics appointment for Miss Ava. She honestly hasn't been since an infant, for multiple reasons, mainly because insurance failed to see a reason for it. Ha. Ha. So anyhow, the appointment went very well. It was held at the M.I.N.D. institute, and the two ladies we saw today were fantastic! So kind and informative and really interacted with Ava quite well. Ava even liked one of them. ;) They said there wasn't much more they could offer Ava, we don't have any behavioral issues as of yet, although there are definitely moments, days, where I seriously question that ;), we already have speech and preschool going, as well as some OT through preschool. They do have a support group for 22q, and they gave me all sorts of information on other services, studies, etc that they do. They are also going to pass our info along to Dr. Tony Simon, and try to get Ava into his next study, so we are super excited for that. More on that as it comes along...

Today Ava also had class spring photos, and she picked out her new favorite dress(yes it changes daily) to wear with her sparkly sandals her Grammy picked up for her. Ava was running around the house practicing her pose ALL morning, it was the cutest thing ever. Then as soon as we picked her up from class she saw us and instantly busted out her photo pose, hilarious! We got home and took a little stroll around the block before lunch since the weather lately is amazing! I am still trying to learn this lens on my camera so I took it along. Well, anytime Ava saw me go for the camera she would stop what she was doing and start posing, how do you NOT laugh, and capture that!?

And in other, all thought and time-consuming news, I am in full swing of the planning of Miss Ava's party. If you have any crafty or baking skills, CALL ME PRONTO! I am so not above a family or friend discount/handout. ;) For family and friends, I will have invites in the mail the beginning of May. But her party falls on her birthday this year, so NO excuses!

xox

Hoppy Easter!

2010-04-06T13:43:00.000-07:00

Wow! Easter turned out to be quite an eventful day, and almost nothing happened as planned. For starters, it was windy, cold and wet outside all day. Boo! Usually we are mildly complaining of the heat, so it's typical that as soon as we don't have said heat we are complaining of the cold! ;P

We had plans to spend Easter with my family and Greg's family, and our friend's the Weaver's were going to come over for an egg hunt and dinner with their two kiddos. Easter morning we ate breakfast together, the kids found their baskets and tore into those, the Grandparents show up and almost instantly Greg starts complaining of a headache and he is shivering, despite being dressed in layers, a robe and a blanket off the couch. Poor guy! I take his temp and it is normal. He ends up falling asleep on the couch and about 20minutes later wakes up with a beat red face. I check his temp again and it is up to 101.6. Poor kiddo had just gotten over a random ear infection over a week ago, so once he starts saying he is dizzy we think it possibly came back. Since we have friends with small kiddos coming over we decide to get him checked out asap at the med center so we know what is going on. There they rule out an ear infection, and strep. The doctor made an "educated guess" that he has a throat infection, prescribes more antibiotics and sends him on his way. The poor kid slept the rest of the day and didn't even want to eat any yummy Easter goodies! :(

Our friends decided to stay home and not risk catching anything, don't blame them one bit. The rain really started up and we didn't get to do an egg hunt outside! :( Ava had a good time though with her family and we are planning on doing a delayed hunt later this week for the kiddos, which will be super fun now that the rain has subsided and the ground is dry!

Here are a few photos, I even got one of G before he started feeling terrible...

The Silver Lining.

2010-03-30T14:53:00.000-07:00

Since the day Ava was born, there hasn't been a dull moment. From the moment we found out our daughter had multiple CHD's and would need a series of three corrective, life threatening surgeries just to have a chance to live, I have been in a perpetual state of worry/alert. Now to those of you living with a "normal, healthy" child, this may alarm you. But for those of us with children born with a few extra needs, well you know exactly what I am talking about. Let's not sugarcoat how life is as a parent to a child born critically ill, it's years upon years of constant worry, fear, learning, memorizing, scheduling, organizing, did I mention fear and worry? You bet!

But then, there are what I like to call those "silver lining moments" and they come from everyday joys I once took for granted...

...Moments such as simply watching your little girl run and play and (almost) keep up with an oh so slightly older kid. Better yet, check out that mega watt, ear to ear SMILE on her little face. Moments like this make me truly realize how very lucky WE are to have been blessed with Ava. Enjoy it baby girl, you have more than earned it!

RSV/Pneumonia

2010-03-15T20:52:00.000-07:00

Sigh. I guess Ava felt left out? She mistook a hospital stay due to illness as a "milestone" she needed to meet? But really baby girl, did you have to catch both(supposedly) at the same time? Did you really have to have respiratory distress mommy hasn't seen since your first few months? Months that were filled with words like CPAP, CPT, breathing treatment, lung disease, etc. You know Ava, she goes big.

SO, Tuesday afternoon we went to the park with some close friends. Ava was super excited ALL morning to see her friends, especially "Loogie" which is Ava's way of saying Logan. Bouncing off the walls, driving mama bonkers until it was time to go. We get there, she's playing but rather suddenly gets super clingy and kind of just looks done, drained. Probably an hour later we are at home and Ava falls asleep so fast. Now if you know Ava you KNOW this girl NEVER slows down to nap unless she's sick. She wakes up probably 2 hours later and has a temperature and a cough/pretty bad runny nose. We treat the temp as needed and keep an eye on diva.

Next morning, more temp, more cough, more snot. Crap. :( Ava takes another nap that day and her appetite is definitely decreased. I continued to keep a close eye on her, but really it just seems like a bad cold so I am not too terribly concerned. During that night and into the next morning, Ava starts breathing rapidly. We didn't get much sleep that night, making sure she was okay. The next morning when she wakes the temp is finally down, she is happy and more like her normal self so we are thinking YAY! Then she falls asleep and is asleep for a LONG time. The breathing starts getting worse, and I notice she starts retracting. So that evening we take little miss into the local children's hospital ER.

We got a bed in the ER rather quickly, which was impressive. There we go through the usual questions, and the OH MY's explaining Ava's cardiac history. Overall I am extremely impressed with the ER and the staff there. They got her in right away, asked all the right questions without too much repetition, and started tests immediately. The only thing that really angered me, was the IV situation. It just should NOT take 6 blown veins and 8 pokes to get an IV. I realize she has lots of scar tissue(please don't comment on how you can tell she's been poked quite often nurses, it only brings back terrible memories and feelings), she was dehydrated and "heart kids are always hard pokes anyways." It's no excuse to treat a child like a pincushion. If you aren't confident you can get it, PLEASE call someone more apt to do it. Don't sit there and poke and prod on a small child who is very alert and already terrified, it's extremely traumatizing for them and anger-inducing for their parents. After way too many tries, I told them they needed to be 100% confident or back off before poking again. They called in the transport team who got it in 2 pokes. Usually they get it on the first try. Word to the wise and something for mom to remember next time, have them call transport FIRST. Not only did they get the stick quick, but they were HONEST with Ava. They TOLD her it was going to hurt, but that it would be brief and let her know WHEN they did it. No surprises, which actually helped. And afterwards, they gave Ava stickers. When you're 4(basically), and obsessed with princesses, an Aurora sticker makes EVERYTHING better. Loved them.

We got a bed up on the good ol' 7th floor, in the good ol' East PICU. Yuppers. The exact place Ava spent just over 2 months of her life before coming home for the first time. And yup, she still always has over a handful of nurses that remember her and are amazed at the little girl that failure to thrive, barely 8lb, 3 month old baby girl turned into. :) In fact, our first night there Ava had the same night nurse she had VERY often on her first stay, the first nurse to receive a smile from Miss Ava, Michelle. So nice to see her and know what great hands Ava was in.

That first night we were also told first that Ava's lungs were clear, no changes from her last xray. GREAT! But then a different doctor comes in and says it looks like a small bit of pneumonia and we start antibiotics asap. The next day the best cardiologist pokes his head in just to say hi and reassure us that this has NOTHING to do with Ava's heart. And also playfully lectures Miss Ava on her need for attention landing her in the hospital. ;)

Later doctors come by and tell us that Ava is all clear, her white blood cell count is normal, which means no infections! And again someone is saying that they don't think that little tiny "questionable area" is pneumonia and that we should be good to go home the following day.

There was some drama, but I honestly just don't want to go down that road again. This hospital just again proved why I will always be a nervous wreck and on my toes watching and double checking every one's every move when it comes to my daughter and that place. Never fear going over heads and questioning. Not only is it your right, but it's pretty much your JOB, especially for those of us with "special needs" children, though I really dislike that label.

