Rest in Peace, Steve

Steve Catoe was a hero in our heart community, and his heart was made perfect today as he passed away, right at 66th anniversary of BT Shunt procedure- a groundbreaking surgical option that has saved the lives of ToF children for decades .

He was known as Adventures of a Funky Heart or @funkyheart on Twitter. He was an advocate to the max, and lived his life for Congential Heart Defect awareness. I followed him as he lobbied in Washington for CHD's and he wrote precious blogs on my Gabriella when she was transplanted HERE and HERE. He has been a great internet friend support for over a year now to me. He always had a very calm and confident answer to anything hearts, and though his heart was imperfect he wore it on his sleeve as if it were made of Gold.

I felt like he fought for not only all children with CHD's but also for my Gabriella individually. There was something so personal about my interaction with Steve and the compassion he had for people living with a CHD. He also helped me feel pride in being a heart mom by his encouragement and perspective as an adult CHD survivor.

This is a eye opening reminder that CHD's are never cured, they are just patched. We must fight harder for a cure so our children can grow old and not fear an untimely death in their teens, 20's or middle-aged years.

Steve will be missed... but his legacy will remain in the lives he has helped change over his years advocating and fighting!

Added: a video of Steve at a Symposium in 2009 http://vimeo.com/6104553

Saving Little Hearts CHD Symposium 2009: Steve Catoe from z11 communications on Vimeo.

Psalm 139

1 O Lord, you have examined my heart
and know everything about me.
2 You know when I sit down or stand up.
You know my thoughts even when I’m far away.
3 You see me when I travel
and when I rest at home.
You know everything I do.
4 You know what I am going to say
even before I say it, Lord.
5 You go before me and follow me.
You place your hand of blessing on my head.
6 Such knowledge is too wonderful for me,
too great for me to understand!
7 I can never escape from your Spirit!
I can never get away from your presence!
8 If I go up to heaven, you are there;
if I go down to the grave,[a] you are there.
9 If I ride the wings of the morning,
if I dwell by the farthest oceans,
10 even there your hand will guide me,
and your strength will support me.
11 I could ask the darkness to hide me
and the light around me to become night—
12 but even in darkness I cannot hide from you.
To you the night shines as bright as day.
Darkness and light are the same to you.

13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.

17 How precious are your thoughts about me,[b] O God.
They cannot be numbered!
18 I can’t even count them;
they outnumber the grains of sand!
And when I wake up,
you are still with me!

19 O God, if only you would destroy the wicked!
Get out of my life, you murderers!
20 They blaspheme you;
your enemies misuse your name.
21 O Lord, shouldn’t I hate those who hate you?
Shouldn’t I despise those who oppose you?
22 Yes, I hate them with total hatred,
for your enemies are my enemies.

23 Search me, O God, and know my heart;
test me and know my anxious thoughts.
24 Point out anything in me that offends you,
and lead me along the path of everlasting life.

Thankfulness 2010

I wrote a blog post last year on Thankfulness and even one year later I still love it. Finding the light in dark times, finding the calm in the storm, finding miracles in the mess... seems to be my lifes theme 2 years running. What an honor is that? God has put me into a place emotionally and spiritually where I CAN have this ability. Sure, its not easy to ALWAYS be positive. I get overwhelmed just like the next guy. But if I can learn something from that experience or be able to look back, I came out ahead regardless.

This past year has landed its own set of challenges. Reading last years blog entry, I was thankful for things like losing our home, Gabriella's failing heart, strains amongst friends and family relationships, our tested marriage, etc. Still to this day, I thank God for the paths he led me down and how it shaped the way for the year 2010 would be.

I am thankful for medicine. The fact that this is 2010 and because of the advancements in medicine and struggles of heart families in the past, there was a miraculous procedure available and perfected to save my daughters life. Because of the research and procedures Dr. Bailey began over 30 years ago and the hard work put in by the team over the last 3 decades at Loma Linda University, Gabriella is sitting at the table on Thanksgiving day scarfing turkey and pumpkin pie. :)

I am thankful for a very special family, who took their tragedy and turned it into someone else's miracle. They are a part of group of people that I find to be true heroes... organ donor families. While I am thankful for the decisions our donor family and all donor families made, my heart aches for them and their loss. But I am thankful for the possibility that their loved ones can live on and be honored by their recipients!

