Sparkly heart update #5

Nothing new yet. Just had to come here and send a general thank you to everyone out there praying and investing time in Gabriella's transplant today. Your prayers have been a blanket of comfort and peace to us as we start a new path in this journey.

Gabriella's surgery will take about 6 hours total. We left her in the hands of amazing surgeons, nurses and medical staff at 730p, and the surgery itself started at 918a. Hopefully, things will wrap up and we can see her at about 130a. They will wheel her by the consultation room we are sitting in and we can see her briefly. It will take about 30-45 minutes to get her stabilized and hooked up to everything in the room. As long as she in on the ventilator, we can only see her for 10 minutes every hour. PLEASE pray that isn't too terribly long, as this momma does NOT like being away from her baby.

We don't know yet where the heart came from, but we know that regardless of the heart's state, age or gender... it came from someones child. I urge you to praise God for Gabriella but also pray for Gods peace for the donor family.

*****Just got another text update: surgery in progress everything ok******

Sparkly heart update #4

918p PST: Surgery just started. Going well.

Sparkly heart update #3

Hardest thing I have ever done was to just leave Gabriella. She just went into the OR. They gave her Versed to calm her but she still cried for mommy the whole way. My heart is breaking. I can only beg to God to protect her as her life changes forever tonight.

Pleading for prayer tonight from everyone.

Sparkly heart update #2

We just sit and wait. We are all settled in to her room and have done all the bloodwork and xray. The team left to get the heart around 2p and we are expecting her to go in around 6pm!

I will keep updates posted as they come!!!

Sparkly heart day update #1

We got the call at 1055a. I had just finished getting ready to take the kids to run some errands. My phone rang with Loma Linda's ringtone and I knew what it was! Kay told me "we have a heart for this little girl!" And the ball started rolling. I made my phone calls to the jet, some family and got my bags together. Everyone came to help us get PJ, tend to our car and see us off!

Today was day 97 waiting. I have had a rough week emotionally this past week because I saw my time with Gabriella quickly slipping by. Its amazing how different this call was verses the false alarm for us emotionally. It was right. It was Gods plan. Part of my heart is excited and nervous and so focused on God for Gabriellas safekeeping. The other part of me is grieving for the mother and family of the child gone to be with God and who gave such a priceless gift to us.

I'm blogging right now from the plane and will send this on when we land. We will go to the hospital and start the prep process. It will be later this afternoon before the surgery is started. Please keep watching for updates here and on our Twitter all day as we progress through surgery and recovery on Gabriellas 2nd birthday, May 17, 2010.

Heart!!!

We are headed to get Gabriellas new heart!!!!!! Please pray and keep up on twitter.com/GabriellasHeart for constant updates!!

Lookie there....

A couple of hidden gems have been added to www.GabriellasHeart.com!

First, on the top right sidebar, is an option to sign up for Gabriella's updates by email! Just plug in your email address, confirm the email sent to you, and you will be notified anytime a new blog is posted to Gabriella's website!

Also, on the very top Navigation bar is a new Guest book! I know from my own personal experience, sometimes it's nice to just leave a note for the family without posting a comment to a specific entry. I wanted to make this available here. Remember this when Gabriella gets her call, as I will read to her all the loving prayers and messages that I'm sure will pour in!

Thanks for putting up with my random late night enhancements! (Yes, I actually typed this at 1240am)

It is truly amazing.

Yesterday was the one year anniversary from learning that Gabriella would need a transplant after only 2 short weeks of knowing we had a sick child. I can remember the sting to my soul when Dr Alhadheri told me those words "she needs a new heart", and the immediate crash afterwards. It felt like a true out of body experience. I saw myself weeping in the doctors office, walking to the car, sitting in the seat of my van and not knowing what to say or do or how to even move. I felt numb. I went back to work so I could sit in my office with the door locked, just so I didn't have to go pick up my kids and have them see me that way. My world had been shattered. Motherhood as I knew it was forever changed. My marriage changed forever and instantly faced something we never imagined it would face.

When I look back over what the last year has given us, I know God has carried us the entire way and laid the most enormous hands of protection over Gabriella (the image in my head of that overwhelms me). May 11, 2009, I felt like I didn't know how to breathe anymore. May 11, 2010, I fight on for Gabriella. The pain and anguish we felt when we found out the severity Gabriella's life, and how short it could potentially be, is something we will never forget or get rid of, but we have been able to move in a forward direction from it. We had the option to handle this in many different ways, but we chose the route we took based on our faith and support. And to any of you reading this, YOU have been part of that.