Anyways. Ava came home Saturday morning and has been doing well. The first day home she was showing signs of trauma. Which is the most heartbreaking thing to encounter. She freaked out at bath time and with touch. I had to slow down and explain what I was going to do before I did it or she just started screaming and backing away. :( The first night home was filled with lots of terror and screaming for me. But luckily she didn't take too long before she was comfortable and trusting again. Atta girl. :)

Thank you to everyone who was there for us, even if it was just through sending me encouraging messages, emails, etc. Especially to my dear hubby, who seriously still amazes me with how committed he is to his children and family. Those who helped watch Gregory, helped me get to the hospital, those who offered to keep us company, feed us, etc. YOU guys help me more than I can ever express, and I am truly thankful to have so many people who care so deeply for my girlie.

Lots of love, and promise next post will be a happier, cuter one! ;)

Oh, Ava.

2010-03-08T17:18:00.000-08:00

I just realized I haven't given an update on Ava's health/development in a LONG while. Sorry. But no news is really good news around here. I rarely think to blog unless I need to vent or am freaking out. :)

I will start with the big eating news. Ava has been eating, by mouth, full meals and snacks, since before October of last year. AWESOME! Such a big accomplishment for my little miss! All the issues we used to have, with the occasional reflux(which at one time was so severe Miss Ava was categorized as failure to thrive!), mucus-y retching, gagging, etc have all vanished! Everyone told me to have patience, one day in her own time she would develop those muscles and become more coordinated and it would all fall into place, just didn't expect it to happen so effort and flawlessly. So we haven't used Ava's g-tube in months. She takes her aspirin by mouth every morning with her vitamin and all the other medications have been dc'd. :)

Ava started private speech therapy last Friday, and is still going to her preschool class two times a week. Speech went great. Her therapist was very optimistic and excited to be working with her, again. :) She said how she can hear all the words forming from Ava, and that she will work on further concentrating on Ava's muscle tone in her lips and tongue, there are certain stretches you can do with the face to help "wake up" the muscles and get them working even while at rest, as well as prompt them to move the way they need to in order to make certain sounds. As far as cognitively though, she was thrilled with what she saw and said it's "all there, and once Ava gets going there is going to be no stopping her!" Ahh, music to this heart mamas ears. Right now Ava's school and speech's schedules aren't meshing very well, at ALL. But we have her in for once a week as of right now, hoping for more along the way and definitely over the summer when Ava will be out of class.

We are still working on referrals for GI(it's been a LONG time since she needed one) and a speech pathologist the ENT recommended to address her possible palate issues I covered in a previous blog.

In not really Ava, but still sort of Ava news, little league season is up and going! Love this time of year and all the chaos it brings! Which means warmer weather is right around the corner as well. Now, as many of you know, we had CPS called on us last summer for "bruises" on Ava(the case was investigated, complete with visits to my son's school, talking to the grandparents, Ava's doctors and a visit to our house/examination of Ava and was dropped within a week). We are still not sure who, and it doesn't really matter. The point is that Ava is on a daily aspirin regimen, which causes her to bruise rather easily. You will NEVER see Ava without bruises up and down her shins, especially. And it is my job as her mommy to make sure everyone that comes in and out of her life in any way knows this. I thought I had my bases covered last year, but there is one group of people I never thought to alert. Greg's baseball team/parents. So I am debating still on how to broach this. I am thinking the best way is to just shoot a quick and short email addressing her aspirin therapy and the side effects and to please approach us with any concerns? And of course, link to Ava's blog so they can, if they so choose, get a bit of background info on our lil miss. It's practically a whole new team this year, so I definitely need to do something. Ugh, I just don't think I will ever get used to this part. Things I don't even think twice about, because they are second nature. But things that other people would be quite concerned over. And having to explain it all. Oh well, if that's our biggest concern I'd say we have it pretty good right now! :)

Sorry for the sporadic postings. I am trying to get back into the habit of posting weekly, if not more often! Have a great week everyone!

March for Babies

2010-02-28T19:36:00.001-08:00

Hi family and Friends!

I have finally done what I have talked about doing(and then almost always completely forgotten about until it's too late) for about 3 years now, that is I registered and made a team for the March of Dimes March for Babies walk!

A little bit of info taken from the March for Babies page:

Every day, thousands of babies are born too soon, too small and often very sick. Our team is walking in March for Babies because we want to do something about this. I know you care, too. That's why I'm asking you to join us.

If you can't walk with us, please help by donating to our team. You can do so right on this page. Thank you for helping us give all babies a healthy start!

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives. And they will be used to bring comfort and information to families with a baby in newborn intensive care.

Follow this link to go to our team page where you can register/donate: http://www.marchforbabies.org/team/t1380190

Let's go out there and represent our precious heart hero, Ava! As well as honor all those beautiful babies and their families who each day are born prematurely, sick, or worse. We are lucky to have such a large family and so many incredible friends. I do not ask for much from any of you, but I do ask that you try your best to make it out to this walk, as well as the one for the AHA in September. It means the world to me, and someday very soon will mean just as much to Ava. :)

Thanks! Hope to see you then!!

ENT

2010-02-26T12:44:00.000-08:00

SO, I am not sure how much of Ava's palate "issues" I have actually gone over and covered for everyone, and especially on this blog. So I suppose I should start at the beginning.

We first saw milk come out of Ava's nose the very first time she ate, only hours old. It happened while eating, as well as afterwards, if she spit up half of it would expel via nose. We mentioned it to the nurses who passed it along to dr's. They would take a quick peek down her throat and in her nose, note that there was no cleft or severe palate issues, and leave it at that. "I cannot see or feel any abnormalities" couldn't even begin to tell you how many times we have heard this. Right. So every baby spits up through their nostrils? Didn't think so. We didn't push it nearly as much as we should have, though. We took their word and did the "wait for her to grow and watch to see if it's something she "grows out of" game. Though we did continue to bring it up, only to be met with the answer of, "well I see it noted that no cleft or abnormal palate was noted on observation".

Fast forward to a few weeks ago, at Ava's private speech evaluation with a wonderful therapist Ava saw before she went into the Alta program. This was no typical, 15minute, let's hurry up and get this over with(how it often seems) evaluation. This Speech Therapist really took to actually evaluating Ava and noticed a few things that sent up immediate red flags. She asked me a few questions and continued playing with Ava. Then she asked if it was okay to look into Ava's mouth to check out her palate. Ava was very willing(she trusts her therapist) and after a somewhat lengthy look around, she said while she is absolutely not a doctor or specialist in this field, she is noticing some abnormalities going on in there. We discussed what they could be, what it would mean, what her part in everything would be, how I should approach this, etc. She was so very helpful. Someone was finally listening to our concerns and validating them. She offered to send in her findings once we got the referral for ENT.

Fast forward to today, the day of Ava's appt with ENT. We also decided since the school was unsuccessful in getting Ava to participate in a hearing test(go figure, typical Ava) that we would go ahead and try a hearing test there. So we got that all set up, and went over a few questions and concerns, mostly about her ears. We mentioned the palate so he does the usual look and feel, says everything feels and looks fine and continues on about the ears.

Frustration. I am so absolutely frustrated at this point. I mean I specifically tell this specialist that my almost four year old cannot blow a bubble or make certain sounds, that it is PHYSICALLY impossible for her, and that liquids STILL come out of her nose when she drinks. And he just more or less brushes it off again. I tried to calmly state that this needs to be further evaluated because there is obviously SOMETHING going on. And that her speech therapist didn't just look, she had Ava talk and make certain sounds while looking to see how the palate was moving, and that she absolutely saw something ABNORMAL going on. What she thought it was wasn't necessarily important, but she even allowed me to look in both her mouth while making an "aaaahhhh" sound and then in Ava's mouth while Ava made the same sound and I could clearly see discrepancies. So I wasn't leaving that office again without a better answer/solution. Only then does he mention that we will have to get another referral to an actual speech pathologist or craniofacial specialist. And that they would basically further investigate what could be going on.

I understand that we are her parents, we are her advocates, etc. But what happened to doctors who go above and beyond. Or those who just actually do their jobs and continue investigating until the "problem" is solved, or in the very least addressed?! I honestly just do not understand.

