Let's try this again...

So the NEW date for the NEXT cath on little miss is set for Monday, July 20th(planned for the week after summer preschool lets out). I say a quick recap is in order, shall we? Okay, this will be the third cath this year, 5th total. The first cath the doctor ran into a new issue when he discovered that not only was Ava's left pulmonary artery narrowed, but so were both of her right PA's. After discussing with the Surgeon, they together decided it would be best to "halt" the current cath/ballooning until a best plan of action could be decided upon with this new found information/situation. The doctors met, decided to go ahead and only balloon/stent the left side. Cath date was set, we ran late, the stent became dislodged, dr successfully retrieved it in the Cath Lab and placed it on the right side. Ava was observed for 24hrs then sent home. :)Doctors met yet again and ruled out placing a new stent on the left side via OHS, because of WHERE the narrowing is located, too risky for a "simple" stent placement. So another Cath Lab time was set, about three weeks from now. Ava's cardiologist is using a different size/shape of stent, and is very confident a third time will equal SUCCESS, and keep us out of the hospital for at LEAST the rest of the year(sans unexpected bad stuff we don't entertain thoughts of)! Too early to say wahoo? Nahhh, WAHOOOO! Yes, I also knocked on wood, come on now, this is Ava we are talking about here! ;)

I can't wait to have this over and done, though it terrifies me so to face another Cath, especially since Ava seems to be in a "Surprise and terrify the holy crap out of my parents" kick, it is needed. And just short of a Heart Cath worst case scenario(*knock, knock*), another cath beats out a third Open Heart Surgery. Blows it out of the water.


So, as always, I ask all my loverly family and friends, to send the happy&healthy thoughts, vibes, prayers and chants(Hi Luci! :) Ava's way!

Love love love,
Ava's Mommy

Preschool Princess!

So Monday was Miss Ava's first day of Preschool. She is enrolled in a 5 week preschool summer program held at a nearby elementary school. She goes two days a week, from 8am to 12pm. I was so super nervous the day before and morning of, but Ava was pretty much the opposite, SUPER excited anytime someone mentioned her going to her first day of school, she even did her happy dance. :)

Once we got there I thought, "Well surely now she will start to get nervous and clingy...right?!" sort of like I NEEDED to her need me. Nope, she saw kids, saw a playground, and in Ava's mind 1+1=2 and Ava + playground = FUN! She booked it over and played and played and played. For the most part, she seemed to keep to herself though. Tends to be how lil miss is around other kids she doesn't know well, though. Who wants to share the spotlight, anyways. ;)

So we met Ava's first teacher, super nice lady. And saw a friendly familiar face from the school where Ava will be attending this fall, which was definitely nice and helped calm my nervous overprotective mama nerves a bit. Just a bit though, let's not get carried away.

I stayed and observed the class for a bit, only left because my lil missy kept turning in her seat to wave at me, when she was in her seat at all. Other times she was running over to me to wave and give hugs, trying to drag her chair from the front of the classroom to the very back where I was sitting, etc. So as much as I didn't want to move a muscle until 12:00, I got myself up and said my goodbyes during a bathroom break(still no tears on her end, sigh) and went home. Where I texted with my two besties, looked at the clock every 22minutes, and uploaded photos off my phone and camera of the Diva until it was time to head back to pick her up. I got there a bit early, no surprise eh, and caught the end of lunch time. Seeing her sitting at a desk, eating all by herself without Mommy's help, she looked so grown. :) The teachers told me she had a fabulous first day of preschool, awww. Atta girl!

Ava with her teacher on the first day of school.



Ava before going to her first day of school! :)






Always,
Ava's Mommy

Ava is well versed in the game of SURPRISE !!!

This photo was taken the day before Ava's last Catheter. So yesterday, June 1st, we reported to the UCD Cath Lab at 7am(yeah, late, really late, but still on time, gotta love it), for the Cath we have been waiting/planning/praying for and worrying over for pretty much this entire year. They started the procedure at approximately 9am with a 3-4 time frame put on how long it would take from the time we left Ava's side to the time Dr. would come talk to us, after everything was over. We did not see the Dr. until 2:30. A bit worrisome, but I tried to not let my mind run rampant with "what if's". So Dr. Van Gundy takes a seat and tells us first and foremost that Ava is fine, and he is sorry we had to wait so long to hear anything. Even he knows I am a total worry wart. :P Then goes into explanation of what happened. He placed the left PA stent...and it was pushed out by the pressures and kinda started floating off further into her pulmonary artery. So he quickly retrieved the wandering lost stent, and then placed it in her right PA, where the pressures are even higher...But he was confident with where he placed it. Though confident, he needed to observe it for 24 hours to make sure it also didn't become dislodged. And more importantly, we needed to keep Ava fully sedated/paralyzed so that she wouldn't be coughing/moving around and help dislodge it. So then I ask him where exactly that leaves us with her STILL unstented, unballooned narrow left PA. The answer, of course, Surgery. Going in surgically will allow them to use a bigger stent than they can via cath, which gives it a better chance of "sticking". Why did I ask. Especially when deep down I KNEW. So to the East 7 PICU we went. A very familiar place, even almost 3 years later.

