Tuesday, September 21, 2010

Tummy Surgery

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!

Monday, September 13, 2010

Children's Miracle Network/UC Davis Children's Hospital Kid's Day at the Capital Air Show!

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?


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!

Thursday, September 9, 2010

Little Worries

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! ;)

Thursday, August 26, 2010

The Yucky "S" word...

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!

Wednesday, August 25, 2010

Every Heart Has A Story...

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...

Every Heart Has a Story

First Day of School!

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. ;)

Tuesday, August 24, 2010

Sacramento American Heart Association START Heart Walk

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

Thursday, July 22, 2010

Ava's cousin Torie visits from Ohio!

...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

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. :)

Thursday, July 15, 2010

Document Everything

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. :)