When I Grow Up...

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...

Those Single Moments...

They're so bittersweet. It could be a smell, an article of clothing or a certain toy, a shift in the air, or a song on the radio, and all of a sudden I am right back in the middle of it all. All the hospital stays, all the uncertainty, that fear that just won't leave you alone, back to Ava being this very sick, very small baby whom we barely knew at all but loved so deeply and dearly it hurt. Right back to the memories of not only Ava being sick and in pain, but seeing her big(but still so little) brother PAINED by witnessing all of what his sissy was going through, and only being able to fully comprehend a small percentage of it.

I generally pride myself in "staying strong", "focusing on the positive", and "staying thankful for the blessings", and I am not sure anyone can fully understand what effect this has had on us, as her parents, as her siblings, etc, unless you have been there. That's not to say they don't try, though. I have a wonderful circle of friends. But sometimes, I am overwhelmed, and I ride it out. I get sad, I get scared, I get confused, I get ANGRY.

CHD is a terrible monster affecting so many of our children, and there is NOTHING we can do to prevent it, there is NO cure, our kids are helpless to this disease. It robs so many children of a "normal" childhood, it steals so many things we take for granted.

When Ava was so small and fighting to breathe on her own and to thrive and survive, we were told to expect this from now, on. That she might never have that "normal" lifestyle. She may always need oxygen/cpap, she may never eat orally because not only of her vocal chord paralysis, but all the side effects from DiGeorge and being intubated as many times as she had/has. She may never be that happy baby. We should expect a life of ER Visits, isolation at home for fear of anything even as small as a cold bug landing our daughter in the hospital hooked up to a million machines struggling to fight off the infection, continuous feeds from a machine through a tube straight to Ava's stomach, a loud CPAP breathing machine to make sure Ava doesn't have any sleep apnea or lung collapse issues, possibly never reaching many milestones, numerous weekly doctor visits, and even more therapist visits.

Ava was diagnosed at birth with multiple congenital cardiac defects, including large ASD and VSD, an Interrupted Aortic Arch, and Left Ventricular Outflow Obstruction, or as her Cardiologist says, in short HLHS. Ava has had two open heart surgeries. The original plan was three corrective surgeries.



The first surgery was a modified Norwood taking place when my daughter was exactly one week old at UCSF Children's Hospital, and was complicated by a stroke that occurred in the OR. This first surgery was about 6 hours. The above photo was taken the night before her early AM surgery. The post surgery recovery was very bumpy. Because of Ava's DiGeorge diagnosis, we were not only dealing with her heart recovery, the vocal chord paralysis, GI issues, but also severe calcium issues, etc. Ava was three weeks early, and had lung development issues, as well. The scene immediately after this first surgery is something I will never forget, though I wish I could. I couldn't even see my tiny baby, she was hidden behind machines, behind many, MANY nurses and doctors working hard to stabilize her. That first night was very rocky, and very scary. The photo below is 2 days post-op. I still can't bring myself to post photos any sooner after surgery than that...




Recovery was going somewhat well at UCSF, though what they say about 1 step forward, 3 steps back rings very true for our heart babies. Soon we were in the "step down" unit, which is where the focus is on parent's learning all they need to do before discharge and nurses are there to basically "assist" when needed.







Dad found ways to entertain himself(and numerous nurses) during those long, monotonous days at the hospital, he gave his daughter Mohawks with the hand sanitizer gel!


Soon Ava was stable enough to transfer back to UCDavis Children's. Where we spent NUMEROUS weeks. There were many reasons our stay at UCD was extended by about 2months, frankly half the reasons I still don't fully understand, the other half sort of still upset me too much to speak fairly of, so just know that there was a small handful of nurses as well as Ava's cardiologist that took amazing care of Ava while she was there, always had our backs and Ava's best interest at heart, and we are forever thankful to THEM. A few photos of Ava's UCD extended stay...












The last photo is the day Ava was finally discharged, for good! It was also my son's first day of 1st grade, a very joyful day all around!

