CHD Awareness Week

I have this pretty awesome friend. We haven't hung out a lot, we haven't talked a lot, but we share a lot when we can and have a very common denominator. She posted a poem today that I MUST share! Thanks, Owens Momma!

This week is Congenital Heart Defect Awareness Week, as well as Heart Disease and Stroke Awareness Month!

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

Gabriella is CLEAR for listing!

The neurologist just called me after a long, stressful weekend of waiting! He admitted he forgot she had her MRI Friday and apologized for not getting me the report the same day (like originally planned). Regardless of the waiting and issues I had getting that call back from him......

GABRIELLA'S CLOT IS GONE!

PRAISE GOD! Her scan looked great! The area has 'recannulaized'. He said the blood flow has been restored to the area and the clot is gone! The damage done to the surrounding areas is irreversible but to know the cause of the issue is completely gone is TOTALLY God! And to know she is safe for bypass and transplant is invaluable news! Gabriella is most excited that her Lovenox shots are all done and she only has to chew a baby aspirin!

I barely had the call disconnected before I dialed Loma Linda. I am waiting now to hear back from them if we can go this Thursday to clinic and get her listed then or if we are too late for this week and have to go next Thursday. They will evaluate her and get her listed! EEEK!

Thank you to everyone, who from September 25th until today had their prayers on Gabriella. Those deep and heartfelt cries to God to take the clot and destroy it worked! And to know that those prayers will now be on her new heart and the surgery it entails makes me so excited to see God work again in that area!

Bling bling!

The Lia Sophia fundraiser previously posted on our blog and supportgabriellasheart.blogspot.com will be closing Tuesday!

Be sure to take advantage of the buy 2 or more items at regular price, get 2 or more expensive items half off! All items ship direct to you.

I love the Lia Sophia pieces I own and it is such a great jewelry line. Rodium jewelry that won't tarnish and lifetime warranty for any damage to the piece!

Check out the previous post for ordering details. 50% of all the proceeds go directly to Gabriellas Heart Fund!

MRI is done!

Whew, what a relief! It feels so good to have this past us!

We got up early and went to Phoenix Childrens for Gabriella's MRI. We got registered and taken back quickly to MRI waiting. The anesthesiologist came in and went over Gabriellas history with us. She told us about her approach to putting Gabriella under this time, since she was so unstable in September. By the look of shock on my face, she asked me if I even know what happened in September. She proceeded to tell me that putting Gabriella under when she had her stroke was risky, and her heart was extremely unstable during the MRI. She hit a critical point under anesthesia and she needed to prepare for that today. She decided to only put the gas on Gabriella briefly and only do what meds were absolutely necessary. So I went in with Gabriella, and she was such a big girl. She laid on the table willingly. She was scared and crying but knew this was something we had to do. They put the gas on her and it took her about a minute to calm, and they kicked me out. About 45minutes later, they called us back. We could hear Gabriella crying from the hallway. When we got in, they let me hold her. They told me that she was doing well with the gas and her heart remained stable, so they only did minimal IV meds to keep her under. The downfall to this type of anesthesia is it causes the kids to wake up quickly afterwards and VERY agitated. Gabriella cried for a good 25 minutes before we got her to calm down. She started coming around and she drank some water, and before we knew it we were being discharged!

She has been home and relaxing all afternoon now. She's eaten a PBJ sandwich, sausage, cereal and chicken nuggets. I swear, that girl can put DOWN some food nowadays!!! Positive part of the type of anesthesia they did is she isn't sick!

My work has started though. I have called the cardiologist directly, his nurse, and the Neurologists nurse. I am about to start my second round of phone calls right now before close of business. We NEED these results and the authorization for transplant SOON! Once we get that, we can head to Loma Linda for clinic and that's IT! She'll be listed!!!!!!!

If you can pray specifically for the MRI results being clear and the process being quick, because Gabriella's heart cannot wait forever.

