National Heart Month

Every year since 1964 American Presidents have declared February as National Heart Month. Sunday, President Barack Obama reiterated this tradition asking Governors of the States, the Commonwealth of Puerto Rico, officials of other areas subject to the jurisdiction of the United States, and the American people to join him in recognizing and reaffirming our commitment to fighting cardiovascular disease.

Read the official press release from the White House

Our 9th Anniversary

Paul and I married 9 years ago today on February 2, 2002 at the ripe ages of 19 and 20. We have been through an insane 9 years, most of that insanity in the last 2 years! But because of all we have survived and experienced together, we are stronger than ever. Our relationship is set apart from the average marriage, and I am thankful for that. He is a wonderful father, a loving husband and a loyal friend. I love you Pauly...

Cries of a little girl... Why God?

We have given quite a few updates and prayer praises over the last almost 2 years on our sweet friend, Kate. While she is not a CHD or heart kiddo, she is close to our hearts just the same. We go to church with this precious family, and Gabriella has had a deep and spiritual bond with Kate even long before they met. Kate's story can be found on her Caringbridge site, which I will post below.

Kate had a follow-up scan today to see the status of her brain tumor, to find horrifying news. There are new spots on her brain, and things have gone from calm to critical in one day. Please read her update on February 1 at 5pm http://www.caringbridge.org/visit/mcraekate

I ask that you be in fervent prayer for Kate McRae and her family as they potentially face more struggles. I can only place this news in proportion to Gabriella, and to hear that she was in heart failure again and faced another heart transplant would absolutely tear me apart. Holly and Aaron, her parents, need all of the strengthening prayers you can send as they push through more trials with their precious princess. And please be in prayer for Kate, who cried "Why daddy, why? Why hasn't Jesus healed me?" this afternoon. May Gods peace and comfort cover this little one who has known more than she should have to.

Little news is good news

It has been increasingly difficult to blog lately. We cut internet out of our budget in our belt tightening efforts last fall, and I use an app on my phone to Tether my connection. The problem is it is a VERY unreliable internet connection and also a pain in the booty to use! I have tried blogging from my phone, but they are no longer delivering! We are hoping soon to reintegrate internet into our budget for a multitude of reasons, so here is to blogging more!

Gabriella has been doing amazing. We have been going complete months without visits to Cardiology. We are still having issues getting her immunosupression medications balanced because she is metabolizing them in an unpredictable manner. Plus, she is growing. Right now her levels are very low, meaning she is not as protected as she needs to be to prevent rejection, so we are working on new dosages. Her magnesium deficiency is finally controlled though! The keloids on her scar have started to fade and she proudly shows everyone her scar, still.

After working on it for months and months, Gabriella started homebound education, speech and occupational therapy this week! This adds 7 hours to our previous homeschool schedule, outpatient therapies with Miss Lisa and any other doctors appointments we may have. The need for me to stay home continues, and I am gladly obliging. Though it is difficult at times, I couldn't imagine going to work and leaving it up to others to tend to Gabriella's needs. I hope to be able to eventually integrate some part time weekend work into the situation to help us get out of this extreme financial emergency we have been living for a while, but until then, we continue to remain faithful and thankful to God for providing!

Gabriella's speech has been out of this world. Her sentences are becoming more complete and clear, her retrieval and execution of words is without effort and her ability to retain information has expanded to new levels. We couldn't be more proud of her and her progress. With all of the schooling evaluations lately, we have been told continuously how smart she is and how she is right on track for Kindergarten! This is such a blessing seeing her at this level when just a year ago she she was nowhere near this. She even has the typical 6 year old answer to "what did you learn today?" and says "I dunno". :)

