Saturday, May 30, 2009

Noteworthy net reading

There has been more blogs and emails and calls then I can acknowledge, but I wanted to share a few of the things done to acknowledge my Gabriella.

Let's call it this weeks version of Stumble Saturday. :)

My best friends perspective on life and our relationship through it

My friend Corey squeezes Sugar Bear closer

Megan loves strong from a distance

My church organizes our media coverage

Friday, May 29, 2009

Stanford/ Lucille Packard Called

Just an update......

Wow. I was completely taken off gaurd when my phone rang yesterday evening. After hearing from Loma Linda that morning, more confirmation that they agreed it was irrepairable, I had lost any hope in hearing from Stanford Medical any time soon. Kinda a 'hopeless cause' kind of thing....... Well, I heard from the Cardiologist who heads up the heart failure and cardiomyopathy sector of Stanford Medical right before I left work. He was a very soft spoken man, intelligent as can be even in his 'Hello'. Unfortunately, I have no reports from him as he did not receive her catheter disc with the paperwork so was calling me to reassure m he was looking at her case and was waiting on the disc. But he will be the one to review and the only man who could have any chance of repairing her defect that 40 other doctors have now said was irrepairable. So many concerns come with the idea of repairing..... because it would only repair the bridging, not the cardiomyopathy. They said it 'might' stop the cardiomypoathy from progressing, but no gaurentee. OR if they are unsuccessful, the assistive device she would be on until she received a transplant would have a 50% chance of causing neurological damage. So many questions, so many concerns, so many unknowns, so much waiting.

Thursday, May 28, 2009

Loma Linda Called

I got a call from Loma Linda today. The transplant coordinator over there was such a sweet and gentle sounding man. He said he worked closely with Sharon, the transplant coordinator here, and that we would begin compatibility testing as soon as the other hospital was done reviewing her chart. He assured me they would want to see her, but we could do most preliminary testing over here in Arizona and get her on the donor list before we had to move there. It really wasn't a phone call with loads of information, but it was reassuring to finally hear word from them, that they reviewed her chart, agreed with the diagnosis and that transplant was the only treatment in her case. The reassurance and confirmation from them firmed the faith I had in my panel of 20 doctors here. I was prepared to wait 2-3 weeks like they told me it would be, but in a weeks time they got back to me.

We are still on cruise control. My best friend asked me if I was impatient waiting. I told her not really. I would ideally like to freeze time right now and not have to face whats to come, but I know its inevitable and has to happen. I am soaking in all the time I have as a normal family right now, and will take each step as it comes. Doesn't mean I'm not fearful of something happening in the interum, but I know God will protect us and the sensitive timing of the situation to make sure Gabriella is tended to and given new life.

Amazing Love... the Spaghetti Fundraiser

There really are no words, but my best friend summarized it best when she called it 'Amazing Love'.

We got there a bit early to get all set up, and our family and friends were already hard at work. Tables lined the walls, one area with more sweet and goodies than an army could handle, and another with the most fantastic items to be auctioned off. The sign out front said loud and proud "Gabriella Vega Fundraiser". Before we could get settled in and let the clock hit 5p, there was a line outside as if there was a concert going on! People poured in left and right. Family, friends, coworkers, strangers who saw on the news and firefighters. There was a slim supply of chairs in comparison to the number of people who came to show their love and support. It was like a life reunion, and a fuel-up for our hearts.

3 news interviews and lots of greeting absorbed my attention, and the loving and supportive words every single soul gave me are words I will never forget. Not really many people 'feeling bad' for us, but more so people giving support and prayers. Positive..... it's an infectious tool. It is impossible to walk away from what we did Saturday night without feeling an overwhelming security blanket of love covering us and hope that the future will only hold positive outcomes. We regained hope in community, were reminded of the love people have in their hearts, and was given the opportunity to know we had people who were going to keep Gabriella on their mind everyday.