I will never forget that day though, and will never minimize or try to "get past" the feelings I felt. It is because I choose to remember that pain that I can fight so hard for her today.

If you'd like to read back, please read Just When You Think You are Already on the Beaten Path from May 11, 2009 and the follow up that is linked to May 12, 2009.

Happy Mothers Day

In celebration of my fantastic idea that Mother's Day should be a week long holiday, I'm technically not "late" in posting my Mother's Day wishes, and will continue to milk the appreciation and love as far into this week that I can!

Happy Mothers day to....

.... all of the women who have become mothers through birth, adoption, fostering or surrogacy

.... all of the Godmothers and Aunts

.... all of the grandmothers, great-grandmothers, nana's, gammy's, etc., with us and in heaven

.... all of the mothers of angel babies gone to heaven

.... all of the women who filled in for a mother when one was absent

.... all of the single fathers who play the role of both mom and dad

.... all of the women who are not yet mothers but desire to be one day

.... every women out there who has in one way or another enriched a childs life. It takes a village, ya know. :)


God bless every woman in my life!

Friday Funny

I told my sister in law a couple weeks ago that not everyone can make a mini van look as cool as I do. Then I found these people.....



I love my Sienna, too, Swagger family!

Cardiac Catheter is Scheduled

So we got word this week that Loma Linda wanted to go ahead with the heart cath for Gabriella. They don't have any concerns about her having another stroke, though I will be far more 'cautious' in that thinking. I got everything scheduled today. We will skip our May clinic appointment and head over in June for clinic and the heart cath. (busy hospital, skinny schedule) Daddy will go with us for this trip, and we will take PJ, so we are hoping to have a couple relaxing days in California together before the early week procedure.

I will not say I sit here going into this with as much comfort as I typically have, but I still sit here with as much faith. When they do a heart cath, they go in through the femoral artery in her groin and send a tube up to her heart that they can thread in various tools and cameras thru. They will measure the internal pressures of her heart and lungs to check for things like pulmonary hypertension and high blood flows of the heart. After the procedure, she must lay there, completely straight, for up to 6 hours in order for the artery to reseal (form a clot= a necessary evil). I am curious to see how this time is lengthened due to her being on aspirin? This is the same procedure they did April 24, 2009 to find out why her heart showed enlarged on the echocardiogram, marking the beginning of this journey. The hardest part will be that Paul and PJ will have to wait for us back at the hotel, since PJ cannot go into the hospital. We are still exploring our options there. But this needs to be done so they are prepared for any possible complications she may have in transplant, since kids with RCM present with lung issues most of the time that can make recovery a difficult time.

I have very specific prayer requests for the next month for anyone willing to take this on. So much can happen in 30 days. The first request being that if she were to get her new heart before this cardiac cath happens, that there are no unexpected complications. The second being that if we do make it another month with no heart offer, that she stay healthy for this procedure and the cath come back that her lungs are strong and healthy. And the third, that Gabriella is protected from any chance of stroke with this procedure. I can't even begin to think... she has already lost her speech and right arm... so I beg you to just pray that God spare her any more struggle from stroke repercussions.

To piggy back on this entry, Gabriella could just use some overall positive prayers. This last week has been trying. Paul and I have both noticed a change in her overall stamina and being. Last night playing with her cousins was the most interactive she has been all week, but it completely beat her by the end of the night and into most of today. She still smiles and gives that precious "uh-huh" in a cheery tone when we ask her if she is okay, but you can see it in her eyes. She is giving us grief eating again and is visibly loosing weight again. She has been off the appetite stimulant for 2.5 months now and its starting to be noticeable. If I had to plot her last week on a chart compared to the past 6 months, it would be a definite decline overall. And along with all that (probably DUE to that), and to take a selfish sentence for me, I have been having the most wretched nightmares that cause me to force myself awake for a while. It's been a difficult week. Granted, we are so very lucky to be a year into this now and her not be in a deeper heart failure than she already is. But it does not make the slow decline any easier. We know it is going to get worse the longer we wait for her sparkly new heart.

Another question answered: How do I feel about 'strangers?'

from www.formspring.me/GabriellasHeart another anonymous question....

How do you honestly feel about the people you have "met" either via Facebook or Twitter, wanting to meet you and your family, or who offer to help? I know I have been personally touched by Gabriella's story and in a small way feel like I know you.

I firmly believe through this process that God has placed people in our lives in a way to bless us.