Anyhow. It's funny, absolutely everything about that place came back so sudden. Everything. From where to throw the dirty linens, to where to find clean linens, to the ice machine, to a few of the nurses we really liked, to very specific moments and memories of Ava from when she was first there, the good and the bad. I was remembering it all. To be perfectly honest, that place still scares the holy crap out of me, and makes me on the verge of a full blown panic attack nervous, even when nothing is really going on, but I doubt that will ever change.

Ava stayed fully sedated and paralyzed(though she kept fighting through the sedation and waking up, which had to be terrifying for her considering she couldn't move or open her eyes, but talking to her and hugs, as well as extra versed, helped) the first night, as well as intubated, of course. The night was pretty uneventful, an Ava/UCD first! This morning we started slowly weening meds and the breathing machine. That went perfectly fine. Then out came the lines in her leg from the cath(they kept the catheter in in case they needed immediate access because of a dislodged stent, and there was also an art line. Both were in her left groin) Then came the food. Then came keeping the leg still-ish and resting for 4-5hours of observation. Then came HOME!!! Ava fell asleep on the way home, and is now in bed. Baby girl did so good the last two days!

So where we are at now is tomorrow all the Dr's and Surgeons will do the teleconference deal and discuss Ava's case and what our next step will be, undoubtedly an OHS. We have a followup with cardio in a week, but he always calls us the day of the meeting to let us know what is going on. I will update when I know more. Thank you for all the thoughts and prayers, keep them coming!


A few photos from the last two days...











Always,

Happy 3 Year Heart Anniversary, My Little Diva!

It was this very day that Miss Ava's heart was partially mended, her very first Open Heart Surgery, at 7days young. The day she was given a chance to live thanks to technology and an amazing team of Surgeons, Doctors and Nurses at UCSF Children's. Almost like the first day of her *new* life. A new start I couldn't ever properly express my gratitude for. I just cannot believe three years have already passed. Over 2.5 of those years spent at home, we are blessed. So later this morning, when Ava wakes up and it's time for the bath, I will look at that long jagged line down her chest and remember her incredible journey. I will say a lil prayer, and thank my lucky stars that I was entrusted to be her mommy. Ava's such a strong little fighter. Thank you for being Mommy's inspiration, Ava. We love you so very much!

More photos from her birthday/anniversary shoot, you can click on any of the images to see them larger...




























She's come a long way, baby! :)

Thanks to everyone who has been there to support us, offer love and kind words and prayers, we all appreciate and love every single one of you!

One last note, please keep Ava in your thoughts and prayers this coming Monday, she will be first case for another catheterizing at the UCD Cath Lab, where Dr. Van Gundy will be ballooning/stenting her left pulmonary artery. With any luck we will be home same day, but as always I am prepared for an overnight stay. If family and close friends would like to visit, please feel free, we will be on the 7th floor after the procedure. You can try to call or text me for further details, or just find us! :P I will try to keep everyone updated on how that goes via texting, phonecalls and twitter. But reception at UCD is super spotty and there is absolutely NO signal in the Cath Lab waiting room, so bear with me on the slow updates, no news will be good news. :)

Always,

Cath, cath-cath-cath...(said to the tune of DUN, dun-dun-dun...)

These photos have nothing really to do with this update, I just thought they were cute and my mom likes seeing new photos. :P


So this thorn in my side Catheterization/stenting is going to (hopefully)happen this coming Monday, June 1st. The timing of it is terrible, for a list of reasons I don't really feel like going into. We have spent the entire first half of this year preparing for this single Cath. I am not really sure how much more MY heart can take. I just want it to happen, for her left pulmonary artery to be stented and to with any hope and prayer be done with the hospital worry game for a while. Please? I know my daughter LOOOOOVES to keep everyone on their toes and make the simplest of chore difficult, but enough is enough, Mama is begging of her baby girl.