The plan for that was to let Ava show us when she would be ready and in need of her second corrective surgery, a modified glenn, which many of the UCD staff was expecting to see us by the holidays, or within 6 months. Ava spent the next year at home. As her first birthday fastly approached, so did the signs that she was ready for stage two of the three stage repair. We were able to wait until after her birthday and her surgery was scheduled for about a week after her first birthday, or a year after her first surgery. We again made the trip out to San Francisco the Friday before her Monday Surgery for a Cath, Echo, etc. Ava was no longer a small, fragile newborn. She was now a fullfledged curious toddler and it didn't take her long to discover that if she moved that glowing foot(the pulseox) it made the machine over her head chime, which she was quite fond of and giggled over for hours...





The last photo taken after her pre-op cath.

Ava's outstanding surgeon had called us prior to our arrival and we had spoken a few times on the subject of a possible FULL REPAIR. Meaning no third stage and TWO ventricles! He answered our many questions, repeatedly, and let us know this was something he wouldn't know for certain if she was a good candidate for until he had her on the OR table. We were very nervous, but had the utmost faith in this man. Ava's second surgery was close to 9hours long, and was indeed a FULL repair. Something in the beginning of Ava's Journey that was thought to never be possible for our baby girl, had just happened. What a blessing, what a miracle! This time, when I walked back to Ava's little spot in the UCSF CICU, the hall outside her room and the room itself was not full of people in white coats and blue hats. I was able to walk right up to my daughter, and though there were numerous machines and lines, they were quiet. Ava had a single nurse that night, in fact, she had a SHARED nurse that night. Her first night after the biggest surgery of her life, probably ever, and my baby girl was the picture of stable post op patient perfection! Though seeing her immediately post op wasn't necessarily easier, doubt it ever will be.


About 3hours post-op.

Two days post-op, extubated and enjoying a little nap. :)


Always stylish. ;)

So this time around, recovery was speedy and somewhat "bump-free". There was one setback, that was the discovery that Ava was now pacer-reliant. Ava had a pacemaker placed about 10days postop(the amount of time they allow the heart to heal and see if the situation corrects itself...it did not..) We were home in about 2.5weeks. Day of discharge...




And while Ava has been and continues to be somewhat delayed in a few milestones(didn't walk until about 19months, still isn't talking much, etc), and though Ava has a bigger entourage(her doctors, teachers and therapists) than most children her age, we have so much MORE to be thankful for. Ava has always been a very happy, very LOVING baby. Those of you who have taken the time to truly know her, know what I mean. This girl could live off hugs and kisses and snuggles and smiles. We have only had one scare resulting in a middle of the night ER visit, and it turns out that actually NOT a big issue(relatively speaking, of course). Ava is never sick, and if she does catch a bug her body does an unbelievable job of fighting it off typically within 48hours(pretty impressive for being born without a thymus, eh?? ;) She is smart, very smart. The kind of smart that frightens parents and teachers alike, that smart. Ava is our little daredevil. If she trusts you, she trusts you 110%. If she gets hurt, she brushes herself off and jumps back up and tries again, with a smile on her face. If she see's a heart, hears the word "heart" or hears someone say "scar" she is instantly tracing that beautiful line down her chest and grinning from ear to ear. She knows her heart is special, and that line down her chest, it's beautiful and something to wear with pride. I hope she always has that pride...


My daughter is a fighter. A warrior. A hero. An inspiration.


Ps- for those who do not yet know, Ava's Heart Catheterization(yes, another one, hopefully the last one in this series) has been scheduled for Monday, August 31st at the UCD Cath Lab. Prayers, good thoughts, and Ava lovins, please!

Pss- If you haven't yet, please please please consider joining us for the American Heart Association's START! Heart Walk coming up quickly on Saturday, September 19th. This is our second year doing the walk, I believe we had about 35 registered walkers, my goal is BIGGER this year! If you cannot physically be there, or even if you can, and are in a position to donate, please do. The link to my personal page where you can join or donate, is below. Thank You! GO TEAM AVA! :)

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=292584&supId=222573359

Hearts of Hope

Many of you, by now, have heard me mention the support group for local families of children born with congenital heart defects, Hearts of Hope. I was only made aware of this group after I met fellow heart mommy, Michelle. She informed me of this group, linked me to their blog, for which I am super grateful. I had been trying to find a local CHD group for quite a bit of time, and the closest group I could find was in Southern California. So when Michelle informed me of this group, I was super happy and excited! HOH has monthly meetings, often with guest speakers offering valuable knowledge. Along with the monthly meetings, the group often has outings, King's games, Rivercat's, trips to the Zoo, etc, that they work hard at getting DONATED, so all families in the group have a chance to experience these things with their children, as well as allow their children to befriend kids *just like them*.