I am thankful for my heart healthy son who keeps me on my toes and reminds me that we are still the typical family! Still looking for the thankfulness and "calm in the storm" to the terrible 3's.... but I am lucky to have him nonetheless. :)

I am thankful for the amazing support we have been shown by people outside of 'the circle'. Our family and friends have always been there and such an amazing support, but the love and compassion we have been shown from strangers, new friends, organizations, blog readers, has been such a pleasant breath of fresh air. We have been able to be part of some pretty amazing events with Ronald McDonald House, heart communities and groups and support systems that have introduced us to some fantastic people.

I am yet again thankful for financial struggles. This has been the hardest year by far. With overtime, Paul is making just enough to cover the bills, medical expenses and necessities. It is hard, absolutely terrifying sometimes, but has taught us very valuable life lessons. It has taught us to appreciate the dollar, and not only the dollar but the necessary items that dollar buys. Because we have decided that I need to stay home with Gabriella and PJ due to her medical and school needs, we turned this limitation into a learning experience. Of course, I would be thankful is we won the lottery as well. ;)

I am thankful for my husband who works hard for our family. Also, that he trusts me so much with Gabriella's medical care. Having been married almost 9 years, I know that it would be impossible for us to have the super deep level of marriage that we possess without our severe struggles. You can't reach the top unless you've been to the bottom, right?

I am eternally thankful for my faith. God is my rock, my only solid foundation. To know how much I am loved by Him helps me to be a better person. I have seen and experienced His miracles firsthand and feel lucky to have been chosen for that purpose.

I am so blessed to have amazing nieces and nephews and friends kiddos, supportive family members, loving friends both new and old. So blessed to have a cozy apartment and 2 working cars. Blessed to have our needs met. Blessed to be able to give back to other heart moms, charities and organizations by donating items or time or telling our story.

And I am thankful for little things like splurging on a Starbucks latte, the ocean breeze on the Pacific coast, crisp cool mornings in the desert, photographs, DVR, and so much more. :)

On this Thanksgiving, no matter what your story may be, make it a point to focus on one seemingly negative event that happened this past year. Really think about that, and what you can be thankful about from that situation. Encourage others to do the same. This may take a traditional of saying what you are thankful for together and turn it into a dinner conversation topic!

God bless everyone this weekend. Make memories. Take pictures. Think positive. Be thankful.

6 month follow up

We just got back from a 5 day trip to Loma Linda for Gabriella's 6 month follow up appointments. We were in Arizona 52 days before returning, and it felt like forever, until I pulled up to Redlands, California and felt like we never left. I truly love it there...

Everything looks great with Gabriella! She had kidney function testing, in which they injected her in one IV with a substance and over the next 4 hours, took blood from another IV to see how her kidneys were filtering out the substance. They are working great, which is a relief to us! With the transplant medications, they can be very hard on the kidneys, creating problems over time.

Gabriella has her blood drawn also for genetic testing, which I finally got approved after months of arguing. Why not test her blood? We could get answers and if nothing else, they can maybe extract some information from her blood that could help future kids who are diagnosed with Hypertrophic Cardiomyopathy with Restrictive presentation. I'm all about using the tools we have accessible... and while it does cost my insurance money, it is a responsibility to get all the information we can for medical purposes. Those results will take a good 8 weeks to come in, and we will head back to Loma Linda for a follow up with genetics.

One of her med levels has been running low lately, and again at this appointment. They increased one medication a little which seems to be a trend with Gabriella! Her whole childhood will be like this, as she grows, so we will keep a close eye on her numbers and blood draws to catch her deficiencies quickly!

Gabriella was also placed on Magnesium supplement a few weeks ago as her magnesium levels were severely low. This medication is compounded and if any of you transplant moms know, it is miserable to draw up! Gabriella is going to try swallowing the tablet on this next go around! Shes such a big girl!! She is also on an inhaler for her new asthma diagnosis and is doing a million times better with her cough!

Every issue we run into is super minimal, and overall we are so happy with her progress. Speech therapy is biweekly now, and we will be filling in with therapy from the school district. We went to monthly transplant clinic appointments which totally just floors me! I cannot believe we have weaned off that far!!!!

Can you believe it has been 6 months? I sit here in my apartment feeling like it was just yesterday we got that call and was scrambling to leave here. I think of all of the time that has passed in between and while it looks like ages on paper, it feels like moments in reality. Then I look at Gabriella and all time seems to not matter when I see how much older and mature she looks!