So now we sit and wait to hear back about the new referral. Which isn't going to be the easiest to get because there are no specialists in our "group" they are all at Sutter and UCD. Which means we will undoubtedly be referred to a UCD doc.

Oh, and Ava sort of passed her hearing test. She has small ear canals and it makes testing and results difficult, we were basically told. Sigh. Plus, Ava seriously really really REALLY doesn't like doctor offices. Nor does she trust one single word out of our mouths while IN any doctor's office. Making it impossible to console and convince her that they are only going to look in her mouth and ears, no owies, etc. I know I was just on one, but I could REALLY use a vacation. ;)

We went to DISNEYLAND!!

2010-02-25T19:45:00.000-08:00

Ah yes. The trip I have been mentally planning since our last trip with Gregory when he was about 5, finally happened. We booked our 5 night, 6 day, 5day hopper pass trip to Disneyland via Costco Travel. We stayed at the Hyatt OC, which is where we had previously stayed and fell in love with. And NO it wasn't JUST because they have a Starbucks in their lobby, though that was definitely a perk. :) I have to say, I thoroughly enjoyed my booking experience with Costco Travel. They offer fantastic rates, and include lots of great and fun extras. Such as a Character Dining Experience for each staying guest(we chose the princess experience at Ariel's Grotto for Ava since Greg REALLY didn't have a preference and said as long as food is involved he is down, what a good big brother! ;), travel tags, lanyards, pins, a $20 Disneyland gift card(yeah it pretty much bought the equivalent of a pack of gum and a drink) extra hours in the park, preferred seating for shows, etc.

So we were set to leave for Anaheim on Monday, February 15th. On Sunday, the 14th, Husband surprised us by announcing we would be leaving a day early, HOORAY! So we quickly got the kids situated and packed up and we were on our way!

The hotel actually upgraded our room from what we had reserved, a kid's suite(has the main part of the room, plus a smaller room behind glass doors that has a bunk bed, tv, etc for the kiddos) to the family suite. Which had the kid's room with an attached bathroom and vanity, the "living room" common area, and our bedroom with another full bathroom. It was newly renovated and plenty roomy for us four. And because I always get comments about how I never take photos of the hotel room(who thinks to do that?!), I actually have a couple to share, sorry...

our room

kid's room

family room

We arrived pretty late that evening, and decided to just take it easy so we could wake up early and ready to go the next day. The kids did really really well on the car ride. Ava luckily slept most of the second half, if not more, and Greg had his lifesaving Nintendo DS to keep him occupied.

Our first night in the room...

Day one we winged it and spent most of the time familiarizing ourselves with the parks again. The great thing about staying at the Hyatt is they offer a free shuttle that leaves every 30 minutes to and from the park. So we used that to our advantage most days and would go home for lunch/Ava rest time. She never really napped, she never really does, but the rest was MUCH needed, seeing as how we didn't return back to our room until after 10pm most days. Gregory quickly remembered which rides were his favorite, which new ones he wanted to try, etc. Ava did what we thought she would do, and wouldn't go 20feet anywhere near Mickey or his friends. Sigh. She has a serious problem with people in giant furry costumes. Not a fan one bit. Poor mamas. Actually, they don't even have to be furry. She equally loathed and feared the totally fur-less jelly belly thing that was dancing around the Jelly Belly Factory last summer. Sigh...

Day two was filled with rides, rides, food, playhouse Disney live shows, souvenirs bugs life shows, rides, food, parades, and more rides. FUN! We definitely brought back two VERY tired, very HAPPY kiddos to the hotel room that night.

On Wednesday Miss Ava had a date with a few princesses. She was SOOO excited. To see the glee and sheer happiness in a child's face like that, it's magical. Seriously. I used to wonder what kind of nutjobs paid that kind of money for their kids to "eat with their favorite Disney Characters" I am now one of those previously said nutjobs. AND PROUD. ;) It would of been worth it at double the price. And the food was actually pretty darn tasty, to boot. We also spent the day going on every princess ride imaginable, touring Aurora's castle, shopping up a storm in the Bibbity Bobbity Boutique(that place is pure evil), and going on It's a Small World only about a million times. :)

So the next day we made it more about G, as much as we could. While him and bigger G went on Space Mountain, and all those other rides, I took Ava to meet Tinkerbell and Silvermist. We waited in a line that took over an hour and a half to get through. To meet two characters. Yup. I think that was definitely the final nail in the nutjob coffin. Oh well. Ava was again, beside herself happy to be meeting TINK and the "blue fairy" they signed her autograph book, talked to Ava about her favorite color(she was head to toe pink but insisted her favorite color was "purplicious") and Tinkerbell even insisted on dancing with Miss Ava once she saw Ava's cute princess ballerina tutu(purchased from that previously mentioned evil store that is chocked full of the cutest princess stuff EVER). It was the cutest thing ever to witness, and the big smiles during and after made standing in line, in the hot sun, totally worth it! Later that night, after the parade, we wandered over to Downtown Disney with the sole purpose of taking G out to dinner at the ESPN Zone. Well...turns out that's another place you really should make reservations for. 75minute wait for dinner and it's already 8pm?? No, thanks. Gregory was pretty happy just browsing the store, picking out an ESPN shirt and game, and calling it a night, though. So we went back to the hotel and ordered in.

Friday we got to the park early, and headed straight to Toontown. Ava saw Mickey and Minnie's houses and was STOKED to meet them...thank GOODNESS. So we stood in really short almost nonexistant lines and took pictures with each character, let G chose if he wanted to partake and walked through toontown a little bit more. Then took each kiddo on a couple of rides until it was time for lunch! Which we had at the super yummy restaurant that is inside the pirates ride, Blue Bayou. Oh, it was SOO good. After that, we just let the kiddos do whatever rides they wanted to do, as many times as they wanted to do them.

The trip was fantastic. The kids both had a wonderful time. And we were EXHAUSTED. But in a good way. I am just super thankful that we are able to take a trip now with Ava and not have to worry about as much as we used to. In fact, this was our first real trip besides to San Francisco, that we have all gone on together since Ava's birth.

Greg was worried in the days before the trip that there wouldn't be much for him to do at Disneyland, but he quickly found out that there was still PLENTY that held his interest!Plus, he was a tremendous help with his little sissy. He never once complained if he had to accompany Ava on to a couple of her rides because she would request for brother to go with her, or when we went to the princess lunch. Ava overcame her fear of people in big costumes(hooray!) and had the time of her life, one she still talks about and reinacts with her dolls and any willing and able body. :) We owe our amazing time to the guy who works his booty off to provide for his family and never, ever complains about it. I married one incredible guy, and the best father around! Thanks hubby, we love you so much!!

CHD Awareness Week

2010-02-07T09:11:00.001-08:00

Hi all!

I have been majorly slacking again with the blog. Shameful. ;P But what better way to jump back in than to dedicate a posting to my inspiration of the week(all the time, really. But especially this week), Miss Ava.

Let's first start with some CHD facts.

* Congenital Heart Defects are the #1 birth defect.

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

Ava was born without any complications, and certainly with no prior indication of what was going on with her little heart.

Ava was my dream come true. My healthy, beautiful, perfect little girl. She was cute, and as pink as could be. Who would of thought...

There was no indication of what was going on in little Miss Ava's body. The doctor detected a murmur, Ava wasn't eating very well(milk was coming out of her nose and she would tire before taking much in), but were reassured that everything was fine. Ava spent the night with me in the hospital, anticipating an am discharge. That morning, the nurses took Ava to, as they told me, "run just a couple of simple little tests to make sure that murmur is harmless." Hours went by, something wasn't right. We ask nurses, they don't seem to know much though. Finally, Ava's pediatrician comes by and says that we are officially discharged. I specifically asked, "So the murmur was harmless, then?" He gives us a big smile and says absolutely. Free to go home. We are SO happy, SO relieved. We ask where our daughter is and he lets us know she is on her way back to the room. He leaves the room. My husband has to go pick our son up from school. Not 3 minutes after he leaves, an older gentleman in a white coat with a very stoic look on his face and an apparent aversion to eye contact enters my room. Now, I am not psychic or anything, I don't even believe in such a thing. But I just knew. I can still feel that fear and utter sadness deep in my heart the moment I first met Dr. Van Gundy, as if it were just earlier today. He asks to come in, to speak with both my husband and I. I let him know my husband won't be back for at least 20minutes. He asks if he may go ahead and speak. I think I kind of just nodded my head and grunted.