On that note, we are moving, again. It seems to be a clockwork announcement on this blog, as this will be our 5th move in 2 years! Though I was hoping this announcement would come stating that we were relocating back to our beloved California, we are staying in Arizona. January 2009 we did a short sale on our rural home of 7 years and moved into town to a lovely rental. Gabriella was diagnosed that summer and we moved September 2009 in with my mom to prepare for transplant. We then moved in April 2010 to our apartment, since we were kept off of the transplant list longer than we hoped due to Gabriella's stroke and I couldn't live with my amazing mom forever. Five weeks later in May 2010 we moved to Loma Linda for transplant and returned to Arizona September 2010 to the same apartment. The apartment we moved into is a lovely little 2 bedroom apartment. It has been an affordable option for us, and a safe shelter when we needed it. Knowing our lease renewal was quickly approaching, I decided to see what was out there since our rent was increasing. Though our apartment is great, with 2 kids sharing a room who are still very into toys and a momma who could occupy a 1000sf location in my sewing and crafting alone, we are bumping elbows frequently and triple using spaces like our little $20 Ikea table for dinner, sewing and schoolwork. One little comment on Facebook and the BIG hand of God, a lovely friend let us know that she coincidentally got a call from her tenant right after I posted my status that he needed to move and downsize and her place would be available. Three bedrooms, 2 bathrooms, garage and 300sf more space for the same exact price as our apartment is increasing to. If that wasn't fate and Gods divine plan, I don't know what it was! Between ourselves and the homeowner, we are going to fix this place up super nice and get all settled in this spring! We are excited to move into a place that seems to be longer term, since our moving around has always been for short commitments and an unsettled view of the future. Of course, as sure as I say that, God will remind me that His plan is bigger than mine.... lol.

Not too sure when we will head back to Loma Linda. We technically were to return in early February for genetics follow-up but due to financial constraints that probably won't happen. We would love to go back for her 1 year biopsy which is quite routine, but I feel slightly torn. I would love for her heart hospital to do it, as we feel we are still very much part of the heart family there. Our insurance company also expects for us to go and do it there, as they are the surgical hospital associated with her transplant. But then we have our team of doctors here that can do it, and I worry about them thinking that us going is a sign of lacking trust, though it is not. We just have a special connection to Loma Linda, and feel it would be continuing what we began there with our transplant team. We will see what comes of it... but wherever we do it I am just praying for a big fat ZERO rejection!!!!!

Finally, Gabriella's Make-a-Wish is recharging as we speak and we are hoping to soon have our wish granters visit and receive Gabriella's wish (again). Since we went through the process in August 2009 but could not go on the trip due to Gabriella's sudden stroke, we must redo everything! Gabriella's wish has slightly changed as well! Can't wait to share all the details of this with all of you!!!!!!

A Blessed Birthday

I love her 5th birhtday post so much that I will add it here with a continuation.....

Oh, my dear Gabriella. How you have grown.....

So tiny, so fair. January 14, 2005 at 957am you blessed our lives and the lives of so many. We had no clue when you came into the world that morning what a difficult journey you would live so young, and what an impact you would make on so many people.

From early on, you have always been so observant and so intelligent. You absorbed your surroundings, paid mind to the small details and observed to learn. You were my little doll and my best friend.

Your independence and spunk have been your well known traits! Strong minded and diva-ish, if you will. But the sweet and loving, super sensitive side of you is never far from the surface.

As you grow and mature, I am overwhelmed with pride. You are becoming an even more amazing little girl. Even when you test your limits, I wouldn't change that for the world. You will succeed and shine bright because you make yourself known.

You have endured and prevailed through so many things in your life so far. Things most people will never have to face. You are my hero. You are a hero to many.

Yes, you made me a mother and have blessed my life, but you have also changed me. I could never return the blessing to you that you have been to me.

I love you, my 'Princess'. My 'MommaGirl'. My 'Little'. Though we didn't know last year if God would give you us to celebrate your 6th, we had faith you would be here for decades to come. Today we celebrate another year given, another day lived and another moment treasured!

2010 Year in Review

January

Gabriella turns 5!

Gabriella's HeartSong fundraiser is a success

February

Paul & I celebrated 8 years of marriage

Gabriella's heart function declines

MRI shows Gabriella's brain clot is dissolved

Gabriella is listed on the UNOS waiting list for a heart

We make an ER trip for Gabriella

March

Gabriella & I spend 10 days on a girls trip in California

April

We move into our own place after living with Mom

Kristi turns 28!

Our friend Mason gets his heart

We get a false call on a donor heart

The month was full of organ donation blogs

We fly to Loma Linda for clinic to find they want more testing on her failing heart

May

GABRIELLA GETS HER HEART!

June

We meet precious Mathilda and her family

Gabriella progresses and GROWS

July

Quiet month of California fun

Biopsy shows NO rejection

August

We start homeschool

Gabriella gets CMV and is hospitalized

September

PJ turns 3!

Paul turns 29!

Our dog Minnie joins the family

We speak at Restoration Covenant on Finding Peace in the Storm

We remember, 1 year post stroke

We return to Arizona from transplant recovery

Gabriella makes local TV

October

Gabriella looses her first tooth

November

We represent all Arizona families at the Ronald McDonald House McNight to Remember

We make 5th place in fundraising for our Heart Walk

A long weekend in California for appointments, but kidneys work great!