G meets Kat Von D

Last week, I entered a contest to be on of 100 people chosen to attend a private book signing event with Kat Von D in LA... knowing we were travelling here for Loma Linda testing anyways. You could imagine my shock when I got an email saying I had WON! The details of the event were being kept a secret until the day of the event, which was the same day we were driving into town. I was beside myself, as well as Gabriella who is a HUGE Kat fan! I jumped the Christmas list gun and bought my book early... which was one of like 3 things I asked for Christmas anyways! On our way to California yesterday I got my email, stating that the signing would be at 7pm at her new art gallery in West Hollywood named Wonderland. My amazing friend Shannon hung out with PJ while Gabriella and I went to the signing, being the only momma/kiddo combo there!

From Kat Von D

From Kat Von D

In Kat's well known throne!

From Kat Von D

Gabriella with Kat's brother Michael

We got in line and got to meet Kat all in 10 minutes! Gabriella was beside herself and even let out a big SQUEEEE right before our turn! She was absolutely amazing.... such a sweet and outgoing personality. She was talking to Gabriella and complimenting her outfit (which she picked out and HAD to wear!) and saying how cute she was. I had the chance to tell her that it was awesome to be able to celebrate there, as it was her 6 month post-heart transplant anniversary! Kat said how much of an inspiration that was to hear and see Gabriella there doing so great! Said it makes her realize all the little things are nothing. I was too flattered.... we were the ones who was supposed to be complimenting her!!! I did get a chance to thank HER for being an inspiration as well!

From Kat Von D

From Kat Von D

From Kat Von D

From Kat Von D

I didn't really think ahead to consider other people might be there, but next to Kat was Dan and Rooftop!

From Kat Von D

From Kat Von D

Rooftop was hilarious. He wanted to hold Gabriella, and she was more than happy to say yes, lol!

From Kat Von D

This picture has such a funny story. Rooftop decided he wanted to propose and told Gabriella "Gabriella, will you marry me?".... Dan looks over and is laughing, I was cracking up.... and so this picture came to be!

From Kat Von D

From Kat Von D

In my normal Twitter addicted self, I send a tweet out thanking Kat... and much to my surprise I got a reply shortly after the signing was over!!!!!

From Kat Von D

Gabriella spent the whole way back to Shannon's house in awe of what had gone down. We got a goodie bag with a Wonderland Tshirt, High Voltage sweatshirt, art gallery book and Kat Von D sticker. It was such an amazing experience and I cannot believe that not only I won but that it was the same timing as our trip here to California for testing! How kismet was that?! It was another one of those moments that I was just basking in the awe of Gabriella and thankful to the God almighty that she was alive and well enough to do such a fun thing with me. It will forever go down in my momma book of amazing moments!

FULL PHOTO ALBUM LOCATED HERE

How time flies...

6 months ago today, a precious little girl made an early entrance into heaven. In spite of the grief her parents were feeling, they made a choice that saved 3 people's lives and enriched the life of another. One life being saved was our Gabriella on May 17, 2010.

Sweet Abbie, everything we do to give back and to be involved in various charities and organizations, we do in honor and memory of you. Every time Gabriella achieves something new or is able to sustain something normal, we are in thanks to you. And every time we hug our Gabriella, we are sending our love to you. Thank you for watching over our daughter and giving her new life, our guardian angel. Our gratitude and love for you will never fade.

March 18, 2007 - May 15, 2010

From

Our McNight Video on YouTube

I posted about our opportunity with the Ronald McDonald House of Phoenix event from last weekend, and wanted to share the video spot they showed to the audience right before we went live and gave our speech! Enjoy!!!! And make sure to call your local Ronald McDonald House to see what their needs might be. You will be surprised that their needs are small, manageable for even an average family, but make huge impact!


Head over to the YouTube page for this video and leave the Ronald McDonald House some comment love!

Our Walk for CHD

Hearts. It's kinda become my thing.

I'm a proud heart mom. I have found amazing people in the heart community to connect with. I am trying to become involved slowly in as many things as possible for support and companionship. Being around other heart moms is as comforting as a warm cup of hot chocolate on a cool evening. I love seeing other miracle children thriving and having those who lost their life too soon to a congenital heart defect imprint on my soul. On top of all of that, I feel so strongly about keeping Gabriella involved not only to be an example to others of the fight one little body can put up but also so she always knows there is a community out there that shares this common life experience... no matter what she does she will always have something different than others, but she is not alone. So you can say I'm a little passionate about hearts and those little heroes who fight!