I think with the recent judgements and my new-found Internet fame (oh my..... how do you do it Matt?), it would only be fuel for the evil to announce the grand total love offering that was given to us Saturday night, but I would love to tell anyone who wants to ask me on the side. The important thing though is that every penny raised will forever be a part of my Gabriella. That heart that is put into my child will have a piece of so many people, whether they donated funds or love. She will be given new life through all who love her. From the quarter the little boy handed to Joyce to help pay for the heart, to the perfect stranger who gave a large sum for my sweet girl, thank you. From the bottom of my heart, and the bottom of Gabriella's new one.... thank you.



My super sweet cousin Joey took pictures and posted them on his Flickr account. Rather than loading them all into Photobucket and posting them here, I figured it would be easiest to just direct you to his Flickr! Please feel free to comment on his work. He did an amazing job capturing the event for me!

More pictures to come this weekend. I have to compile more from my camera and besties camera!

Wednesday, May 27, 2009

Negativity

(To all the friends, family and strangers who have been supportive and amazing, please feel free to bypass this entry. I love you all.)


It was bound to happen. I figure I'd get this blog entry out of the way first and leave negativity to sleep with this entry before I go on to post all the positive and amazing things I have to talk about.... Because anyone who knows me knows I will go to ANY extent necessary to defend and protect my children. ANY.

I was directed this morning to one of the many articles about my little girl. This one, however, was loaded with some hatred and criticism.... judgement at it's finest. I have come to realize that even in the situation of a dying child, there are those people out there so hopeless and full of hate, they cannot even sympathize. I am assuming those people with hateful words probably do not have children of their own, and cannot grasp the concept of being willing to do anything for your child.

Anyone who has spent time to read back on my blog or that knows me prior to this knows there are some factors in our past that could be grounds for someone to judge us. I am going to be completely candid here. Yes, we did go to Disney a few times a year. Yes, we short-sold our home at the end of 2008. Yes, we have wanted to live in California for some time now. Those 3 things seem to be targets for criticism among strangers who feel a need to pick apart our current path in life, and for all I know may even give those who know us well some unease as well. But to call me a "train wreck" is something I will fight anyone on. Given the last 18months of our life, I will take credit for keeping it together for the most part. I know plenty of people who in my position in life would have just given up on it all by now. That claim, that judgement of being a "train wreck", I deny.

I honestly don't feel I should HAVE to justify any portion of our past, but since there are some out there who feel it is okay to disregard the life of a child through judgements, or to the person who insinuated that my daughters illness was karma.... here you go.

Grounds for judgement: Moving to California? No.
I have always wanted to live in California, but never on these terms or in this situation. I wanted to go there on a job promotion with my husband and where I could work a part time job, where we could live comfortable. Read that in my back-blogs, instead of picking out the particles of it you want to pick at to make your judgements sound juicy. Where we could go and be healthy and live a normal life, visiting the beach and Disneyland on a warm weekend without worry. Having the ability to drive the 6hour drive back home anytime we wanted to to see family. NEVER did I imagine or would I have chosen we would have to go like this, or that we would be forced over there on the minimal salary he makes, possibly separated since he may have to stay here to work until he can relocate over there, and where I couldn't even get a job if I wanted to because my baby is sick. My life in California now will consist of the inside walls of hospitals and the Ronald McDonald house until she has her transplant. Our life in storage while we move into a small apartment, not going to the mall or Target on a warm weekend, let alone Disneyland, because of her weakened physique and immune system. Maybe going to the beach for a day, but without my daughter being able to jump waves or dig in the sand and at constant fear she will get skin cancer- a common risk with transplant patients. All I can think about now is moving back to Arizona when she is healthy enough to do so, because life is different now than it was last year when we wanted move there. So someones comment I read today about being able to move there now and live my "dream life" with the assistance of people's hard earned donation money is a sickening and morbid comment to make.