I am a Pediatric Cardiologist. Your daughter has something very wrong with her heart. Something we refer to as Hypoplastic Left Heart Syndrome. A very serious form of Congenital Heart Disease. You have two options. Permit her to be transferred to UCSF or LPCH, or take her home and give her comfort care until she passes. Her CHD is not compatible with life. Without surgery, she will die. With surgery, there are many fatal risks involved. Her quality of life is unknown and nothing is guaranteed. I have had parents go through the surgery and later regret it, and vice verse. You have two options. I am sorry. I am going to leave now and return in a bit. Please discuss this with your husband and make your decision.

And there I was. Alone. Broken. Confused. And the most scared I have ever been, and hopefully will ever be. I tried to hold it together long enough to call my mom and try to get a hold of Greg. I somewhat succeeded. I can't even remember what I said when I got my mom on the phone, but I know it was enough to alarm her and for my husband to decide to leave Greg at the grandparents before coming back to the hospital. Once he got there, the nurse came in and gave her apologies, said she was going to shut our door and to take as long as we needed.

My sincere apologies to any other new mommies that day at Mercy San Juan who may have heard me screaming and crying.

We let it all out, and immediately wanted to see our precious little girl. Nobody warned me for what I was about to see. Not that it really would of made much of a positive impact on my mental stability at that moment.

Imagine giving birth to an absolutely perfect, beautiful, precious, special little baby. They score so well on their little newborn APGAR tests, you struggle nursing them, but love that bonding time, they spend their first night of their life right beside you. You are SO exhausted, but can't help spending half the night just staring at your little miracle. You wake the next morning and continue staring in awe, just totally smitten. You take in her newborn smell, her baby bitty toes, fingers, who does she look like, look at that perfect skin! The next time you see your baby, she is hooked up to so many machines, her umbilical cord has been cut for more access, and half her tiny face is covered in tape. Tape that is holding in her breathing tube. She is in a new room of the hospital. One you've never seen before. This room is full of tiny little babies, all hooked up to breathing machines, tubes, lines, on medications that are keeping them alive. Heartbreaking and soul crushing doesn't even scratch the surface.

As a mommy who hadn't even heard of CHD before, who only knew of defects caused by poor decisions made on the parent's part, I couldn't stop thinking, "I did this. What did I miss, what did I do wrong that put my precious child in this position?" I hated myself. I can honestly say it took months, if not longer, to get over that, for the most part. I went over my every activity with a fine tooth comb. Ava's birth was planned. I started preparing for her weeks before we actually conceived. I read every book and article I could get my hands on about how to have a healthy, and safe pregnancy. Those who were around me while I was pregnant with my diva, can vouch. I was almost neurotic about making this a healthy pregnancy. But it simply wasn't enough. What I, in my naive state, grew up believing was simply; you take care of yourself while pregnant, you make every possible effort to make that baby priority number one ideally even BEFORE you are pregnant, and you will be rewarded with a happy, healthy child. A few exceptions, for someone of my age and with my somewhat clean family medical background, highly unlikely. Never even heard of CHD. Why? Why is it that the number one present at birth defect, the number one cause for death in the first year of a child's life, taking twice as many children's lives yearly than all forms of childhood cancer combined, has little to NO coverage. And funding to match.

CHD Facts:

* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

* 4-8% born with CHD have Hypoplastic Left Heart Syndrome

* 4-10% born with CHD have Atrioventricular Septal Defects

* 8-11% born with CHD have Coarctation of the Aorta

* 9-14% born with CHD have Tetralogy of Fallot

* 10-11% born with CHD have Transposition of the Great Arteries

* 14-16% born with CHD have Ventricular Septal Defects

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.

These are our children, and they are dying. My daughter is a "happy ending" story. But Ava's story is far from over and we are promised nothing beyond the now. I have seen far too many of Ava's heart friends struggle just to live, or pass away. They all deserve better. And don't we owe it to them to help achieve that?

February 7-14 is chd awareness week. Please take just one hour this week, you pick the day, and educate yourself. Find out the symptoms and warning signs of CHD. Urge an expecting friend to ask for a pulse ox reading on their newborn, share the story of a chd warrior you know. If you are reading this blog, you know of at least one. :) Know that just because you see our babies running around and keeping up with the other children, or you can barely notice that fading scar down their chest, does NOT mean they are "cured" or that CHD's "can't be that bad." The statistics say it all.

This week, I am going to celebrate my warrior, and all heart heroes. I am also going to remember and honor those that earned their wings far too soon, and the families they left here on earth. I love respect and admire each and every one of you!

LPS

2010-01-17T20:23:00.000-08:00

So Miss Ava had her lung perfusion scan last Friday at the hospital. We were set up with a 2:30 appt, 1:30 check in time. Ava was all sorts of smiles and happiness on our way there, even once there she was cool. Alert and guarded, but not nervous like in previous visits last year when she started crying the moment we entered the hospital. Thank goodness. She was also VERY hungry, though, and slept most of the wait.

There was only one moment where mommy lost her cool and got upset with people not doing their jobs. What do I mean? Anesthesiology comes in at about 3:30(keep in mind they were supposed to START at 2:30 and diva girl hadn't had anything to eat since dinner time the night prior), to let us know that the correct medicine for the scan had not been ordered, and someone is on their way no to deliver the proper meds from their midtown location. Okay, midtown isn't far from where we were at, at all, but I think anyone who has experience with this hospital knows better than to actually believe when they give you a time("by 4pm")for when the medicine will be on campus. Case in point, our scan was supposed to start at 2:30! It was an hour later and they were just NOW realizing they didn't have the right medicine?!!! Absolutely ridiculous. They are lucky she was asleep and "comfortable" because had she been awake and miserably hungry, we would of left.

Anyhow, the medicine ACTUALLY arrived on time, in fact it was a little early(I'd like to think my playing mama bear helped expedite things along a bit). So as soon as it was physically at the hospital they brought us back to the recovery area to a bed and got ava some anti-anxiety meds. Not only to help with the sleepy mask time, but for afterwards when she would be waking up to a bunch of mean doctors in her face. I know from past experience, this does not work much on my girlie, but, as long as it helps her fear even slightly, it's good. So then it is time to walk her to the scan room and hold her as they get the sleepy meds mask ready. As soon as Ava saw that mask she covered her mouth and nose with her hands and burrowed her little face into my shoulder. So much for the meds helping the children not remember that day's events. :/

Once she was asleep and secure, we were escorted yet another waiting area. I kept busy texting updates to friends and family and posting updates on facebook. :P Husband kept busy playing video games. :)

After about an hour and a half wait, someone came and let us know Ava was out and doing well, and that they were taking her up to the 2nd floor surgery recovery. WOAH. A place in that building I haven't ever been. I have been to the peds surgery recovery on the first floor, MANY many times. As well as the cath lab recovery, etc. It was pretty darn chaotic up there for so late in the evening! And Ava was out to the WORLD. For some reason, they gave her another dose of profolol right before they brought her back up, which knocked her out COLD. So we just waited, and waited...and waited. Finally little miss came to and we got the flip OUT of there! :)

There is always a strong feeling of accomplishment every time we leave the hospital, even for an outpatient procedure like that day's lung scan. It's a great feeling, though I wish we didn't really ever have to take her in.

So anyways, now we wait. We have a followup with Ava's cardio on Friday, he SHOULD have the results by then. I say should, because it will have been a week later and that is the whole purpose of this visit. I also say should though because I know how things go...So let's hope for some great results from the great placement of her stent and no more intervention for a LONG while. PLEASE please, please! I will update after Friday.

In the waiting room, sleepy and HUNGRY.

In recovery, very sleepy mama.

Day after, having fun at the park with our friends, the Weaver's! <3

Strike a pose, sista!

The week ahead...

2010-01-11T15:41:00.000-08:00

Here is why I am hoping beyond hope that this week goes by slowly. We have to make a trip to UCD this Thursday for yet ANOTHER lung perfusion scan. Standard check to make sure everything is functioning well after the last heart catheter/stent placement.

Here's why this one is making me nervous. Well, more so than usual. Ava is going to be unconscious for this one. At this age this is, I am told, standard because do YOU know of a 3.5yr old who would be happy to sit perfectly still for at least 20minutes(seems more like an hour PLUS) on a cold bed w/machinery surrounding her? Yeah, me either.