I was reading some links from Twitter and found a GREAT write up on kids with RCM. I have read a lot of restrictive cardiomyopathy reports, but rarely do you see them for kids. Probably because it happens in less that 1 per million children. There's not a lot of information. But if you want a refreshed on Gabriella's condition, here is the link:
http://www.heart.org/downloadable/heart/1181919434962Restrictive%20Cardiomyopathy_2007.pdf

Ronald McDonald House

When we stayed at the Ronald McDonald House for Gabriella's stroke, it was amazing what just a short time spent there could do. I went over there for an hour daily to shower and refresh, and occasionally spent a little extra time if PJ was brought up to us there. Their playground was a fun place for him to get rid of some energy while blowing bubbles or hitting a beach ball with me. The room was comfortable and calm, unlike the inside of the hospital walls. Having a place to take a warm and quiet shower was like winning the lottery. The big comfy couches in the living room gave us 5 minutes of normalcy, sitting in more than a hard recliner sleeper. The computers allowed me to quickly reply to and check on the support Gabriella was shown without interruption. The dining room gave a place for those hot meals brought in by volunteers nightly to be enjoyed and we were able to meet other parents with little ones fighting various battles over food. And the kitchen was always my favorite last stop to grab something on the go before running back to my daughter.

The Ronald McDonald House was always a great place to me when I would hear about it here and there. But until I experienced it, I could never have fully appreciated what it offered. Our stay at the RMH Phoenix Childrens was merely a preview of the blessing they are, since we will be staying at the House in Loma Linda for months come transplant time.

Tomorrow Gabriella has her MRI at Phoenix Childrens. Everytime we head to Phoenix for an appointment or test, I try and make it a priority to put something together to take to the Ronald McDonald House on campus that so blessed us in September and October. Because of how much we appreciate what they offered to our family, we want to help do our part in giving back what we can right now. We want to help more in the future by making monthly meals and volunteering in whatever way we can. For now, we take different foods and essentials to the house. There were a couple days when we stayed there that quick snacks or fast meals were in short supply and there was not much to eat. I keep that in mind when grocery shopping and packing a box. Do you know how cheap you can get some things like boxes of macaroni and cheese or crackers? Or how valuable those free samples or travel sized shampoos and lotions from a hotel are? And do you know how much those simple items mean to a family at the RMHC? I'll tell you, it means the world.

I encourage you to clean out your pantry's. Are there canned fruits you haven't opened yet and don't have plans for? Do you have way too many boxes of Ritz? Do you have a plethora of travel sized items you took from those last 4 hotel stays? Consider taking them to your local RMHC.

You can find a complete list of foods, personal items, household items, games, etc and a link to search your local chapter here: RMHC NEEDS They will give you a donation receipt, and it's a great lesson in charity too for kids. My kids totally understand that mommies and daddies stay at this special house when their babies are sick in the hospital, so we take them things they need. And if you live in Arizona and want to bring them to me, just email me or comment here I will make a special trip with all your donations!

Thanks, Gabriella's friends!

Jewels for Gabriella

(reposting! the original link was not working correctly. Thanks!)

Please visit http://supportgabriellasheart.blogspot.com/ for very important information on a very special fundraiser!

Posting this message on behalf of Laurie Nelson and Michelle McCrea.... thank
you, lovely ladies!

In Honor of the Vega family we are having a "Jewels for Gabriella" fundraiser on February 6, 2010 featuring Lia Sophia Jewelry at the home of the McCrea's at 584 S Golden Key Street Gilbert, AZ 85233. We are asking you to come and support this very special family by purchasing jewelry. Our special will be, buy 2 or more items at regular price get an equal number of items at HALF price! Make your highest-price selections your HALF-price items! There is no limit. (Lia Sophia jewelry has a lifetime Replacement Guarantee.)

If you are unable to attend and want to help Gabriella, please visit www.liasophia.com/laurienelson (orders can be placed beginning February 1!)

Follow these steps to place an order
Step 1 click on "Our Jewelry"
Step 2 click on "Spring/Summer 2010"
Step 3 click on How to purchase
Step 4 Hostess Name – Michelle Mc Crea
Step 5 Place your order.

Thank you in advance from all of us.

It was inevitable...

We have been so lucky with Gabriella's health. Well, lucky isn't quite the right word. Moreso we have been given mercy. God has truly protected Gabriella over the past nearly 11 months since we first discovered there was something wrong. Her ECHO's have been stable, remaining comparable to the one prior since last summer. All the way up until January when she had her last one.