Grounds for judgement: Disney trips? No.
We go to Disney a lot. It's what my children love, and we love taking them. People obviously need an explanation as to why or how we went so often, or even a lesson on how to go to Disney with a family of 4 for just a couple hundred dollars. Last year, we went early in the year and had an amazing time. That trip was well planned out, budgeted for and saved on due to our experience on going with a small budget. Right after our first trip, we unexpectedly bottomed out with many difficult instances we were faced with- those instances I feel no need to go into detail with but please be assured they were not expenses we were prepared for. Those instances led into us falling behind in income and causing struggle with our mortgage. We had zero intention of going to Disney again for a LONG time because we initiated the short sale process on our home, when my mother offered to take us and pay for our December trip as a Christmas gift for us, along with renewing our annual passes for the next year. Our Christmas trip was tradition and something she was not willing to let us miss, and for that I am now grateful. Especially since all of those things we are now being judged on occurred before we even had a second to consider something might be wrong with my daughter. She was a normal healthy 4 year old until March 2009.

Grounds for judgement: short-sale? No.
The short-sale was the best thing we ever did. We were behind on our mortgage, and would have killed ourselves attempting to catch up on it. Looking back now, getting out of that house was the best thing possible. It put us into a position today where we are able to tend to Gabriella's health better. We have saved so much money renting and living closer to our jobs that we are completely current on bills, have paid down debt slowly, and have some money in savings (of our own, not donations). We have also saved 2 hours a day of driving- that time well-spent with our kids. We also are not stuck in a home we would probably have to foreclose on anyways since we have to relocate and the value is so low, because dealing with a foreclosure while focusing on my daughters medical status is not something I am going to want to deal with. We were blessed to be able to short-sale the home, sparing our credit from a foreclosure, and also getting us out of the obligation come time to move. God prepared us for this in even the oddest ways, our home being one.

Just as we go to Disney often (and we have gotten so good at going cheap), some people go to Baseball games and drop over $100 on tickets alone plus parking and food in one afternoon, which we only do if we win tickets or are given them. Some people buy designer purses or clothes and we shop at Target and Old Navy and I sew my own bags. Some people concert hop, seeing their favorite bands and going a few times a year to concerts that cost over $50 a ticket. The last concert we went to, the tickets were won on the radio by my sister. So if anyone is truly that concerned or lacking in trust whether donations will go to my daughters heart or to "frivolous" spending, then I urge you to hold onto your funds for a child you feel deserves to live more than mine does.

I guess in my blog I should be more specific about the generous and amazing family we have that actually do those kinds of things for us. THAT is Karma. Because before WE became the charity case we would have done anything for anyone, just as people are reaching out to us for right now. Unfortunately, once I post this, I am going back in time on my blog and making private the posts I feel are being violated and judged. Not to make us look better, because all the judgements have been spelled out here, but because I feel the less tools you give to evil people, the harder they will have to work to get to me.

We didn't ask for any of this money or fund-raising. We asked for prayers and love. The money and fund-raising was all initiated by others whether they were the ones facilitating it or just the ones wanting to give. And whether people were giving their financial support or not to us right now, we would still be the people we are and would still do whatever we needed to to get my daughter a new heart. The $$ donated has been out of love and hopes and TRUST, and the donations from negative or doubtful people do not need to be part of my daughters heart.

All I can give to anyone is my word that this loving money will be locked away in a Trust until we are in desperate need of it. I am still working now, and my husband is working overtime, to be able to save enough of our own money for as long as we can. I am slowly selling items we have stored away for no reason to help assist in our daily living for when I do leave my job, so we do not tap into our loving well of financial assistance until it is time for her transplant. We are still paying every single copay, medicine and expense of our own family, as well as cutting back on luxuries to reduce expenses for day-to-day living.

Be prepared, negative people. We are going to the Zoo, Aquarium, Disneyland, ocean, etc..... some of it as a gift from people and some of it on our own money, none of it from the generous donations given to us. Right now it is about building memories and living life. Filling photo albums and fulfilling my daughters requests.