We were the first team to sign up for the Congenital Heart Walk when it was first released! Gabriella's Sparkly Heart team grew and grew and by walk day November 7 we had 35 people and 5 doggies walk in red for Gabriella, Abbie and all of our heart friends! We raised a total of $1154 for the Children's Heart Foundation!!!!!!!!

We walked the 1 mile family walk, since we had a few strollers, dogs and kids to handle. Our sea of red shirts showed strength. Gabriella has been so strong since her diagnosis, but the strength of those people around us has always been the glue to keep us together, today being no different.

From CHD Walk
Everyone did great! The kids had fun and the doggies pooped out halfway through... lol! Something about this picture makes me tear up, probably because it represents in imagery the last 18 months. I will never quit pushing Gabriella to her potential just like she will never quit striving forward.

From CHD Walk

And the funnest shot of the day.... my girl crossing the finish line!!!

From CHD Walk

It was important to me to not just walk for Gabriella, but all of those we have gotten to know in our journey. We walked with a dozen heart balloons, each with names written on them in Sharpie for heart heroes.

From CHD Walk

We had balloons for angels gone to heaven Cohen, Ewan, Joshua, Cora and our own heart donor Abbie. We carried balloons for transplant miracles Logan, Mason, Ruby, Alexis and Gabriella. We carried balloons for those sweeties waiting for a heart Katy & Lydia. We carried balloons for those kiddos who have overcome surgeries or who are fighting strong right now Carlie, Mathilda, Owen, Grace, Laura, Bowen, Lauren, Braedyn, Evan, Lilly. And we released an extra balloon for all of those we have not met or got to know yet who are still heroes in our book! After we completed the walk, we released them to the heavens... sending thank you's and prayers to God for each CHD fighter.

From CHD Walk

Thank you to everyone who walked or supported our team! It was a great honor to do the walk and can't wait to see the event grow next year!!!!!

McNight to Remember

From RMH McNight

We were blessed back in August to be asked by the Ronald McDonald House Charities of Phoenix to attend their year end McNight to Remember fundraiser and share our experience with the organization with the financial supporters in attendance. There was no hesitation... as we have been so fortunate to have been part of the RMH since September last year! Saturday night was the big event, and we got all dressed up to go!

From RMH McNight

They had a silent auction, fancy dinner and live auction. All was just lovely, and the organizers of the event did such an amazing job putting it all together. They began a segment where they first showed a video of an interview done with us and many pictures of Gabriella. I was crying before we even hit the stage!!! I then spoke to the audience on our experience, right before they did the big cash call of the evening. I thought since I wrote it out anyways, I'd post my speech here!

Thank you all so much for giving us this opportunity tonight. It warms my heart to see so many people backing the organization we have been so blessed to be part of.

Over a 1 year period from September 2009 to September 2010, we spent 155 days as temporary residents of the Ronald McDonald House. Our daughter, at 4 years old, suffered a massive stroke just months after finding out she had a terminal heart defect. During her 21 days at Phoenix Childrens Hospital, the house on campus was home. It was a place to get quality rest, a much needed relaxing shower and a free delicious meal. Not to mention the comraderie among other aching parents. Above all, it was a place for us to spend time with our 2 year old son who was too young to understand what was happening. He still remembers playing on the playground and the Ronald statue sitting on the bench outside. Best of all, he remembers the rule of 'no drinks in the rooms'!

Afters Gabriella's discharge, we visited the house monthly, taking food, personal care items and household items we collected from friends and family. We were waiting on the heart transplant list, and could think of nothing better to do as we waited than to help those who had helped us through her stroke.

On May 17, 2010, my kids and I were getting dressed and heading to take a load of paper towels, toilet paper and personal items to the House in response to a Twitter update stating they were in need of those items. We never made the delivery because my daughters heart call had finally came. After a successful heart transplant, we spent over 4 months as a proud Ronald McDonald House family. We were active within the house, meeting families and even made a house meal. I feel like we just cannot do enough in repayment for all the house has meant to us. I can't picture out journey without all the house gave to us. My daughter not only survived, but thrived, and I fully believe it was because of the recovery period and quality of love at the House.

Tonight is beautiful, complete with fancy dresses and tuxedos and glamorous prize. But in my heart I stand here for the mom in sweatpants looking for a quick snack or moment of computer time before returning to her child in the hospital. I stand here for the siblings of sick babies and kids and that little feeling of normal the house gives them. I stand here for the fathers who have to work but have a place to be with his family on weekends. I say thank you to the house staff, volunteers, and YOU who's support makes this organization work and who make having an ill child that much easier through love and generosity. Thank you on behalf of all Ronald McDonald House families.