Since then, which was probably less than a year ago, Michelle and I have been asked to become the coordinators for the Hearts of Hope Care Package Program. Michelle and I were very honored and eager to get started on this program and become a part of something so amazing. The care packages go out to heart families facing a new diagnosis, hospitalizations, surgeries, or having difficulties following surgeries/procedures. Michelle and I have put on our thinking caps and brainstormed a few ideas that we hope will make these packages even more valuable and useful to the families in need, and thanks to some extremely generous donations and hard work of the group, many of these ideas are happening!



Right now our packages consist of:

* Logo tote bags
* Aluminum water bottles
* Note pad and pen
* Tissues
* Various toiletries
* Beanie babies
* Blankets
* Healthy and energizing snacks for the parents/siblings

An ongoing list of needs for our care packages to succeed and continue:

* toiletries (ie -individual toothbrushes(adult and child sizes), travel size toothpaste, shampoo/conditioner, body wash, hand sanitizer, disposable razors, scrubby puffs, brush/comb, etc
* puzzle books(crossword, word search, sudoku, etc)
* disposable cameras
* non-perishable, healthy, single serving snacks
* phone, gas, grocery store gift cards

If you have any further ideas for these packages, we are open to suggestions, especially if you are a parent facing such hospitalizations. If you would like to donate, join the group, or become involved in any way, please visit the group page(which clicking on the title of this entry will take you to) or contact me directly.

Thank you!

Heart hugs,
Jen Bolima

Monday's Jelly Belly Factory Fun!

I can't really think of a better way to start the week. A mini trip out to the Jelly Belly Factory in Fairfield with family and friends. In attendance were Uncle Joe(my brother), Auntie Brie(my bff), her two kiddos Lucas and Logan, Brie's sis Kacey, as well as Auntie Tiffany(my bff)and her super sweet and cute twinsies, Alexis and Aleasha.

We did the free tour, that place smells SO GOOD. They were making bubble gum Jelly Bellys that day, which I am typically not a fan of one bit, but my GOSH that smell, it was intoxicating. :) We all donned our super stylish white paper hats, learned and saw how Jelly Bellys were made, and heard more than we ever necessarily wanted to know about Ronald Reagan's Jelly Belly infatuation. :) It was fun, and informative.

After the tour we roamed the gift shop, bad idea. Who knew a family of four could easily spend almost $40 on Jelly Belly's in a matter of minutes. Okay, we actually didn't buy many Jelly Bellys themselves, as we OTHER yummy confectionery goodness. :)

Our plan was to eat at the Jelly Belly Cafe, but the choices are somewhat limited as was the seating, so we(minus Brie's clan, potty accidents will happen...)all decided on Chili's in Vacaville(NO, hubby didn't even let me stop at the outlets, pretty rude huh?! But in all reality it wouldn't of been much fun for the kiddos, and it was their day...I guess...), which was super yummy. Not a place we frequent often but it's very kid and budget-friendly, plus the quesadilla I ordered was insanely delicious! :)

Then once were home and utterly exhausted, brother came over, we ordered some pizza and the boys all played wii until about midnight. FUN day. Ava was in bed early, it was a super long and eventful day for her, she had fun but you could tell it took it's toll, poor mamas. But I do believe these kids who aren't all that used to sugar and went candy-bananas yesterday(how do you justify a trip to a candy factory and NOT?)have some serious cases of sugar hangovers! It was a fun day, here are some photos from the day...



Tiff and Ava, at the Factory in front of all the CHOCOLATEEEEE.