Every time we go to visit our doctors in SoCal, we will stop by in Disneyland, and I will post pics after. We will use the annual passes my mom bought for us to get in, we will Priceline a 2 star hotel for $25 that night, and we will pack a sack lunch. And when we are sitting on Main Street, and my daughter is smiling ear to ear because SHE is in the most magical place in the world enjoying those so very precious and few moments she is 'just Gabriella' and not a transplant patient, I will say a prayer for the heart of those who feel she should be deprived of that moment.

If she died tomorrow because of this, I am sure you would regret your judgements.

My husband quoted it best... "When God is giving His blessings, the Devil is at his best!"

ETA: And now the validity of her medical situation is being doubted. I give up, I truly do. Doubt me. Judge me. Just leave me alone if you aren't in support. My daughter deserves a mom who can focus on her health and not dealing with hateful hearts.

Friday, May 22, 2009

In the media.... channel 12

Another wonderful interview!!!!!!!!!!!!!!!!! What an amazing community we live in!!!

Channel 12 News Story on Gabriella

In the media.... Channel 3

Channel 3 was amazing enough to help us get the word out about the fundraisers and Gabriella's condition.

Here is a link to the information: http://www.azfamily.com/ontv/gdaz/stories/phoenix-hotline-052109.21a82199.html

And a link to the video: http://www.azfamily.com/video/newsat9-index.html?nvid=364262

If it asks to create an account to view, just select No Thanks.

Comedy Fundraiser last night

Last night was just amazing.

A cousin of ours put together this amazing event to help raise money for our Gabriella. When we got to Baja Tillys it was like a life reunion. It seemed like there were so many people there I haven't seen in so long and I didn't even have a chance to talk to everyone!

There were so many comedians that performed, I lost count. Our cousin Danny did a fantastic job Hosting the event and that guy is FUN-NY!

All those people, banning together, raised such an amazing, loving donation to my Gabriella. Every dollar donated will be used for her and the process of getting her a new heart, and I thank everyone for their loving contribution to that!

Hope to see everyone at the Spaghetti Dinner/ Fundraiser tomorrow night. May 23 at 5pm. Knights of Columbus Hall in Chandler, AZ. $5 a plate and silent auction with items signed by Larry Fitzgerald and Danny White specifically for this event, along with many other signed sports memorabilia and fantastic items!

Thursday, May 21, 2009

Cat's out of the bag..... so meet us!

I have always kept the names of my family private on my blog, not posting my email address or even putting the city we lived in...... giving my family pet names to protect privacy. With all the recent exposure for my BabyGirl, it is near impossible to mask it further. I have added contact information to my profile, and feel there are more out there to do good than harm!

Meet us. I am Kristi Vega, wife to Paul for 7½ years and mother to Gabriella and Paul Jr- PJ.

Photobucket

I have also reserved a domain name for people to more easily remember my blog address. It is www.GabriellasHeart.com. It redirects right back to here, but it easier to remember!

We are all home nursing the tummy bug today. All except Daddy, who is at work swearing to drink sanitizer.... LOL. Please pray for some ailment freedom for us! We have tons of fun stuff happening starting tonight and we need to be healthy and enjoy it!

Our radio segment ended up airing at 720a and due to sick tummies, we all missed it. They did however post a news article online so I urge you to check them out!

Wednesday, May 20, 2009

In the media...

I was interviewed by a local radio station yesterday. They wanted to do a short segment on BabyGirl's situation and promote the fundraisers this week!

Live streaming on www.KTAR.com OR tune locally to 92.3fm at 620a and 820a on Thursday, May 21.

Also, we are being interviewed by Fox 10 news on Saturday, May 23 to be aired at the 5pm news slot!!!

More to come too, I hear!

Tuesday, May 19, 2009

Thank you to Noah for posting a verse on her blog that is something I have been practicing over the last 8 days, and think so many others could benefit from. It is more than just physical healing. And the different translations all build the perfect message.

James 5:16

(NIV) Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.