Gabriella meets Kat Von D!

December

Annual Heart Family Christmas party

I won a contest for inches lost over the holidays

I get my wisdom teeth pulled

God provides financially for another Christmas miracle

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Cardinals vs Cowboys

We were given a rare opportunity to attend the Christmas day football game of the Arizona Cardinals vs the Dallas Cowboys. Make a Wish sent out an email just days before the game stating that Larry Fitzgerald had given a suite to Make a Wish for them to pass along to a few wish families. They were offering us 4 tickets to sit in this suite and enjoy the game, and we accepted!!! Larry recently completed a wish for them so was wanting to give more to the organization. Not to mention, he donated a few items to Gabriella's spaghetti dinner in May 2009 to be auctioned off. This man has a giant heart, and not in a heart defect kind of way. ;) He is kind, generous and caring... using his fame to give back. We had the opportunity to sit in the suite next to his friends and family, meeting his son who was a DOLL and assistant who was such a sweet and loving lady. Larry arranged for some cheerleaders and Big Red, the mascot, to come visit, and provided us with an excellent array of food!

We thank you, Larry Fitzgerald and Make a Wish, for giving us this opportunity. We had an amazing time that will remain a memory for years to come!

Christmas Celebrations

From Christmas with Us

Christmas is always very busy for us. We try and do as many activities as possible in the weeks leading to Christmas, but this year was just not as successful as years past!

We did manage to make it to Santa's mailbox at Macy's and drop our letters to Santa! Every letter sent equals a $1 donation to Make a Wish, and we will always do anything possible to support them!!!

From December

From December

From December

From December

On Christmas eve, we used the day to not just bake and prepare for the festivities, but to also spend some time together at the movies! We haven't seen a movie together, the 4 of us, since March when Alice in Wonderland came out. We saw TRON and LOVED it!!! A Must see in the theater!!!!

From December

How cute is my little man?

From December

After the movie, we went home where I somehow was able to bake brownies, cookies, make pasta salad and prepare for church. We attended service at Cornerstone Christian and it was absolutely fantastic! Brian and Ryan knocked it out for worship and Pastor Linn yet again gave us another amazing visual demonstration on Christian living. Christmas eve we always spend with Paul's family, so after church headed out. Keep in mind, I was 2 days post oral-surgery so I was hating life as I stood in a kitchen of sweets, menudo, tamales, ham, and sides galore. I managed to mush up some masa from a tamale and suck on a brownie.... good times! We had a 38 person white elephant which marks as our biggest yet, and LONGEST! The kids ripped into presents at around 11p, and let me tell you there was no shortage of gifts for the little ones! We must stop multiplying in the Vega family or we will have to rent our a venue for Christmas Eve!

Christmas Day we woke up and did presents from us and Santa. It was a skinny Christmas, but we individually wrapped every little item to give them stuff to rip into! We managed to find PJ an amazing deal on a new bike, which was a total hit! Thankfully Gabriella's BIG want was the Tangled rag doll which was low in price. We were blessed to see that despite the struggle it took to get them presents, they loved them all just as much as they would have if we spent $1000! We know it is not about the presents, and we teach the kids that. They know we are celebrating because of Jesus's birthday... but you have to be realistic. They are little and presents are exciting and magical and while they are not what it is about, there is something spiritual in the giving and receiving process of it all.

We headed out to my sisters in the afternoon for snacks and presents. The kids were yet again spoiled by my family as well! The best thing was how grateful they were for every little thing. The smiles and excitement was prime. Having a 6 and 3 year old is absolutely perfect for the spirit of Christmas!

Here is the album of Christmas pictures with our families. Notice the plethora of Disney items... I am sure you are no surprised. :)



And the album of our Christmas with our little 4some! Some great shots of the kids excitement!!!!

Merry Christmas 2010.... delayed

I wrote this blog from my phone on Christmas Eve & finished it Christmas Day. I sent it to the blog and deleted my outbox, only to find it never posted on this website! I was crushed! 3 days later, I received a fail notice with my text... So here was my Christmas post just a few days delayed!



And I thought I've seen miracles this year....