Us in the car, you can only see G because his head is huge. ;)

My buddy and me.

G donning his super cool hat.


Ava donning hers.


Uncle Joe laughing at Ava's pirate face. Arrgh!


Tiffers and her twinsies.


Most of the kiddos(sad we didn't get any of Brie's clan!)


Uncle Joe and Miss Ava, looking very happy about those hats,probably my favorite shot of the day! :)

Guess What?!

In case you haven't heard yet, the Catheterization scheduled for Monday, July 20, was canceled. Ava has been sick for about a week now and had this terrible cough over the weekend. So we took her to the Dr. on Monday and she was found to have a double ear infection, yup, BOTH ears are infected, at the same time. She wasn't showing any outward symptoms of an ear infection prior. Silly girl. So we told her Cardiologist and he didn't want to touch her until she has a clean bill of health. Understandably. Him and I were definitely on the same page with this one, as usual.

So the gals at the office are working on a August 31 date. First case, on a Monday, just the way we like our UCD Cath Lab visits. ;) Let's just hope UCD doesn't decide to double book that time slot again...We are currently waiting to hear the official OK from UCD, and that can take up to a week sometimes. If there is a change in date, I will update on here.

Other than that, everything is going well. Ava is on amoxicillin and is feeling the side effects...I won't bother elaborating. ;) She's only now tugging on her ears. But other than that, she's fine. Her last day of school was Wednesday of this week, but she had to miss it due to her illness(still has a really bad sounding cough and a runny nose). When we called into the office to clear her absence, they informed us that Ava was going to be given an award that day, but that they will forward it on to her home school for the fall school session. Must. Make. It. To. Fall....This mama is SO ready for BACK TO SCHOOL!

Ava's latest and greatest:
* bigger appetite, seems to grow daily, WOOHOO!
* thumbs up, saying aww-emmm!(awesome!)
* two new molars
* the "disco roll" YES, it's a disco dance. Think John Travolta in Staying Alive...It's hilarious!
* new favorite word...NO. Go figure.
* mastering the somersault. GO AVA, GYM DIVA!
* fish status. Ava finally LOVES the water and pool!
* lots more sounds/words. Very exciting!


Hope this finds everyone happy, healthy and enjoying Summer!
Always,
Ava's Mommy

4th of July Fun!

So though my dearest hubby had to work the first 4th of July that I ever can recall, we all still got in some family time before he had to depart(graveyard late shift). He was definitely missed, though. :(

We spent the late afternoon/rest of the day at my parent's house, as we do almost every year, it's become a tradition. Family, BBQ, swimming, lots of fun. This year was the most low key it's ever been(just myself, my kiddos, my parents, and my brother) but it was actually really nice. We could all hear each other, had a place to sit, and didn't run out of mojitos. ;)

We used to be able to view the fireworks show Carmichael/Fair Oaks put on from my parent's front lawn when they held the show at Del Campo Park, and the walk was a super short distance if you felt the need to be "in the middle of it all." But a few years ago they moved the Fireworks Show to La Sierra, which is still right down the street, but basically impossible to see from the house. So my dad in previous years has taken it upon himself to provide the entire block a great show with enough fireworks to last a few hours. No joke. This year he had help, though. Thanks to a lovely person I have met through Ava's journey, a fellow Heart Mommy and amazing advocate, as well as half of the fabulous team that fronts the support group, Hearts Of Hope, and her equally generous friends, our family as well as a fellow heart family, were given a tour of the TNT warehouse and gifted two boxes of fireworks as well as tee shirts, hats, pins, etc! There are truly some amazing and inspiring people out there and I could never give proper thanks for the thoughtfulness and generosity they are spreading to heart families. Thank you Valerie, Thank you to everyone at TNT Fireworks, from the Bolima Family. :)

I hope everyone had a fabulous, fun and safe Fourth!

On a side note, a very VERY sleepy and sometimes sensory sensitive mini diva was not having those loud booms last night, as a result she and I spent most of the time indoors or covered under a blanket. I did manage to sneak a few cute photos, though. I am also including a couple from our trip out to the TNT warehouse...


















Love always,
Ava's Mommy

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,