So this Thursday, 1:30pm, we report to a place we know all too well in a building we know even better. It sucks. That whole hospital(parking garage included) gives me serious anxiety. I know it's this mental block I need to get over and on with, easier said than done though when you have seen your daughter go through even a fraction of what little miss had to go through in the first few months of her life before she even came home, and how much of a struggle it was to GET home.

Anyhow, enough of this Negative Nancy shtick. Ava is a strong, brave, resilient little girl. And I am somewhat relieved the she doesn't have to sit there awake for this stupid procedure this time, it breaks my heart seeing her strapped to that stupid bed terrified and the genius people in charge think offering her a lollipop and constantly reminding me that it would be best if she were calm, are helping. Wow, I sort of totally jumped ship from Negative Nancy to Bitter Betty right there. :)

Please keep Ava in your thoughts and prayers, that she has no adverse reaction to the dye or to her sleepy meds, and that her pulmonary arteries are behaving themselves, PLEASE be behaving yourselves, PA's. Thanks all! Will update after Thursday!

Oh, and on a much more positive, not to mention totally cute, note, Ava starts pre-ballet this Wednesday! She's super mega excited. YAY!

Heart Hugs always,
Jen

Please excuse the dust...

2010-01-07T10:22:00.000-08:00

Still working on Ava's blog layout. I am making the background and header myself in photoshop, and I only semi-halfway know what I am doing. If anyone knows how to make those nifty photo buttons for your blog, please let me know! STAT! :)

Ho Ho HO!

2010-01-05T21:45:00.001-08:00

Kind of late. But our Christmas was a good one. A super one. A magical one. Just like they should be!

The kiddos had their own Advent Calendars, of the 99 cent Trader Joe's variety! Don't judge me. One of these years(only been saying that for 9 now) I will fill up one of those super cute fancy ones with a super cute fun activity to do each day and seal it with loooove. Pfft. Like when I have grandchildren, maybe. Sorry offspring, but until then you're just going to have to settle for a piece of chocolate and a hug during the 24day countdown to Christmas. :)

We made(the kids made) a lovely Gingerbread House, and didn't kill each other in the process. Photographic proof...

We attended the Kelly Karnival at Greg's school. The kids had super fun noshing on pancakes and other breakfast fare. Followed by some fun crafts, but you can definitely tell G probably won't be asking to attend next year. Plus he said my pancakes were way "tighter" than the ones at the school. OOoh, score one for THIS betterthanschool's pancake-makin mama!

Caught!

And then trying to act innocent...

Again!

Can you tell the decorate your own cookie table was a big hit with my kiddos? I swear I feed them regularly at home...

My lovies.

We made our annual trip to Sloughhouse and picked out a rather plump tree. Then the kiddos helped decorate. And, of course, willingly posed next to the tree while doing so. Promises of m & m's played no part, swear...

And inbetween all the madness, gifts were wrapped, lights were seen, homemade hot cocoa w/marshmallows was consumed, MANY many times(by the kids, of course), baked goodies were made and delivered, and so on. Finally, it arrived. Christmas Eve. Which also happens to be my most wonderful hubba hubby's birthday! I won't disclose his age, men at his stage of the game really don't appreciate such acts. So we traveled out to Lincoln to visit Greg's side of the family and celebrate the birthday's(it is also Greg''s stepfather's birthday on Christmas Eve) We ate a most delicious dinner made by Carol, visited, played games. Then the time came for the mini's to put out cookies for Santa and his reindeer and get their shut eye on! I didn't stay up that much longer, just long enough to help Santa fill the stockings and put out the Santa Gifts. In the morning we woke up, Mama Carol made a very yummy breakfast, hubby came back from work(he's on the graveyard shift, total lameness :() and we all opened gifts. The kids made out like bandits, like they always do, and were so happy and thankful for each gift they opened. Greg and I also received some very nice and thoughtful gifts.

Later that day we came home and had the second and third round of gifts. These kids are SPOILED! :) All in all it was a really great Christmas, the ONLY thing that would of made it better would of been husband not having to work and the whole time. But this is what he does for his family, and I am forever thankful to him for ALL that he does. I am one very lucky wifey/mama. :)

And just a few more photos, for those still with me on this one...

So Much I Am Thankful For

2009-12-31T19:33:00.000-08:00

Thanksgiving was fantastic. Husband was home(a rarity on any given holiday), MY BROTHER CAME HOME for a two day visit from his TEMPORARY home in Montana, Ava ATE her first Thanksgiving meal(as well as MANY many snacks), I made a very fantastic and delicious turkey, as well as some yummy sides, Gbo and LilG played football outside while Ava and I collected and studied many various leaves, great day indeed! :) Hope all my friends and family had an equally wonderful Thanksgiving and remembered to be thankful for what you have!

Don't have all that many photos, too busy enjoying the fam to really whip out the camera, but here are a few of the many daily blessings I am thankful for, otherwise known as my kiddos/mini monsters...

Fit for a Princess...

2009-12-31T15:11:00.000-08:00

So thanks to the amazing group we are a part of, Hearts of Hope, we were offered free tickets to attend the Disney Princess on Ice show a few months ago. Ava was sooo excited! Even more so because our favorite Heart Mommy/Daughter duo, Michelle and Maddie, were also going! Hooray! We carpooled it out to Arco, bought the girlies some ridiculously priced, but absolutely necessary, princess memorabilia(specifically a light up tiara(that broke a couple of weeks later) and a cinderella wand(that didn't even make it home). We then took our seats, took a few photos of the super cute heart bff's, and enjoyed the show. Or, enjoyed watching the girls enjoy watching the show. I am sure Michelle can feel me on this one. ;) Ava was in Disney Princess HEAVEN! So glad we were able to go, especially with such great friends. Thanks Valerie, and thanks Michelle and Maddie! <3

A few photos, as always....

Halloweenie goodness

2009-12-31T10:26:00.000-08:00

Halloween with the kids was great this year! G says that he is too old for the traditional store bought costumes and instead opted to just wear his baseball uniform, okay by me! His dad and I certainly didn't mind saving about $80 on a costume for him. Though it's just another sign of how fast he is growing up, which makes me :(

I showed Ava some costumes online and let her pick out her most favorite. Which was of course a Purple Fairy Princess getup. One that was VERY similar to a costume she wore a couple of years ago, probably because it was purchased at the same children's store, gymboree. Anyway, she made a super duper cute flower fairy princess and enjoyed the dressup aspect of Halloween very much, no surprise there. The walking from door to door and asking complete strangers for candy...not so much! She was okay with it for probably 6 or so houses, then she was DONE. Which is exactly how Gregory always was and still is. Kind of crazy, because husband and I can remember BEGGING our parents to take us to "just one more house/street/block/etc" we could have trick or treated into the wee hours of the night. Idk, I guess I should be thankful they aren't so grubby over candy, but they are sorta fuddy duddyish about it. ;)

So here are a few photos of the night, as well as a couple from the Kelly Karnival Gregory's school holds each year, we didn't make it to Ava's carnival this year...

Time to play catch up

2009-12-31T10:22:00.000-08:00

Hi all,

It has been SO super long since I have updated Little Miss' blog. Sorry. :( So much has happened in the last few months with many changes, nothing major really. Just enough to keep me utterly scatterbrained. More so than usual. ;)

So I will try to pump out a Halloween, Thanksgiving and Christmas blog today. Look for them later!

Heart Hugs Always,
Jen

Pumpkin Patch Time!

2009-10-29T11:35:00.000-07:00

Well, we finally made it out to the pumpkin patch this year! No, it wasn't our usual Bishop's Pumpkin Farm trip, and it was a VERY short visit, no thanks to the wind and Ava as well as myself still getting over the flu bug, but the kids had fun non the less and we came home with some great pumpkins. :)

We visited a lil place off Old Auburn Blvd called The Pumpkin Farm(though it truthfully doesn't look like they even grow anything other than CORN there...) on a recommendation from a friend. Plus, it was a LOT closer than Bishop's, which is out in Wheatland, almost an hour away.