We have witnessed Gods blessings firsthand in numerous ways in 2010. From the generous hearts of people who lent a hand physically or financially to those who flooded the gates of heaven with prayers for Gabriella. From the staff at all of Gabriellas treatment locations & their amazing dedication to children to the selfless sacrifice the parents of precious Abbie made in May. We have seen so many children fight, survive, or be healed in the Holy Spirit in just 12 fast months. I look back and cannot believe my eyes at the miracles we have witnessed.

Christmas lends a whole new perspective to miracles though... One I hadn't focused enough on over the course of the year. Of course, that is what Christmas is for. An annual reminder of what we should be thinking of more frequently. The fact that our Savior came in the most innocent & raw form, a baby. That very Savior that permits daily miracles, redeems us from our own sins and selfish desires and saved not only the world but generations until eternity.

I couldn't even fathom what it was like to live in that time Jesus was born. The turmoil & struggle that surrounded his birth. His life as a human and all he accomplished and endured, yet even though he was there in the flesh, people denied who he was. God sent his son in a form that could tangibly reach the people on earth, to teach them what they might not have learned had he not been alive & human. How easy it could have been for God to show his might by a supernatural blast of light or descending as a spirit. Instead, he found a way to reach us personally in a way we could grasp. And even to this day, some deny the fact that he existed as a man, or that He exists at all. But, my friends, He was and is very real. From dependent infant to selfless man to a spirit risen again.

In that same way Jesus performed miracles so many years ago, but on a much smaller scale, God held our hands this year through the struggle but gave us tangible ways to remember that He was there. For every moment I could tell you that I felt despair or sadness or struggle, I have a praise to share that shows where God was at that same moment. All of that possible because of the life of Jesus!!

There is no better day than today, the day we remember the simple birth of our living Savior, to reflect on how the birth of a little baby saved each and every one of us personally. What a mighty God we serve!!!

You're Here

Amazing song... A perfect one for Christmas!!! Please listen!

http://www.youtube.com/watch?v=v8Um74Jt9U8

You're Here
by Francesca Battistelli
Hold on now, I gotta take a deep breath
I don’t know what to say when I look in your eyes
You made the world before I was born
Here I am holding You in my arms tonight
Noel, Noel, Jesus our Emmanuel

You’re here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left us on our own, but You’re here


Don’t know how long I’m gonna have You for
But I’ll be watching when You change the world
Look at Your hands, they’re still so small
Someday You’re gonna stretch them out and save us all
Noel, Noel, God with us Emmanuel

You’re here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left us on our own, but you’re here… you’re here


Someday I’m gonna look back on this
The night that God became a baby boy
Someday You're gonna go home again,
But You leave your spirit and flood the world with joy

You’ll be here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left me on my own, but you’re here… You’re here
Hallelujah… You’re here… Hallelujah... You’re here

God provides....

On November 1, I entered a contest against others to see who could keep on track and loose the most inches over the holiday season. It was a $15 entry fee.... and I had already lost 5inches in the 11 days before the contest started.

Fast forward to last night, were I was ending day 10 of excruciating tooth pain in my lower left wisdom tooth. I could tell it was infected and I was in terrible pain. I called the dentist this morning (which was HUGE because I am deathly afraid of the dentist) and they got me in right away. All I could think about was how I dehydrated yesterday to loose water weight and weigh in today for the contest! I went in where the dentist said my tooth was severely infected and the infection was in my gum and throat. He said he had time in the schedule and wanted to remove all 4 wisdom teeth right away. After learning they do not take payments, I started to realize it was not happening today. I am sure the $6 in my checking account was not enough to cover. The girl came back and said that she would run some tomorrow and the balance in 4 weeks, which was still going to be terribly hard, but doable. So I agreed to the surgery and they got me started within 20 minutes. Full sedation to remove 3 wisdom teeth that had broken through and drill out one that was not out yet but angled into my next tooth, but at least my phobia was put to sleep. I woke up crying and a mess, most likely because I was so scared that I fell asleep in the same manner. The last thing I remembered was telling the nurse about my babies... what a lovely thing to be thinking of as I drifted off.

Paul got me home and headed out for the 'good meds'. The pain was too much to rest, so I managed so sit quietly and get some light things done. When he got home, I was feverishly watching the clock to go in and get measured, despite the dehydration from the day before was ruined due to the IV fluids I was given.

I measured in at 15.75inches down from the start of the contest. The girl who was in the lead thus far had lost 12inches. I left, but was staring at my phone to wait for the results. She calls me and tells me that I won! Another woman measured in at the same loss, but she said it was not important to get the money and she wanted me to have it! Selfless act of kindness to help someone who needs it.... exactly what this time of year is about.