This morning we went to our monthly (very early) cardiology visit. They did her EKG and ECHO like normal. Dr. Alhadheri came in like usual to talk with us. He said Gabriella's 24 hour montitor she wore last month came back stable, and showed no real issues to worry about. He complimented her weight gain, which at 45" tall she is now 43lbs! Dr. A, with urgency and concern, said he doesn't want to drag any more heels. I discussed my fears over the urgency, or lack of, on the end of neurology. He ensured he would do his part in keeping up on this all. He even said he would call Gabriella's neurologist today and remind him of the critical nature of the MRI results and status for listing. He also told me to text him Friday after her MRI to let him know it was done so he can persue the results and get them to Loma Linda for us. Have I mentioned lately how much I love this guy? He truly is invested in Gabriella and cares for her so much. Anyways, as his urgency grew, I asked about todays ECHO. Like my blog title says, it was inevitable. I knew we were going to hit a month where the results weren't stable and consistent with the month before. We dodged bullets until we could no more. He said her left atrium is growing. As it grows, it starts disturbing the heart connections all around it, like an electrical system that gets crowded.

What are arrhythmias? Simply, they are like episodes of irregular heart activity. They can cause tiredness, chest pain, dizzyness, fainting... and in her case cardiac arrest. This exact thing is what I have mentioned in the past.... about those stories where young people collapse and die suddenly while playing sports because they were unaware they had a heart condition. You can read more about Arrhythmias here if you want to read in detail: WIKI But if you are anything like me in faith and hope, just rebuke the constant phrase 'sudden death'.

Of course, she could have aquired these episodes long before today, but the growth of her heart only makes the risk that much greater, and enough that our cardiologist is ready right now to get things in order. It is quite possible she may have had some arrhythmia episodes in September that caused her stroke, as I am discovering with research. Time is essential now. No more wasted time, neurologists vacations, delay in testing, etc etc etc.

So what happens now? Thankfully, Gabriella's MRI is this Friday bright and early. Given we can get the results sent to Loma Linda in a quick timeframe, we will head over to Loma Linda next week. They will reevaluate her and relist her. There is nothing standing in our way besides the results from this test. I am ready to be wherever I need to be whenever I need to be there. She just needs this heart. And soon.

So many updates, so little time.

Oh, the updates.... oh, the issues we've had! Please feel free to vote for me in the 'worst blog updater ever' awards!

Gabriella had her 5 year well child visit on the 18th. Thankfully, it was a seamless appointment! Though the vision test was hard due to her communication issues, the best part of the appointment was the fact that she gained 5.5lbs in 2 months!!!!!!!!!!!!!!!!!!!!! Praise God!!! She rang in at 41.5lbs and 45" tall! Loma Linda should be thrilled with this progress when we go back to see them!

Her last cardiology appointment went well. Her ECHO looks similar to previous check-ups, which is always a good sign. Because everything seems to be creeping along at a snails pace with Neurology, her cardiologist put a 24hr holter monitor on her to see how her rhythms were over the course of a day as a preventative measure. He seems to be as irritated as I am that everything is taking so long. I'm STILL waiting to hear back results, but I am sure everything looked okay if they have not yet contacted me!

Neurology. Oh my, what do I say? We finally got a consultation last Thursday from the doctor upon return from his nearly month long vacation. My biggest frustration is he seems to forget who Gabriella is and what her situation entails every time we see him, and doesn't bother to read the chart before he speaks with us. He was, again, not in a rush to get a MRI or stop the Lovenox, so I needed to remind him her life depends on this. No transplant listing without the MRI clearance. So when he remembered her story, he wrote a stat MRI order. He also surprised me by saying he wanted her to continue her Lovenox injections until he gets the MRI results... which was a huge disappointment to us. Poor Gabriella's belly is so beat up from the ports and tapes. I called Friday morning to their scheduler, who was out for the day and the back-up had no orders for Gabriella. Thankfully, the girl covering got the orders in and pushed through, but not in time for Phoenix Children's to schedule the MRI Friday. I left messages, with no return. Finally, today they called and scheduled her MRI for February 5. I am still unappeased with having to wait nearly 2 more weeks, but I have to trust in God and His timing on all of this.