Anyhow, The Pumpkin Farm is cute, it has the hay rides and the train and all that other stuff, though we didn't partake in much other than the petting zoo(ick, yes I have a serious aversion to petting farms, always have) and pumpkin picking. The kiddos had a blast picking out pumpkins and petting those darn animals. The wind was seriously kicking that day, though. We soon found out that lil miss has the same disdain for the wind that she has always had...bummer. Not as bad as it used to be, though. Ava used to do this odd thing where she would gasp and kinda laugh but also kinda...not breathe in a gust of wind. Yeah...odd. She doesn't do that anymore, this was an infant thing, but she still really isn't a fan of wind. Who can blame her though!

A few photos from our trip...

The "F" Word.

2009-10-28T12:38:00.000-07:00

So last week Ava finally caught it, the FLU! As much as we were dreading this and doing the best we could to prevent it, we still knew it was coming. Not ONLY because Ava is now enrolled in Preschool and exposed to that many more dirty, germy little hands, but because this is the first year of her life that she is NOT receiving the synagis(RSV) shot every month through the flu season. I was terrified, because very often, as many of us heart mommies know, FLU, or even just a common cold can result in a not so fab ER trip/hospitalization. BUT, I can't keep this girl in a bubble, as much as that thought sometimes appeals to me, so you just have to be ready, for anything.

So, Ava was complaining of tummy aches and had some serious mudbutt going on(TMI, I know, I know. But many of us ARE parents, and is there even such thing as TMI once you are a parent?!) for a few days before she spiked a 104 temp. Before the fever broke Ava was running around like the usual, lovable little maniac she is. Once that fever spiked though, she was sleeping all day, had no appetite and had a little accompanying cough. It took everything out of her. Her eyes got droopy, though she never once complained, and after her very loooong naps, she would often wake up and instantly start doing her usual dance and singing into a microphone(either her wand, hand or blanket), though that wouldn't last longer than 5 minutes and was followed by another nap. Always in good spirits though, that's my lil diva girl! :) I didn't get too terribly worried though(HAH, right...) until I noticed her breathing started getting just a little bit faster. We put her cardiologist on alert, and dusted off the good old oximeter machine, stats were "good" not great, but not bad either, thank goodness.

Husband and I went back and forth and back and forth weighing the pros and cons of keeping her home and monitoring VERY closely vs taking her into the ER and risking her catching something possibly worse. In the end we decided that as long as she wasn't at ALL showing any signs of distress, we needed to keep her home and as comfortable as possible. After 3 heart catheterizations just this year, Ava has serious anxiety any time we even pull up to the UCD parking lot, and who can blame her. She is terrified now anytime we go to any Dr, where before she had no qualms and trusted them all, she wakes up at night and needs reassurance that we are right there and she is safe, none of this was a problem before the multiple hospital visits this year. It's pretty heartbreaking and definitely will play a part in my decision making about whether to expose her to any unnecessary hospital and even Dr visits from now on.

Anyhow, Ava's fever broke a few nights ago, the following day her temp was running just a little low, the lowest it got was about 96.5, but it shot back up by night's end and has been in the normal, non-temp range since then. Ava is still super lethargic, sort of pale, a bit weak, and doesn't have her full appetite back just yet, though. :( I am just hoping this is the last I have to hear of the flu for the rest of the season! We are done with you, flu. Be gone.

How a Diva Finger Paints...a photo post...

2009-10-16T16:00:00.000-07:00

There are no real updates/news in the world of Ava, so enjoy the photos. :)

Sorta-Sick Ava

2009-10-10T09:03:00.000-07:00

So last week Ava seemed a little under the weather. It started off with the usual symptoms, a runny nose, intermittent cough, etc. Then she started complaining of a tummy ache, which had us a little concerned, especially when she got sick to her stomach and was running a low grade temp. But it didn't turn into anything serious, at all, and by the next morning, the temperature was gone and Miss Diva was up to her usual perky, mischievous, rambunctious self. Hooray! :)

I do have to admit, though, that we ALL really did enjoy a day of Ava a little more chill than usual. She wasn't running at her usual insane energy level, but still had plenty to play. Ava spent the day in her princess dress up, coloring, playing with building blocks, watching movies, and spreading fairy dust with her magical wand. A few photos of a VERY tame Ava. It was worth capturing, who KNOWS when it will happen again. ;)

And the best part(aside from her kickass immune system fighting off her sickies before it turned into anything too terrible), she partook in NAP TIME! :D

Soccer Sweetie!

2009-09-25T13:54:00.000-07:00

We signed Miss Ava up for a Mommy/Daddy and me soccer group, which just started last week. We meet weekly at Carmichael Park for half an hour in the am and the kids do some super CUTE, super basic soccer drills to kind of introduce them to the game of soccer and peak that interest. I am really excited for Ava to be in this, especially because we were able to join with her dear sweet heart twin Maddie. Maddie and Ava are only a few months apart in age, both have amazing and beautiful mended hearts, as well as DiGeorge Syndrome. Maddie's mama and I met a while ago and got to talking about our little divas and were in absolute SHOCK over how much the two shared in common. I am so thankful that our families met and our daughters will have each other to lean on and support as they grow, as well as their mommies having someone who literally knows EXACTLY what the other is going through. Huge blessing!

The Divas...

So soccer seems to be going well. Finding shin guards and cleats(gave up on those) posed to be quite a challenge, they just don't make much sports gear to fit these lil kiddos! Ava is L-O-V-I-N-G every single minute of it and finally has a female friend that she doesn't shoot dirty looks at in the few and rare moments she's not altogether ignoring them. Heh. And seriously, there is probably nothing cuter on this entire PLANET than seeing two little girls who have been through more than many of us ADULTS out playing together amongst their peers and not only keeping up, but kind of kicking some butt, too. :)

A few photos...

AHA Start! Heart Walk 2009

2009-09-23T17:07:00.001-07:00

Thanks to all who came out this year to the Heart Walk and got your walk on in honor of our little heart diva as well as the many other children and families affected by Congenital Heart Defects(CHD). We had a pretty good turnout, thought not as large as our first year. Oh well, just gives me that much more motivation to get out there next year and really recruit all of you who didn't show(excluding the ones who couldn't , you were there with us in our hearts that day ;).

We started this tradition of participating in the walk just last year. It was the first time I had really heard of the walk and knew instantly this was something we wanted to do not only to help promote awareness, even if only locally, but to make a lovely tradition we do yearly, JUST for Ava. Something she can look back on and be proud of. Seeing how so many of her friends and family spend months soliciting donations, recruiting team members, ordering shirts and come out much too early for a Saturday, to walk 1 or 3 miles, just for her. A very small tribute to the little girl who has already endured more than most of us ever will in our entire lives.

With that being said, I truly hope to see more family and friends out in the coming years! :) It's really for a great cause and is probably the best you will ever feel waking up before 8am on a Saturday. Plus, it only takes less than an hour to do the 5k walk, and it's just one day a year! ;) Another gigantic, heartfelt THANK YOU to those who have joined us the last two years, you all are amazing!

Not many photos taken this year, but here are a few, the above picture is the image that I put on the back of Ava's shirt, it's perfect!...

Preschool, Take 2!

2009-09-14T16:15:00.000-07:00

So because of Ava's cath being scheduled one week after school started, Miss Ava had a two week break and started school again today. This time, we were ready. ;) Ava has really been eager to get back to school, to class, to her teacher and her "friends." We arrived to class this morning, and Ava is playing, a bit apprehensive at first, but that's her, always. But she warms up a little and is drawing on the chalk table(whoever thought of making a chalkboard topped kids table is a freaking GENIUS!) and notices many other parents saying goodbye to their little ones, and leaving. I see the lip start to take form...We let her play a little bit more and then when we are pretty much the only parents left, we start to say our goodbyes. The lip is in full effect now, she is trying SO hard to not cry, and clings onto me for dear LIFE. Her teacher comes over and suggests picking Ava up while we say our goodbyes and leave, to see if that helps. Ava practically jumps into teacher's arms(mom suddenly = chopped liver) and they start talking about all the fun they are going to have today. So we tell her we will be back soon, and leave to smiles and waves. YAY! Upon our arrival teacher tells us Ava had a super great day and didn't cry or pout one single second after we left! Success! A few photos from the day...

My, how she has grown! I cannot wait to see what this next chapter in my little diva's life unfolds. :)

Echo/Followup Appt News!