So I think it went well! I had a ton of people come up and thank us afterwards, but I felt undeserving of the thanks. It was my job, and one I wouldn't have traded the opportunity to have!

Here are some pictures of the kiddos and a few things from the night! And you HAVE to check out my little guy bustin' the moves at the dance party afterwards.... those kids had their dancing shoes on for sure!

Halloween 2010

Prepping this post, I went back and looked at Halloween 2008 and Halloween 2009 and cannot believe not only how much my babies have changed, but how different our lives were at each Halloween. 2008 we were none the wiser of the ride we were about to take, just living our typical life. 2009 we were just 2 weeks post-stroke and had no clue what the future held for our Gabriella. This year was definitely the best, not because we did anything amazing but because we were able to just enjoy it with our new outlook on life and 2 typical children! I have an overwhelming strong feeling this holiday season will be one for the memories. All holidays before were great, but our take on life is so different now.... it allows us to experience in a different way. And being that we aren't in a constant state of fear for Gabriella's survival like we were last year, this Thanksgiving/ Christmas/ New Year is forcasted to be amazing.

From Halloween 2010

This year we celebrates both Saturday and Sunday! Saturday we went out to Trunk or Treat with some friends. The problem with this was that since no one was out trick or treating, everyone and their cousin was at this event. We did the candy line and left right away. Though there were festivities and rides and food, it was way too crowded for this germaphobe!

We headed out to my sisters house and decorated pumpkins afterwards! My sister, her husband and their friends are very serious pumpkin carvers, so I felt a bit nervous to show off my lame carving skills. I mean, they use electronic carving knives. Hardcore. But the kids painted their pumpkins up and I carved one great looking Jack Skellington, if I do say so myself!

Halloween day we headed out to our church to be part of the Harvest Festival. This was some big deal! 2 concert stages, about 10 bounce houses & slides, about 40 carnival style games, a car show, a skate ramp and firetruck tours! The kids had a blast playing games and earning candy! We even came home with a new pet... a goldfish named Daisy!

After the Harvest festival we went out to Trick or Treat with my nephews for a while. After a long weekend of Halloween-ish fun, PJ finally melted down and we called it a night around 9pm.

I hope you all had a wonderful weekend whether you participated or not in Halloween! I love the day after Halloween so much.... all I can think of is fall weather (or Arizona's interpretation of it anyways), Thanksgiving and BLACK FRIDAY!

Enjoy these pictures from our weekend!

Puddles & Pizza

Since home, I haven't taken many pictures. Shame on me. But in all reality, there is nothing capture worthy in the waiting rooms of doctors... lol. I bet if I had the camera I wanted I'd take pictures of everything I could set my eyeballs on! We did have a major storm day (BIG deal in the desert) a few weeks ago, and I did what any other desert parent would. I let the kids run around in the rain. They had a blast! My Godson was also here so we just hung out on the back patio and tried to catch every raindrop we could!

From Collages

Since our bellies were missing the Gourmet Pizza Shoppe in Redlands, CA, we decided to make our own homemade gourmet pizzas! It was SO much fun.... but oddly enough the kids hardly ate theirs! We ended up having a neighbor over and sent some home with my mom so we didn't have too many leftovers!

From Collages

And randomly, here is a MONSTER I found on my sidewalk. This was the first alive scorpion I have seen in the 11 years I lived here. PETRIFYING!!!!!

From October 2010

From October 2010

Chicks with brains

We love these chicks with brains from Loma Linda.....

The transplant team assistant, Tricia and Maria, the transplant phlebotomist/ vampire

From Sept 2010

Cheri, the Transplant coordinator, who left the deepest footprints on our hearts. She was with us from the very first intake appointment at Loma Linda in August 2009 when we knew noone and nothing about transplant. She was always on the other end of the phone when I needed a friend or help. She was a comforting smile to visit us on the 5th floor and a loving friend through our whole process. We miss Cheri dearly!

From Sept 2010

Dr Shankel, the post-transplant clinic doctor who could pick out which one was Gabriella's donor heart blindfolded in a line of 20 kids. She found her CMV before she even got sick with it, she taught me SO much about post-transplant kids and was always a peace of mind to us.

From Sept 2010

From what I hear, it is still hanging in clinic. :)

From Sept 2010