Between my winnings from the contest and a little income I made on the side today, my dental work will be covered! I am blessed. Gods timing is perfect, and the heart of the people who have touched us reflect Gods pure and selfless love.

The cutest thing is how worried about me Gabriella was. She has a heart of compassion after all she has been through. She was "nervous" that her mommy had surgery. How precious.....

Heart Family Christmas Party 2010

Last year, we attended the annual Heart Family party and HAD to go back again this year. My post last year can be found here: http://listeningthruthenoise.blogspot.com/2009/12/heart-family-christmas-party.html

It was just as wonderful this year as before! The added perk was I recognized people and they recognized us... having read my blog and kept up on Gabriella. It was a lovely time, and I cannot sum it up any better than I did last year, so I will copy what I wrote....

"The best part of the whole party for me though was being around families that have struggled in one way or another the same way we have..... and will. It was nice to not feel like such an exception to the rule- normal American family: one dad, one mom, a boy and a girl, dog and house. We used to be that less than a year ago, but are no longer. I was surrounded by little ones and teens with large scars on their chest, developmental delays or disabilities, feeding tubes or oxygen.... and you know what? It was like watching an elite group of the most amazing kids God ever created. All just as deserving of the snow and Santa and junk food as any other kid, but able to have it in an event given especially for their amazing little hearts."

Enjoy our pictures!

From Heart Party 2010

From Heart Party 2010

From Heart Party 2010

From Heart Party 2010

From Heart Party 2010

The whole album can be seen here:

Heart Party 2010

Build-a-Mad Monkey?

Our loving friends at Ronald McDonald House gave the kids a gift card to Build-a-Bear as a thank you for attending the McNight Gala and speaking. Combined with a gift card a very sweet friend sent us before Gabriella's stroke, and we made an evening out of it! We went on Black Friday to build our bears. Gabriella picked the very girly Clairice, and PJ picked the abominable snowman. The funniest thing though, PJ rode Matterhorn for the first time this summer and when he got off he said "I saw the mad monkey!". Now, the abominable snowman has been renamed.... and his Mad Monkey build-a-bear was born.... in Star Wars pajamas nonetheless!

From Build-a-Bear

The full album can be found here:

Build-a-Bear

Recent Random Photos

I always have pictures that end up in my 'random' category! Not quite tied to an event, but still worth posting! Here are some of those pictures!

My gorgeous newest niece...

From November

From November

My boy, who cooks in style....

From November

When we were in Loma Linda for testing, we met up with our favorite Cheri's! Cheri the transplant coordinator who has become like family to us, and Cheri, the mom of Logan, our neighbors in long term housing. He received his heart about 6 weeks after Gabriella!

From November

Miracles.....

From November

My great-nephew! Don't you want to pinch him?!

From November

The crazy guy who married me...

From December

From December

From December

Our little Minnie Mouse...

From December

From December

Save the Arizona 98

I don't get political or controversial on my blog because I do have a great respect for individuality and opinion, but this is strongly related to our lives and passion for organ donation.

Recent decisions and cuts in Arizona within the state medical coverage system and transplant coverage have crushed nearly 100 people's future and hope for survival, as well as countless lives in the future. Many people do not know this is happening, so I thought I would share it here. We were very fortunate to have group insurance through my husband's employer, but I could only imagine the despair the people who are covered under state insurance are in knowing they or their children will not be given that chance of life.

Our 'Governor' Jan Brewer implies in the video below that the success rate of transplants, specifically bone marrow, is too low for it to be a covered service. Not only is she ignoring the humanity aspect of this situation, but she has her numbers/"facts" wrong. Let me tell you, it is hard enough to have the doctors tell you that you might die waiting for your organ, or that your lifespan post transplant will be short, but to have your insurance decide for you that you will not even be given a chance because those odds are low is a blow as a citizen and human.

I personally like the transplant survivor in this video who said the inmates are treated better than the honest citizens of the state. Unfortunately, that is the direction Arizona is moving. And yet another reason for me to add to my list of why I am sickened by how this state is ran and why I would love to leave.

God be with Jan Brewer. To her this is a population control, financial balance, lower-than-upper-class issue. To the ones left in limbo, this is life or death.

(and may I urge you to follow Bob Aronson on Twitter. He has started this battle to Save the Arizona 98 and I support him all the way!)