2009-09-14T09:45:00.000-07:00

So last week Ava had an echo, to check the overall function of her heart, and to also check the placement of the stent that was placed in her last cath, as well as check on that leaky conduit. Ava did really well during her echo, I layed beside her and we watched, "Dora Saves the Mermaids" while our lovely echo tech did her magic. The whole thing only took about 45minutes, and only took that long because Ava's aortic arch is always tricky to see.

Miss Ava doing her cath thing, what a pro...

So a few days later we met w/Dr. Van Gundy to go over the echo results, as well as followup on the Cath and make sure the site was healing well, etc. Ava was definitely healing well, hadn't developed a cough or anything else like that. So we moved on to the Echo. Everything looked pretty good, overall. But the conduit was still very leaky. So he said the next step is presenting her case at the next conference. He said his choice is to leave her be for now, but it is always a "group" decision. Plus it's always nice to have the opinion of many dr's, something I really like about the conferences they hold. He said we could chose to have her lung perfusion now, or we could wait. And in his opinion, we should wait a couple months out. We agreed, let the girl rest and stay the heck out of the hospital, hopefully until next year. The lung perfusion will show him the pressures on each side, and how much more he needs to dilate her stent on the left side. Which he can't do for about 6-9months from now anyways, so we REALLY might as well wait on her perfusion. :) Next checkup with cardio in 6 months, and he would let us know what was discussed at the cath conference. He also briefly inquired about where would we like to have the next OHS done, etc. Even when you KNOW your child needs more surgery, to actually talk about it, makes it real. So I had to take a minute and let my heart catch up with my brain. After that I was okay though. :)

So while waiting to hear how the conference went, I was a little worried, because you just never know, they could of all decided the leaking is too much, and got the got the OHS wheels in motion, set a date right then and there. But luckily, we are going to wait, we are going to do the perfusion scan, dilate the stent, and do another echo, check and see what is going on at that point. No talk of surgery = HAPPY MAMA. I know it is still in the future, somewhat near future, but we have time to worry about all that later. I love time. :)

Haircut Honey!

2009-09-10T21:01:00.000-07:00

So on Tuesday, after Ava's Cardio appt(which I will get into in another blog at a later date), we stopped by this kid's hair salon(Tangles, off Auburn Blvd, but moving soon to somewhere in Roseville) 1, because it was on the way home, 2, because Ava's auntie Brie takes her boys there and she's been satisfied with the quality, 3, because it was $10 Haircuts Tuesday, and lastly, because Ava had SPLIT ENDS and a wonky "Mama haircut". This was her first "pro" haircut, but it was definitely time to get something done with that mop up on top of her head, by someone who would actually know what they were doing with a pair of shears. :)

The actual place is cute, in a you probably have to be a BOY to fully appreciate this sorta way... But I liked that I didn't have to make an appointment, and hey, if the experience was terrible, we were only out $10. Ava was not so keen on the water that was sprayed on her hair, because some of it got on her face, and, well...she's a diva. But despite Ava taking turns mean mugging the stylist and whipping her head from left to right and back again, we somehow got about 4 inches cut, and it's definitely more even that I ever got it. :)

Plus, Ava was given one of her most favorite, but seldom allowed treats, CANDY in lollipop form. Mmm.

So, this is what we started out with...

And this was the final result...

A pretty darn cute cut! :)

The Good, The Bad, And the AVA.

2009-09-01T07:38:00.000-07:00

Ava had her third cath of the year, second time trying to place a stent, and....IT WAS A SUCCESS! :) So as the sign her Daddy made her so clearly states, AVA ROCKS!!! The good.

Dr. Van Awesome(Gundy) found that little Miss Ava's Left Pulmonary Artery was only 2.5, normal is 7, in size. The general rule of thumb is to only double it's size at one time, so we got it to 5, Part 1 of the bad. Ava will need the stent to be expanded in 6-9 months to get that LPA to a better size, Part 2. Dr. V found a huge increase of leaking from Missy's shunt, part 3. Now, it's been leaky for awhile, that's just how it goes. But part of the possible reasons for the sudden surge may be the wonky pressures due to her LPA being SO stenotic. SO, the stent MAY help, it may not. Ava will have an ECHO in 3 weeks, and then every 3 months after to check that darn leaky shunt.

A run down of the day...We all woke up around 4am, were out the door by 5:10, made a quick stop at Starbucks(necessity) and was at UCD admissions just after 5:40. Not bad. They changed around how they admit Cardiac Cath's now, so Ava went straight to the recovery area instead of up to 7, then back down to 1 where the Cath Lab is located. Makes sense, and this way we don't have a "neighbor" we are worried about Miss Crazy waking up. A little before 8 the anesthesiology crew started appearing and we made our way to the lab. Ava was given a med cocktail(versed and benedryl) that made my little chica QUITE giggly and loopy. She was laughing at the lights, found it hilarious that she had a nose, and was singing up a storm. So instead of her usually scowling at everyone right outside the cath lab doors while they are prepping for her inside, she was waving and saying hi to everyone and serenading them in between random giggle fits. :) Plus, she got VERY sleepy. So we took her back once they were ready, they let me stay until Ava was asleep, Greg watched through the partitioned window, and we made our way back to the waiting room. I am thinking we got back in the waiting room just after 9am. We sure didn't have to wait very long, Dr. Van Gundy came out around 11:30(though I overheard the front desk lady on the phone with recovery telling them that, "Little Miss Bolima is about 30Min's out", so I allowed myself to imagine all had gone well since there were no other orders with that call, and it had been such a short time. Luckily, I was right! Dr. told us the news, which I went into earlier on here, and we waiting about another half hour, 45Min's before they collected us and we walked Ava back to recovery. Now, there was two super nice nurses taking care of missy in recovery, one of which said she TOTALLY remembered Ava from before(3 years ago) when missy was up in the PICU. She was super happy to see Ava and how well she looked. It's always really nice to see people, Dr's nurses, etc, that ONLY knew Ava from that time, for them to see her now, the reaction is always the same. You could literally pick their jaws up off the ground, and the smiles are infectious. I love the gentle reminders of how far she has come. So they get Ava all settled into recovery, and tell me that she will probably remain asleep for a couple of hours, a minimum of an hour, though. And once she is awake they will remove the oxygen mask and we will make our way up to 7. Not 15minutes later guess who's eyes go FLYING open?! And what's the first thing she does, YANK that oxygen mask off before anyone can react and then she goes straight for her IV, boarded up hand. Luckily, we could stop her before she yanked that thing, but barely! This girl has some serious superpower strength when she feels the need to. Of course, she was really, really angry and screaming like she's never screamed before, thrashing around, you know, all the things you should NOT do just an hour after a cath/stent placement. So they gave her a little bit of morphine and Ava calmed down instantly. We got up to special care on 7, and see yet another familiar faced nurse. She recognized Ava by name and said again how healthy and big and beautiful, etc she has gotten now. :) We had quite a few more faces pop in to see Ava that day. Even Velma, the super sweet social worker. LOVED her. Ava was kinda quiet and you could tell she was upset with us all, but did not fuss or complain. As long as we let her eat what she wanted to, and watch what she wanted to, and kept nurses out of her face(lol), she was a happy camper and finally came around and stopped saying she was mad at her Mommy and Daddy(again, who can blame her, though). So we watched Dora the Explorer and 101 Dalmatians about 100 times each, Ava ate lots of yogurt and Doritos, drank apple juice and we waited. There was a bleeding issue while we were still down in recovery, her cath site started bleeding heavily and that caused some concern with Dr. V. Of course. And then again, though not nearly as severe and it subsided on it's own once we were in Special Care on the 7th floor. So basically we had to wait the 5 hours, PLUS, to make sure it didn't happen again. We checked her at 7:30, no bleeding, GREAT! Dr. said to check again in an hour, if there is still none, we could go home...Ava's night nurse checked again, all was OKAY, so she got the discharge papers together, the IV out and away we went! Ava sang at the stars the first half of the car ride home then fell asleep, and stayed asleep until about 4:30, 5am this morning. She wanted hugs and kisses and said lots of I love yous. Sweet girl! Her daddy got her back to sleep, though. :)

All in all, we are so happy and so relieved that our diva has that stent finally in a PERFECT spot. It is a huge relief. And while we MAY be looking at another surgery much sooner than originally anticipated(to replace the shunt), we may not be, either. We will cross that bridge when we get there. This is our life. We left that second amazing huge double ventricle repair knowing that although she didn't need that third repair OHS, she would still need a couple more OHS, to "replace parts". We are still very lucky, very blessed, and I hope we never lose sight of this. We have a darling, loving, bright, sunny, brave, happy, independent, adventurous little girl that makes friends with everyone she meets. Ava does day to day things that we thought we might never see her do, I wake up every day and am SO thankful. I seriously wonder how we got so lucky.