Another position of stress I have been put under was last week when Gabriella's therapy clinic called me. They told me they got word from her benefits plan that her 60 days of therapy per year did NOT start January 2010 like we were led to believe, rather it began in October when she started therapy. SO my pushing and packing of therapy into 2009 only resulted in hurting her future sessions. We have 27 therapy days left until September 2010. This means she can have therapy ONCE per week.... yes, once. Her being on 2 days a week right now is cutting it shorter than we would like... and going to one is beyond unacceptable to me. So, my boxing gloves go back on. Rarely do I remove them, but they are on now and for good. I am fighting insurance and demanding an additional 30 days for this calendar year so Gabriella can continue on her twice a week program. We have been seeking other forms of therapy and coverage, but not getting very far. And even if we do secure additional therapy, I would want that above and beyond what she is already participating in! She had such an amazing session last Thursday, and like Mrs Lisa and I agreed, it wouldn't be without this frequent therapy. Gabriella is the type that needs to be pushed to succeed, and she will not willingly accept the push from me, her mother. (haha, sounds NOTHING like me.....) I will be sure to keep my blog world updated on the steps of this insurance dispute. I will win. This is ME being pushed to succeed.....

Otherwise, there's no major updates to fill you in on. Gabriella is having severe irritation in her airways, and we are watching it closely. The fluid leakage into her lungs and decreased function due to the heart condition can potentially and will eventually cause damage to her lungs. The primary focus right now is getting this MRI, showing the Doctors what God can do to heal her brain, and getting that approval for transplant. Gabriella needs this heart, and we cannot waste any more time.

On top of praying for the typical points for Gabriella, can I ask those who have the time to pray for us? Really in light of everything going on, what I'm dealing with is normal... but prayer for what God wants of ME personally and my relationships would be great. I want to be what God intends for me to be for everyone in my life, and even those I have yet to meet. I just want God to continue to prepare me and use me best to always show His love. On top of that, and much more serious, we have some decisions to make come March/April. My mom is closing on this house and moving to a smaller apartment, and if you don't recall we moved in here with her to wait before Gabriella had her stroke. If we have not yet received the transplant call and already moved by April 30, we are not too sure what we will do. Our obvious options are to move in with someone else while we wait, go month to month on a small apartment, or Gabriella and I move to SoCal and wait there while Paul and PJ stay here. Finding the right choice and the finances to support it is our focus.....

Thanks Gabriellas Heart readers. You are all so near and dear to my heart!

New Support Page

Here on Gabriella's blog, above all of the entries, is a new little permanent clickable blurb. I have created a new blog in conjunction to this one with all the ways to support Gabriella and be involved, and all previous posts have been moved there. I'll continue to put up reminders here when there is an event or new way to join in, so no worries there! I just think a seperate support page will be helpful in organization and ease for my readers!

Please visit it here:

Support Page for Gabriellas Heart

Thanks for understanding! I never imagined I'd have so many readers and so much to blog about! I am looking for every way possible to make this easy to read and navigate. :)

Happy 5th Birthday to Gabriella

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

So tiny, so fair. January 14, 2005 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 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 4th year of life. Things most people will never have to face. You are my hero. You are a hero to many.

Though your words are few, your life speaks volumes. 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'. Your 5th birthday is a blessed one, and one I will cherish forever.

Disneyland pictures

I posted on NYE about the generosity and kindness of some people who made it possible for my kids to get the ultimate Christmas gift. The post can be found here: Spirit of Santa, January 31, 2009.

Finally, I was able to get the pictures sorted through, narrowed down and uploaded for your enjoyment! And yes, 163 pictures is narrowed down. Enjoy!

Disneyland Christmas 2009

I'm Still Yours

Music can pretty much speak louder than any other avenue, in my personal opinion. Last year, through the struggles of learning to live with Gabriella's heart condition and the struggles we were preparing for... Miley Cyrus, The Climb was my song. It spoke, no... screamed at me. It was everything I needed to hear and defined Gabriella's climb.

I have a song that is now my #1 most coveted Christian song ever sang by my most favorite Christian band, and feels like is the anthem to our lives since Gabriella's stroke. The words are rediculously profound to us. If you washed away my vanity, If you took away my words... To the God who gives and takes away.... When my life is not what I expected.... Will my broken heart still sing? Seriously. How much harder can those words hit?

Please take 3 minutes to listen to this song and spend some time with God while you do it.

I'm Still Yours
by Kutless

If You washed away my vanity
If You took away my words
If all my world was swept away
Would You be enough for me?
Would my beating heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives and takes away

If You take it all
This life You've given
Still my heart will sing to You

When my life is not what I expected
The plans I made have failed
When there's nothing left to steal me away
Will You be enough for me?
Will my broken heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives
And takes away

If You take it all
This life You've given
Still my heart
Will sing to You

Even if You take it all away
You’ll never let me go
Take it all away
But I still know

That I'm Yours
I'm still Yours

Oh, I'm Yours
I'm still Yours
I'm still Yours

Gabriella is progressing!