As far as other updates, I am not very happy with how preschool enrollment is going. I don't feel very confident sending my daughter to the school she is scheduled to attend this fall or the plan they have for her, but I am still working on everything and trying to keep optimistic. They don't even want me sitting in, ever. :( Perhaps I should light some of that good forture insense my brother has for myself, eh?

That's pretty much all I have for updates right now. Just keep little Miss Diva Ava in your thoughts and prayers for a super successful Cath. Birthday Party, June 6th, hope to see you there family and friends!! :)

Three Years Old !!

Does this mean I can inform her that "terrible two" antics are a thing of the past?! Sure, good luck on that pipe dream being honored, mom. A mom can dream though... ;)

I can't believe three years have gone by. To think there was a time where all we could do was PRAY and HOPE and WISH that we would be able to see even one of Ava's Birthdays, it seems like such a foreign thought now days. But it very much was the reality of things. Not being promised another year, much less three incredibly healthy ones. "Healthy, how can you say healthy when your daughter still has an irregular heart that will always require repairs and monitoring?!" To know my daughter now, to see her, all you will see is a happy, thriving, engaging, precocious, loving and HEALTHY three year old girl. Sometimes shy, sometimes apprehensive, but hey who isn't now and then.

We were told to not expect much as far as development in Ava goes. That she would be severely delayed in almost everything, because "Almost all heart children are, especially those who spend as long as she did in the hospital." We were told she wouldn't ever be one of those smiling, happy babies. That she might fear everyone and everything. She wouldn't ever gain enough weight, eat by mouth, etc. You get the gist. Frankly, I get a kick out of boasting every chance I get to the people involved in saying such things that none of it could be further from the truth!! She has always been a very happy baby, loves everyone she meets, fears almost nothing(unfortunately for me, at times), and as far as cognitively, she isn't delayed in the slightest, sometimes topping charts in that area. Sure, she was in the lower range of "normal" for walking. But she still did it. The biggest hurdle for us has been speech, but even that has everything to do with muscle tone and nothing to do with a typical delay. So THERE, mean, cold, bitter men and women in white coats!

Ava is a blessing, one I am still not quite sure I deserved. She has brought so much to our family, that none of us could imagine life before her or without her. From day one Ava has been a force to be reckoned with. Showing her feistyness before she could even control movement in her fingers! Nothing there has changed, that's for sure! But her strong will and all around feisty side have been a big help for her overcoming these daunting hurdles thrown her way. So rather than curse whomever gave me a daughter more willful than myself and my husband combined, I THANK GOD for it.

Today that little girl that came home after three long and agonizing months in the hospital weighing under 8lbs and smiling for nobody is a happy, energetic, 31 pound THREE year old little diva. Happy Birthday Ava, we love you and are so very proud of you!!!




















Above are a few photo previews of some gorgeous pictures my super talented cousin Tracie took last weekend of the Birthday Diva. I adore them and can't thank her enough for doing a perfectly beautiful job capturing my daughter on film. I will treasure these forever. Enjoy. :)

A New Update, Hooray!

Sorry I have been sort of lagging in the updates department.
Ava is doing great! The cath, as many of you already know by now, did not happen last Monday, as UCD was a little hectic in the PICU(her cardiologist likes to have a bed open for her, as a JUST in case). He really basically refused to do it without a bed guarantee, I don't blame him. And since this cath is not an "emergency" situation, he was comfortable in putting it off. So the new date is set for June 1st. Why do all of her surgeries and procedures happen at almost the exact same time of the year?? I will take it as a good sign though, I suppose. :) Little Miss Ava just needs to behave herself and allow this to end with just a stent.

So in other news. Speech therapy is going well. Very well. Ava has made tremendous progress and continues to amaze her therapists. Her PT and OT stopped coming out, which I guess means she graduated? That's how I am going to take it, at least. :)

This Tuesday we have a meeting with the School District in regards to getting everything in order for Ava's entry into PRESCHOOL!!! Yes, I am beyond excited. No not because I am going to get a few hours of peace, because let's face it, I will undoubtedly be spending most of those hours in class with her just as I tried to as much as I could while Gregory was in the younger grades. But rather because this is a BIG step for my little girl. And something she should be very proud of herself for. We have been working on numbers and alphabet, she basically recognizes the entire alphabet and numbers up to 10. Have I mentioned how proud I am of my little silent heart diva genius?! So that is exciting and I will update all on how that meeting goes sometime next week.