(The Message) Make this your common practice: Confess your sins to each other and pray for each other so that you can live together whole and healed. The prayer of a person living right with God is something powerful to be reckoned with.

(NLV) Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results.

Monday, May 18, 2009

What exactly is wrong with BabyGirl?

Along with a few others questioning 'what exactly is wrong with BabyGirl?', I had a sweet dear friend email me this evening. She messaged me with some questions because as she looked at the pictures of my beautiful, seemingly healthy 4 year old, she could hardly bear to believe something this huge was wrong with her. The hardest part of every second of every day for me is exactly what she experienced tonight. It makes you doubt whats going on because you just don't want to believe it by looking at her. But I have to keep reminind myself that ignorance is not bliss, and I will do whatever I have to do to make sure I watch that 4 year old turn 14, and 24 and 24.....

I found a wonderful, straight forward article that explains the main problem with BabyGirl's heart. She has a defect called Myocardial Bridging, a coronary artey buried under muscle. That defect caused a very rare disease of the heart, called Restrictive Cardiomyopathy. The parts of it being genetic are void, since the RCM is a result of another defect. Here is the text of an article from the American Heart Association explaining, point blank, what it is. And why a transplant is the only way to ensure BabyGirl makes it to her 10th birthday.

RESTRICTIVE CARDIOMYOPATHY
Restrictive cardiomyopathy (RCM) is a rare form of heart muscle disease that is characterized by restrictive filling of the ventricles. In this disease the contractile function (squeeze) of the heart and wall thicknesses are usually normal, but the relaxation or filling phase of the heart is very abnormal. This occurs because the heart muscle is stiff and poorly compliant and does not allow the ventricular chambers to fill with blood normally. This inability to relax and fill with blood results in a “back up” of blood into the atria (top chambers of the heart), lungs and body causing the symptoms and signs of heart failure.

Within the broad category of cardiomyopathy, RCM is the least common in
children, accounting for 2.5–5% of the diagnosed cardiomyopathies (occurs in
less than one per million children). The average age at diagnosis is 5 to 6
years. RCM appears to affect girls somewhat more often than boys. There is a
family history of cardiomyopathy in approximately 30% of cases. In most cases
the cause of the disease is unknown (idiopathic), although a genetic cause is
suspected in most cases of pediatric RCM.

Signs and Symptoms of RCM

In children the first symptoms of RCM often seem related to problems
other than the heart. The most common symptoms at first may appear to be lung
related. Children with RCM frequently have a history of “repeated lung
infections” or “asthma.” In these cases, referral to a cardiologist eventually
occurs when a large heart is seen on chest x-ray. The second most common reason
for referral is an abnormal physical finding during a doctor’s examination.
Children who have ascites (fluid in the abdomen), hepatomegaly (enlarged liver)
and edema (fluid causing puffy looking feet, legs, hands or face) are often sent
to see a gastroenterologist first. Referral to a cardiologist is made when
additional cardiac signs or symptoms occur, a chest x-ray is found to be
abnormal or no specific gastrointestinal cause is found for the edema or
enlarged liver. When the first sign of the disease is an abnormal heart sound,
or signs of heart failure are recognized, then earlier referral to a
cardiologist occurs. In approximately 10% of cases, fainting is the first
symptom causing concern. Unfortunately, sudden death has been the initial
presentation in some patients.

Diagnosis of RCM

Restrictive cardiomyopathy is among the rarest of childhood
cardiomyopathies. Its diagnosis is difficult to establish early in the clinical
course due to the lack of symptoms. Therefore, in many cases, this diagnosis is
made only after presentation with symptoms such as decreased exercise tolerance,
new heart sound (gallop), syncope (passing out) or chest pain with exercise.

