Thursday, August 27, 2009

Pre-Cath Bubble!

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!

Monday, August 24, 2009

Ava's First Day of Preschool

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... :)

Monday, August 10, 2009

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...

Wednesday, August 5, 2009

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 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! :)