Birthday planning is in full blown crazy mode right now. I have the invites ready to go, just have to address them all and get them out. So expect those soon!! My cousin Tracie is a photographer and will be taking some shots of Miss Diva on the 16th to capture her third birthday, as well as her mended <3 anniversary. Hooray for cute pictures and brave, inspiring little three year old MONSTERS! ;)

Still not fully pottytrained, but making (slow, super slow) progress. We're getting there!!

That's about it I do believe. So now I will leave you with a few recent pics of Little Miss Ava Pants.

-Popping bubbles

-Ava being a monkey on the monkey bar at the park!

-Ava with her new friend, Tyler at Brother's ball game.


Have a Happy Mother's Day to all the wonderful mommies I know, especially my OWN mom! I love you mama!!

We have met some amazing people on this Journey...

Among them, is a wonderful lady named Christine, from Puerto Rico. She spends what seems like every possible minute she has helping us raise Awareness for our little Heart Babies. Simply out of the kindness and compassion of her own heart.

Christine recently made a video montage of Little Miss Ava, to help raise awareness. It's one of many beautiful and touching videos she has put together, so check it out.

Thank-you Christine!


My Montage 4/17/09

Click the picture to view the video. :)

Hoppy Easter! -a few days late. ;)

Hi all! Hope everyone had a most enjoyable Easter with their loved ones, we sure did! Super big THANK YOU'S to my Mom and Dad for hosting the annual Egg Hunt/Food Feast Easter Eggstravaganza! The kiddos had a great time and it's always nice seeing family and watching the lil kiddos(cousins) play together. :) Tons of food, tons of kids, tons of eggs, tons of fun! We are so super blessed to have such a great family!

This Easter was the first one where Ava has really showed any interest whatsoever in the whole egg hunt process. And she LOVED it! It's always fun to live holidays though your child's eyes, recapture that magic and remember what makes these holidays so special, family. The day even ended with my super talented cousin Tracie giving each kiddo a mini photoshoot! As soon as I receive those pictures they will be posted. :)

Here are a few pictures from the day, enjoy.













-Just a little sidenote: We will probably be having Ava's party the 6th of June, now. Because of everything else going on, and seeing how May 30th is during Memorial Day Weekend... ;) Keep it open!! Love you all.

UPDATE, May 4th cath date set!

Hi all! This is a photo of Miss Ava playing in boxes, and so the age old mystery of why children love boxes over the usually expensive toys that come in said boxes, continues. ;)

So as many know we heard back from the Cardiologist's office last week, but nothing was totally clear yet on what exactly was decided and why. After an extended vacation from phone calls and all consuming thoughts, we decided we needed to call back finally and hear some concise plans. So after being able to speak with the Dr. personally(we <3 Ava's Cardi!), we have learned that all involved believe it is best to first address the left pulmonary artery issue. And although Dr. Van Gundy saw narrowing in both right pulmonary arteries in the cath lab, her last lung perfusion scan taken just a couple of months ago showed that there is great flow on that side. So the focus will remain on the left side. It is also possible that by having that left pulmonary artery open, it will help with the conduit/valve leakage, though not guaranteed. So right now we are taking it one step at a time, starting with the most important.

Ava is showing no signs of fatigue or distress, at ALL. Quite the opposite, really. This girl has never been more active or crazy than now! We joke about how scary the thought is that this IS a fatigued Ava and what is she going to be like after the ballooning and how in the heck are we going to be able to keep up if we are struggling now as it is?!! ;)

Another thing I want to update loved on is the fact that Ava's THIRD(wow) Birthday is almost here and I am a busy bee starting the planning and organizing. The rain better keep itself in check this year, too! No ruining her day this year!! Invites and more info will go out later. Until then, please keep May 30th open to not only celebrate Ava's Third Birthday, but also her two open heart surgeries that both happened one week after her birth and first birthday, surgeries we will forever be grateful for, they gave us the happy, healthy little girl we know and love. :)


Ava's Birthday Invite I have Been Working On:


Her custom birthday tutu and hat(it's a tradition!) courtesy of the fabulous Kel over at Posh Party Couture:



Once I have a date set for the cath I will again update everyone. Until then, please keep the thoughts, prayers, chants and vibes a'comin her way!

Love, Ava's Mommy :)