Wednesday, February 16, 2011

The finish line

I told you last week about Ethans Run that I planned on participating in on Saturday.

Well..... I survived it!

I had never before ran a distance, but have been running on a treadmill and working out, building my endurance since October. I was fully intending to run a 5K (3.1miles) soon, but this 10K kinda happened!


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It was a struggle emotionally and mentally, for sure. Out of the first 3.5 miles, a little over 3 was uphill, and pushing Gabriella in a stroller while tackling it was a feat. Convincing myself I could do it was difficult, seeing as how I'm stubborn and that flows into my internal battles! We ran the first mile, half of the 2nd, walked the 3rd, ran half the 4th, all of the 5th, walked about a quarter of the 6th but finished off running. The hills for the first 3.5 miles made it hard to see what I could really do, but towards the end Gabriella kept cheering me on telling me I could win it. That along kept my legs moving!

By the 4th mile, Paul ran ahead of me and it was just Gabriella and I. I thought of all of the kiddos who are now smiling in pictures as I see updates on Facebook or blogs and figured if they could smile after all they had fought through, I could manage 91 minutes of running. I started envisioning Gabriella the day after transplant, walking the halls of Loma Linda. I had never had more of a hero than I did at that moment, and knew that if she could do that, I could take my healthy body and able legs to the finish line. But I had to think of myself, too. When I really step back to see what I managed to trudge through while I grasped onto faith that my daughter would live, laying sleepless at the foot of her hospital bed while she fought for her life post-stroke, faithfully making sure she met every appointment and therapy and worked on her words at home, never backing down from an insurance company or state service in getting Gabriella what she needed, and trying to be the best wife and mother to PJ amidst it all.... I could run this.

I finished in 91minutes. Not the greatest time ever, but the first 2 words mean more... I finished. And the best part was Gabriella hopped out of the stroller at mile marker 6 (adorning the adorable face of our friend Owen) and ran the last .2miles with me!

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I was so pumped after this run, that I took advantage of signing up for the Walk for Wishes, benefiting Make-a-Wish. We all know how much I love my Make-a-Wish and Ronald McDonald House Charities!!! I had fully intended to volunteer but made other plans for the weekend and never signed up. When my plans fell through, I was super excited to sign up and run the 5K there! The team I created is called 'Hearts for Wishes', and I made the team name more general so other heart moms or just friends could sign up! There is a 1 mile walk, 5K walk and 5K run.

Tuesday, February 15, 2011

Videos of Hope

There have been some great videos and articles come up this past week as Congenital Heart Defects Awareness week came to an end. While the National week of observance is over, CHD's continue to be just as prevalent in the lives of thousands of families around the country.

Mended Little Hearts of Phoenix put together a great video with pictures of local area CHD warriors and facts about heart defects. I encourage you to watch it, not only for the education of the facts, but to see the strength in these children. (And Gabriella pops up in there, too)



And another video and news article on our sweet friend Lauren. Lauren is waiting for a heart at Loma Linda. Her mom was one of the amazing women I met and grew a bond with while attending the support group at Loma Linda. Little Lauren is a teeny bundle of pure amazing, and we are praying that this family's faith and strength continue to provide Lauren with the support she needs to wait for the perfect heart.

Friday, February 11, 2011

Ethans Run 10k

A very last minute decision and encouragement from the mom of Ethan, Paul & I will be running a 10k tomorrow for hearts in Arizona.

Ethans Run is in it's second year operating, and all money raised goes to the Congenital Heart Center at St Josephs Hospital here in Phoenix to help raise awareness and support local families of heart babies and kids. Please read about baby Ethan on Ethans Run website!

Much of the reason we had decided not to do this run was financial, and also that 6+ miles seems a bit overwhelming! But we are now attending and will push through for and with all of our local heart friends!!!

Monday, February 7, 2011

Genetic testing results

In November we went to Loma Linda to have her 6 month follow-up done and have genetic bloodwork drawn. We had hoped her bloodwork would give us some answers on her condition. She had something they rarely see, Hypertrophic Cardiomyopathy with Restrictive presentation, and questions were out there as to whether or not it was genetic and what it could possibly mean.

I got a call today from the genetics doctor at Loma Linda. Everything is still in the very early stages of gathering some answers, but I will share a few things here. Gabriella did have a change in the gene associated with cardiomyopathy, meaning she was born with the mutation and it was not anything that happened during my pregnancy that caused her condition. That was a slight relief, because I naturally had little bits of me that wondered. The issue with this gene, which I will call the T gene because the code names won't mean anything to all of you, is that it is the type of mutation that shows in adult onset cardiomyopathy, in ones 20's or 30's. So why did Gabriella fall into heart failure at 4 years old? This take us to a second gene mutation they found, we will call the M gene. On file, this combination of mutations has not ever been recorded in a case of cardiomyopathy. Given that they have not seen this combined, there are no statistics or information available. The genetics doctor says this causes her to consider that the M gene mutation caused the T gene mutation to progress, causing Gabriella to fall into a condition she shouldn't have experienced until later in life and at a much less severe level. This M gene, in my understanding, is like an instigator that made the T gene issues bigger than they needed to be.