Gabriella's words and sounds are exploding! She is getting (by small strides) more efficient in making the correct sounds for words without much prompting or queuing. These sounds will only get sharper and more understandable as she trains her mouth to make the movement more, in turn allowing her to put words together! This is why therapy is SO important, to keep her mouth working and making these sounds. The more she does it prompted, the faster it will become an automatic thing!

Drumroll please...

More
Mama
Papa (for food)
Boo
Wow
Mommy (mommy's)
Baby
Daddy
Me (daddy's)
Mine
No
Nope
Coke
Go
Caca
Piece
Cheese
Play
'this one'
'I want'

YES! That's 20 words!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She did it! It was my goal for her to have 20 words by the new year and all of those she acquired by then! How AMAZING is she?!?!?!

I have also had multiple people point out how well her arm/hand is doing. Looking at her, you can no longer tell she has a deficit in that arm. It is only prevalent when she uses it, and even then you can see nothing slows her down! She holds it with more confidence, extends her fingers beautifully and is using it!!! She is dressing herself and putting her own seatbelt on again! Her occupational therapist mentioned reevaluating her soon to see about possibly cutting back her OT therapy! That's my girl. My little fighter!

And more good news.... Gabriella is up to 41lbs! She is making HUGE strides in her weight gain and at a weight I am SURE Loma Linda will be happy about when we resume clinic visits!! Praise God, and my deepest thanks and appreciation for everyone praying for her. Your prayers are working. She is getting to a wonderful position to be listed for her heart... what is now the final stage to getting my girl healthy and in a 'normal' life.

Gabriella's Heartsong - January 15

We truly hope you can come out and join us! It is going to be a GREAT night of singing and supporting Gabriella!

Thanks so much to Kelly and the Hope worship team for putting together this awesome event!!!

Download the flyer by clicking here: DOWNLOAD Please print off some copies and bring friends!!

Facebook event page: Gabriella's Heartsong

January 15, 2009 from 6-9pm at the Stadium Club in Chandler

2009 Year in Review

It began as any other year.....

January
Gabriella turned 4!
Pediatrician heard a strong murmur.
We moved into a new house!

February
Paul and I celebrated our 7 year anniversary!
MaggieMooDesigns turned 1!

March
Gabriella's journey began with an irregular and unexplainable EKG and Echo.

April
I turned 27..... (eeek)
Gabriella had her first heart cath and was diagnosed with Restrictive Cardiomyopathy with Myocardial Bridging.

May
We find out Gabriella needed a transplant.
We started our adventure, making the most of every opportunity!
We were interviewed by KTAR radio and 2 news stations.
A comedy fundraiser was held for Gabriella.
A spaghetti dinner fundraiser was held for Gabriella.
Our family grew stronger.

June
Gabriella rides a bike.
Gabriella has her first dance recital.
I leave my job.
Gabriella starts with the mitral valve leakage.
Our family takes us to Disneyland.
Gabriella attends VBS for the first time.
Anaheim Angels wear Gabriella Bands!

July
Pre-transplant testing begins.

August
Gabriella's wish is granted by Make-A-Wish.
We ran away to stay with friends in Sacramento.
We had our Loma Linda intake appointment (with a side of Disney)
Golf fundraiser for Gabriella.
A new member of the family is born.

September
PJ turns 2!!!!
We make big decisions.
Rummage sale fundraiser.
Appointment at Loma Linda.
Gabriella has her stroke.

October
We move in with my mom.
Gabriella goes home after a 3 week hospital stay.
Rehab life starts.
Halloween!!!

November
I get a complimentary spa day.
Gabriella is hospitalized with pneumonia.
Gabriella appears in the Gilbert Republic.
Kids see Santa!!
New Moon premieres!

December
Nutcracker, Zoo, Letters to Santa, Christmas parties.

This year has been insane. 2009 tried it's hardest to break our spirits and knock us down, but it failed. No one is stronger in my eyes than my amazing Gabriella, and the strength she gives the people she meets is insurmountable. We go into 2010 with new armor of faith, positivity and love... and 20-10 is shaking in it's boots at the sight of us!

Happy new year to everyone!!!!!!!!!!!