A few photos from the day...

-The very nice lady in the waiting room let Ava pick out some stickers. Ava of course, picked the hearts, and proceeded to stick them all over not only her face, but her baby doll's face as well. :)

-Ava drew this super funny picture and when I asked her who it was, she pointed at her nurse, hee hee! Pre-cath.

- In recovery, just a little oxygen mask until the diva full woke up on her own.

-Ava wanted Daddy's hat. Not very happy with anyone, who can blame her, though!

-But all smiles and snuggles by the end, that's our missy! :)

Pre-Cath Bubble!

2009-08-27T12:19:00.000-07:00

The week prior and the week following a Cardiac Catheterization on Miss Ava, I like to be extra cautious and keep her as away from the general (germy) public as possible, without any of us losing our sanity! Which you would think would make for a super long, dragged out, boring weekend.

NOT SO! Mainly, because I appreciate and relish in how slow the week before a cath goes, especially after the "year o cath's" we've had this year. Ugh.

So because Ava's first day of Preschool sort of completely blind sighted us, she DID attend school on Monday, but we made sure to get the OK from her Pediatric cardiologist to keep her out of school the rest of this week and all of next week, HUGE relief. I would of kept her home regardless, but it's always nice to have a doctor backing your decisions. :)

And I DID take her to Sutter Memorial with us on Tuesday to drop off some care packages, she is my inspiration to get involved and reach out and try to help other families going through what we went though and continue to go through for over 3 years now, I wanted her to experience it. Plus, we were in the lobby the majority of the time and it was a pretty quick trip with plenty of hand sanitizer pit-stops and "don't touch that!" reminders. :)

But other than those two exceptions, we have been hermiting it up at Casa De Bolima. Lots of dance time, lots of drawing, lots of blocks, lots of learning to play memory and candy land. And even time for playing with mommy's new web cam, which seemed to be Ava's personal favorite. :)

Thank you bunches to the friends and family who understand the lock down mode we go into the week before and after any procedure Ava has, I realize she just doesn't get sick very often and is an otherwise healthy little girl and a few people still seem to think I "overreact" or am being "paranoid" but show me one child who goes through even 1/4 of what Ava has gone through and try to tell me there isn't a terrified parent behind that child ALSO taking every possible precaution to keep their child healthy and OUT of the hospital. Why would we ever risk it.

So, I will ask again that you please send all your good vibes, prayers, chants, thoughts, ETC, to Miss Ava over the next week or so, but especially on Monday(day of her cath). I will update via text and fb throughout the day Monday, as usual. And once we are home and Ava is settled, I will update this blog. Loves!

Ava's First Day of Preschool

2009-08-24T16:15:00.000-07:00

Today I set my alarm for about 6:20, woke up, made some yummy chocolate french toast(recipe: ), ironed G's clothes, made sure his lunch was ready to go, etc. Hubby bathed Ava, then I got her dressed for what we thought was just preschool orientation. We were all out the door and actually on time. Got to Greg's school, hubby dropped the kids and I off while he found parking(the neighborhood surrounding the school turns into a ZOO the first couple of days of school and at any school event!) Watched lil man try to ditch his sister and I to go hang out with his friends, I let him(he's a 4th grader, I SUPPOSE I should go ahead and cut that cord now. ;P) Saw and talked shortly with Greg's teacher(same teacher he had last year, she now teaches 4th grade again), got assigned some MORE books to code(new system in the school library and I helped out last year, and I guess I am helping more this year...), I took a paparazzi-style photo of G in front of his classroom talking with his friends, it's the ONLY way to get a picture of him in front of friends these days, good thing I have awesome camera ninja skills. :P We also stopped in to the Kindergarten room, which houses the GREATEST Kindergarten teacher of all time, seriously, this lady was just BORN to teach, especially Kindergarten and I cannot WAIT until my second child is in her class. But, it was a bit chaotic in the Kinder class, to say the least, so we ducked out before being able to say hello. If you're reading this Mrs. Blaine, HI! We will try to stop by Wednesday to see you again. :)

We make our way over to Ava's school, which is about a mile away, if that. Walk to her classroom, and what do I see...parent's leaving without their kids, and once we get into the class, I am seeing lots of little backpacks on their assigned hooks...oh no...I see Ava's teacher, rush over and ask, "Isn't this just the orientation?" She informs me that it is a small meet and greet for the parents before class starts and we are more than welcome to stay as long as we wish today...DARN IT! :( Ava didn't have her super cute first day of preschool outfit on or ANYTHING! Bummer. Plus, I so was not mentally prepared to leave her somewhere today. I hadn't snapped any photos of her walking up to her first day of class, we didn't have her backpack or little Ava lunch, nothing! So on top of just being that silly sad mommy watching her kid play quite well by themselves, I was sad because I like to "plan" and "document" these days, start new traditions, etc.

But anyhow, Ava started playing very well by herself so husband and I thought it was a good time to go pick up that backpack and lunch, I told her we were leaving and that we would be right back with her backpack, she yelled, "Bye BYE!" and gave me hugs and kisses. The picture of "I'm SO ready for preschool, Mom" perfection.

Fast forward about 15 mins when we get back to the school, we park directly across the street from her class and as soon as I open my door, I hear kids screaming. Of course I instantly shuffle through the cries to see if one of them sounds like Ava, they do not, I calm down. We make it into the room and one of the teachers rushes over to me and lets us know that Ava JUST stopped crying...darn it! She is sitting in circle time and has her back towards us, luckily. But she turns to look at someone and I see her lil red face and dried tears, poor Ava!! So we decide it's probably best to sneak back out before she sees us in case our departure is what started the tears, now that she's fine and singing along with her class...

Once we picked up Ava, she met us at the door with her teacher and was all smiles, happy girl. She had lots of fun, and is looking forward to going back on Wednesday.

So today was definitely crazy, and didn't go as planned at all. But it was also a great day. After we picked up Ava from school, we headed over to Andrea from Hearts of Hope and picked up some more items for the Care Packages I am working on. We have the first delivery since Michelle and I took over planned for tomorrow at Sutter Memorial. I still do not have everything for the packages, but they are coming along nicely, and I am thrilled. :)

Today, I am officially the mommy to two school-aged children. Time sure does fly... :)

When I Grow Up...

2009-08-10T15:48:00.000-07:00

Every child loves to imagine what they will be when they grow up. Limited only by their imaginations, they could dress up, play and pretend for hours on end and daydream of the day they will be a world renowned doctor, an Olympian, a chef, a famous rock star,a veterinarian, etc. I know I certainly did, and both my children are no exception...

For many kids, however, life unfortunately is more about hospital visits, medications, keeping track of calories and weight gain, and just trying to get through today than it is about imagining the beauty of the future.

Luckily for us, there is a local group dedicated to giving heart children a sense of normalcy. The group is called 'Angels For Hearts' and they sure do live up to their name. This past weekend we were lucky enough to be invited to an event they were holding at UCD. The event, "When I Grow Up..." was aimed at heart children under the age of 18(I think...) and was meant to help them to remember that, "Dreams are only limited by imaginations." There was a firetruck, ambulance and race car parked out front, there were firefighters, ambulance/EMT's, police officers, a nurse and a doctor, a ballerina, teacher, chef, etc available for the kids to talk to and lots of hands on crafts to entertain. The Firefighters outside gave great tours of the firetruck and answered any and all of my son's many, many questions, even took him up to the top of the truck! There was food catered by Panda Express and yummy ice cream afterwards. Great little goodie bags stocked full of great stuff went out to each heart child, Ava was most fond of the bubbles(no surprise there!

We originally thought we were going to be out of town and miss this event, but due to Ava calling the shots(and a 24hr tummy bug) we were able to attend. SO glad we did! Both of my children were treated so well, they had a blast and it was the talk of the weekend! Every person from this group, whether it was someone who started the group, someone there just to help volunteer, etc, were very nice, called each child by their names and offered up plenty of positive praise. A very generous and thoughtful group of people who genuinely care about the children they are helping. I love it. :)

Some photos from the day...