I have never been opposed to meeting people online. I think caution and just using your brains is a good way to stay safe. I met my best friend online in the summer 2004 on a preggo mommy website. I also met 60+ other women who have become strong towers in my life at the same time. I met my best friend in person a year later, and quite a few of the other moms over the years. I have had 'strangers' come up to me because they recognized me or Gabriella from the blog, and though it is a little weird (I can;t imagine celebrities!) I think it is fabulous to meet the people who love my daughter and follow her story. I have met in person a few other heart moms that I met online. The literal sense of meeting people from online doesn't bother me too much, but I am cautious for sure.

In a more emotional sense, I can honestly say that people I 'meet' online are such an important part of our journey. Grasping the concept that there are people out there who have never even met us, can care so deeply for the wellbeing and life of my baby is indescribable. It is the whole idea of selflessness. It is super easy to have compassion and care for your own family or friends, but to lend a part of your heart to a complete stranger out of compassion and concern is beautiful, and exactly what Jesus did. People who want to help Gabriella or us either monetarily or emotionally are taking something very valuable that is theirs and choosing to give. In 2010, how many selfless acts of kindness do you really see on a weekly basis? This whole experience with Gabriella has opened my eyes to how beautiful people can be. Choosing to give either hard earned money as a donation, time in helping with something, or prayers when they themselves have plenty on their own mind is a CHOICE people make, and I firmly believe with all my soul that God smiles every time someone does so.

We pray for all of the love and support that people have given to us. We feel the embrace of everyones prayers and well wishes. It keeps us going knowing that at any given time, someone somewhere is thinking of Gabriella and lifting her in prayer or positive energy!

So, bottom line... I love you all for loving my Gabriella. *sniff sniff* THANK YOU!

You asked...

I really like Formspring.me.... if you haven't checked it out yet, look at our page here: http://www.formspring.me/GabriellasHeart People ask me questions, anonymously, and I can answer them. I know there are new people to my blog who have questions, old faithful readers who need clarified, or everyone curious about Gabriella in some way.

I received 2 questions that I definitely wanted to post here! Please feel free to go there and ask me anything! I have no way of finding out who asked me what!

How much does Gabriella know about her condition? How have you dealt with explaining why she has lost her speech?

I'll never forget, when Gabriella had her stroke, my pediatrician told us that the reason he loves working with kids is that they don't have an acceptance for being ill, like adults do.

Gabriella, from the beginning, understands her heart is very special. She was just over 4 when she was diagnosed, so we had to be very gentle and careful with what we told her as to not scare her. The way we explained ECHOs and EKGs was to tell her that her doctors wanted to look at her heart because it was so special. Blood work was because they needed to check to make sure she was healthy enough. As things got more serious, we explained that doctors needed to fix her heart to make it perfect. During an interview with a news station, when asked what she knew about her heart, she said "Doctors are going to make it sparkly" and so the phrase was keyed by her. We went to Loma Linda for her listing appointment in August and she knew we were going to fly to that hospital and thats where they would fix her heart.

Then she had her stroke, at just 4 and a half. Our immediate way to explaining it to her was that she got an owie in her head and that she was like the little mermaid and lost her voice. We made it a point to constantly ensure her that it didn't happen because of anything she did wrong, that is just happened and that she was so strong that we would work hard to get her words back.

Now that she is a little over 5 and has faced a lot of things most grown adults have never experienced, I think her understanding is growing. Though we never told her SHE was different from other kids, she will often point out her special arm, her voice and her heart in scenarios that she is explaining why she is different. I use the word special, because that she is. Different can have a negative connotation, and I never want her to settle for thinking she is any less worthy of anything than a child who can efficiently use both hands or speak.

I had a very difficult time for quite some time deciding how much to tell her about heart transplant. Telling her too much could scare her to absolute ruins and make clinic appointments, or even the travel when we get the actual call, unbearable. It has also been proven that having a positive mind going into a surgery dramatically improves your tolerance of surgery and recovery afterwards. But telling her nothing would be lying to her. So with a lot of research and consulting with others, I think we have a safe communication about the transplant. She knows theres a problem, she knows we need to fix it... but does not know the process of replacing the heart. I actually bought a book on Amazon about explaining heart transplant to children. I plan on showing her afterwards and having some very honest conversations with her. I will have to explain the mark down her chest and the massive amount of medications compared to the mere 5 she is on now. But after seeing how she responded with so much trust after her stroke to therapies and twice daily injections, I know she will be able to handle this.

The hardest part for my mommy heart? That my baby has to grow up this fast.

Does this $ go dirctly to Gabriella care or others? not that i wont help others...I just really touched by her face tonight! I was a preschool teacher and No child should ever have to go thru this! best wishes

All donations go directly into Gabriella's medical expense account and used for expenses related to both her stroke and heart transplant. We have had fundraisers for her and they came to be the biggest blessing to us with her unexpected stroke and therapies!