The question is, where did the T gene come from, and is the M gene present in the parent that the T gene is present in? This is why Paul and I will now go forward with testing. Knowing which one of us, if either of us, carries it, we can better prepare not only our future but the future our son PJ and of the children on either given side of the family.

The other question, the one much harder for me to swallow, is that with this combination of mutations still in her blood, is her transplanted heart at risk? Doctors words to my question today, "it is possible." She did reassure me that Gabriella is going to be closely monitored for the rest of her life, with or without this information, but this may just mean we need to be a bit more conservative in her testing and monitoring to catch an early onset of HCM with Restrictive presentation again. The only thing this says to me is RISK. IF this did happen, the chances a transplant board would approve her for transplant listing are slim, given she has a condition that is chronic and it would happen again to a new heart. On the flip side, there is an equal chance this will not happen again to her transplanted heart and we will move forward as if she is solely a transplant case.

Now onto my selfish emotional moment.... The hardest part of this is, as most of you heart moms or moms of medically fragile kids know, I have dedicated my life to not just my kids but to this condition I have no control over but must maintain. I give 100% of myself to ensure Gabriella has the possibility of moving through the steps of life like any other kid her age. I try and do everything possible so she does not feel the exceptions that are in her life like the medications, bloodwork, side effects, invasive frequent doctors visits, therapies, etc. I want her to not worry about anything else other than just being a kid, like other kids do with ease. I want her to worry more about the new Justin Bieber movie or the super cute new headband she just got like the average 6 year old than the next ECHO or blood draw. While it seems simple in the grand scheme of things, it takes constant work on my end to always make sure everything is in line. While most parents work hard to make sure their kid has all the opportunities life has to offer, parents of kids like mine want that just as bad but have to jump through hoops of fire to achieve it. I am not complaining and wouldn't change this life for anything, but it is in fact difficult, I will not lie. Then, when you think you are in a groove of maintaining everything, you are told something that yet again changes the game, like I was today. My whole life invested in this- I silently carry the burden of the possibilities of her future while everyone enjoys her success of today. I praise God for the blessing we have been given, with a constant thought of what might be.

The biggest concerns up until today have been the side effects of the medications over the future, kidney function, possible coronary artery disease or losing this heart to slow rejection... I felt I was over the fear of such an uncontrollable and deadly disease taking over her heart, since the diseased heart is gone. Now, I have to always wonder if or when she might be faced with this defect again. No matter what else we find in her bloodwork, no data will tell us God's will. We must use this information as a tool for preparation. But given that being in my position, a heart mom, who I am now... this will always linger in the back of my brain.

It is impossible to explain, I am noticing. The burden and blessing of information... the way it changes everything for me as her mom knowing it is possible to come back just as much as it is that it won't happen. Though any more information won't change what is in Gabriella's bloodwork, I will be sure to update any new information we find about the origin of this CHD.

Congenital Heart Defect Awareness Week

This week spotlights the need for awareness and increased funding for research for Congenital Heart Defects (CHD's). Did you know that it was CHD week? Probably not... because awareness for this #1 cause of death in infants is not widely advertised.

Our Family in March 2010- From Portraits

Every year 40,000 babies are born with a CHD. Half of them will need an invasive heart surgery sometime in their youth, while thousands will never make it to their first birthday and thousands more will not make it to adulthood. Almost half of those who have a congenital heart defect have a more complex CHD and will also suffer from neurological or developmental disability, much like my Gabriella. There are 40+ kinds of CHD's recognized but no prevention or cure for any of them.

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Gabriella, September 2009, Stroke survivor


Early screening can help save infants born with an undetected CHD. By simply requesting Pulse-Oximetry while in the first days at the hospital, a congenital heart defect can be detected. Efforts of the heart community, and especially a sweet friend Kristine, and one day this will be a requirement.

Gabriella suffered from Restrictive & Hypertrophic cardiomyopathy.... which is the leading heart disease leading to heart transplants. It is also the leading cause of sudden cardiac death in adolescent athletes. It is silent and unpredictable, unless increased screening becomes normal practice. We were given the opportunity to find Gabriella's condition because of an attentive pediatrician, but that is not always the story for all cases.

May 2010, Gabriella's Heart Transplant

The best news though is that just recently, the statistics show that 50% of the CHD survivors are adults, meaning children and youth are growing and living longer with their CHD's! Walking past you in the mall, sitting by you in the theater, there are 2million people, adults and children, walking around with a CHD. Did you know, my sister is a CHD survivor adult (minor CHD) who is a dancer and happily married 25 year old woman. CHD lives everywhere.


Spread the word, share this blog with your friends. With medical advances and increased awareness, more and more people will survive their congenital heart defect and live to do great things! By the grace of God, our Gabriella is one of them!!! Pray for the warriors fighting through their CHD, and pray for the angels gone to be whole in heaven.

(statistics taken from http://www.chfiowa.org/chd_facts.htm)

Wednesday, February 2, 2011

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...

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Tuesday, February 1, 2011

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.

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