One day we will start a non-for profit organization/ ministry and raise funds to help other families who struggle due to their child's illness with lifes necessities. It's kinda become a dream of ours and we know it is God directing us to do so! But all Gabriella's medical donations will remain separate from this. She/ we will have a lifetime of financial burden with medications and rejection tests, so there will always be a need for her!

Early Screening

Ahh the power of Twitter. I have a lot of people ask my what the point of Twitter is or why I use it. Used properly, it can be a powerful networking tool. I have met so many fabulous people there. From other heart parents to advocates to organizations spreading the word on things that interest us.

I was led to a video from @Babyheart_org on Twitter which hit close to my own heart. As much as I am an advocate for organ donation and congenital heart defect awareness... from day one of this journey I have felt strongly about early screening. It might be because Gabriella's condition is a silent killer, and typically presents itself upon sudden cardiac death. Cardiomyopathy, a large percentage of the time, the diagnosis when you hear about a teenage basketball player sudden dying on the court, or a college football player dying in practice.

The video I mentioned is about a 17 year old, completely healthy football player who collapsed and died from sudden cardiac death. Though his condition was found to be mitral valve prolapse (one of Gabriella's defects), it still could have been treated and his life spared had early screening been a requirement. Please watch his amazing father here: Detecting & Preventing Heart Defects

I know God is preparing me for the future. There is so much I want to do, like volunteer with Make a Wish, train Gabriella's future puppy to be a therapy dog, help with the new support groups at the new transplant center here in Phoenix that the coordinator contacted me about. But I have also been gathering links, studies and information to use in my proposal to the school systems. I hope to be able to take information and a proposal to the district offices in Chandler, Gilbert, Mesa and wherever else God leads me, to require mandatory heart screening prior to children participating in gym class in elementary school, or at minimum before playing organized school sports.

In Gabriella's case, a simple innocent murmur, followed up by a 5 minute EKG, detected there was a problem... and we were blessed by God to even be sent for that. Granted we would have found out when she had her stroke, but if she had not had the stroke we wouldn't have found it until it was too late.

If we can get this to be a mandatory test done at the same time as physicals required to enter school, we can save the lives of children who are going undiagnosed. And like the video said, and Gabriella's 4 years of life prior to diagnosis proves, there aren't always symptoms. In small strides, and paired with what Kristine, Cora's mom, is doing for early pulse oxcimetry screening, and we can seriously impact the world of Congenital Heart Defects.

Are you having a Bountiful morning?

I am!

My friend Melissa has been participating in this food co-op called Bountiful Baskets for quite some time now. I am always insanely jealous of the goodies she says she gets! My sister started it 2 weeks ago and I decided I need to just get on board and see what this is all about.

I went to www.BountifulBaskets.org and signed up for an account. I paid $15 for my basket, $1.50 processing fee and $3 first timer charge, $7.50 for a mexican ingredient add on and $10 for 6 sheets each of 5 flavors of cracker bread in 8x10 pieces add on. $36 got me this:

1 bag raddishes

1 Honeydew melon

1 Cantelope

1 bunch of bananas

1 bundle of spinach

1 bundle of romaine lettuce

4 artichokes

2 cucumbers

4 tomatoes

8 kiwi

8 apples

3 clamshells of blackberries

24 sheets of cracker bread

Mexican pack: tomatillos, Grey Squash, Serrano Peppers, Avocado, Cilantro, Mexican Limes, Garlic, Green Onions, Yellow Onion, and Jalapenos

I won't even begin to guess how much that would cost me at the grocery store, but they say the basic $15 basket runs $55-60 in value!!! And for the past 2 years this is what I mainly buy, fresh ingredients. This will not only save me TONS of money on my grocery bill, but broaden my cooking horizons. Artichoke? How the heck do you cook an artichoke?? And the best part is they buy supply from as local as possible. That, I am all for!

Other things they have for add on's this week were 3dz 13" tortillas, 2dz 6" flour tortillas and 2dz 6" corn tortillas for $10. And also 5 loaves of 9grain bread for $10. Every week has new add-ons to pick from, or you can just buy th3 $16.50 veggie and fruit basket and be done!

I'm so excited, can you tell? Maybe I'll start a blog like on Julie & Julia and blog about my experiments of cooking. Probably not, but its a fun idea in the moment. LOL

So if you live in Arizona, Utah, Nevada, Wyoming, Idaho or Washington, I strongly urge you to check them out!