Once suspected, there are certain tests that can help confirm this
diagnosis. An electrocardiogram, or EKG, which records the electrical conduction
through the heart, can be very helpful. This can show abnormally large
electrical forces from enlargement of the atria (upper chambers) of the heart.
An echocardiogram, or ultrasound of the heart, can provide additional clues to
help make this diagnosis. Generally, in children with RCM, the echocardiogram
shows marked enlargement of the atria (upper chambers), normal sized ventricles
(lower chambers) and normal heart function. In more advanced disease states,
pulmonary artery pressure (blood pressure in the lungs) will be increased and
can often be estimated during the echocardiogram.

Cardiac catheterization is usually the next procedure done to confirm
the diagnosis. During this procedure, a catheter (thin plastic tube) will be
slowly advanced through an artery or vein into the heart (while watching its
course on a TV monitor) so that pressures within the heart chambers can be
measured. These measurements often show significantly elevated pressures during
the relaxation period of the heart (when it fills with blood before the next
beat) and varying degrees of increased pulmonary artery pressure (which can
confirm the echo estimates) in the absence of any other structural heart
disease. In very rare cases, based on clinical symptoms and prior laboratory
evaluation, a cardiac biopsy may be performed. This involves removing tiny
pieces of heart muscle for inspection under the microscope to search for
potential causes of this condition (such as amyloidosis or sarcoidosis,
which are common causes of RCM in adults but rarely in pediatric patients).

Finally, since childhood RCM is often genetic and in many cases will be
inherited, once this diagnosis is established, your doctor will likely request
that parents, siblings of the patient and sometimes other close relatives be
screened with an echocardiogram to rule out the presence of this disease in
other family members.

Causes of RCM

Although the cause of RCM is not known in most pediatric cases, there
is some scientific evidence suggesting that individual genetic “mutations” may
be a cause in some cases of RCM in children. For a greater understanding of the
basics of human inheritance patterns and a more detailed discussion of the
potential genetic causes of RCM, the reader is encouraged to read separate
sections entitled “Overview of Inheritance” and “Genetics of Cardiomyopathies”
printed elsewhere in this brochure.

Current Treatment

Currently, there are no therapies that can “cure” RCM; however, some
treatments are available that can improve symptoms in children with RCM. The
choice of a specific therapy depends on the clinical condition of the child, the
risk of dangerous events and the ability of the child to tolerate the therapy.

Medical Therapies to Treat RCM and Associated Heart Failure

Some children with RCM have signs and symptoms of heart failure due to
the abnormal relaxation properties of the heart muscle. The most common types of
medications used to treat heart failure under these circumstances include
diuretics, beta-blockers and occasionally afterload reducing agents.

Diuretics, sometimes called “water pills,” reduce excess fluid in the lungs
or other organs by increasing urine production. Diuretics can be given either
orally or intravenously. Common diuretics include furosemide, spironolactone,
bumetanide and metolazone. Common side effects of diuretics include dehydration
and abnormalities in the blood chemistries (particularly potassium loss). In
patients with RCM, diuretics must be used very carefully and given only in doses
to treat extra lung and abdominal fluid without inducing excessive fluid loss as
this may cause symptomatically low blood pressure.

Beta-blockers slow the heartbeat and increase the relaxation time of the
heart. This may allow the heart to fill better with blood before each heart beat
and decrease some of the symptoms created by the stiff pumping chambers. Common beta-blockers (taken by mouth) include carvedilol, metoprolol, propanolol and atenolol. Side effects include dizziness, low heart rate, low blood pressure,
and, in some cases, fluid retention, fatigue, impaired school performance and
depression.

Anticoagulation Medications

In children with a heart that does not relax well, there is a risk of blood
clots forming inside the heart possibly leading to a stroke. Anticoagulation
medications, also known as blood thinners, are often used in these situations.
The choice of anticoagulation drug depends on how likely it is that a blood clot
will form. Less strong anticoagulation medications include aspirin and
dipyridamole. Stronger anticoagulation drugs are warfarin, heparin, and
enoxaparin; these drugs require careful monitoring with regular blood testing.
While variable, common side effects of anticoagulants include excessive bruising
or bleeding from otherwise minor skin injuries, interaction with other
medications and, for warfarin, fluctuations in anticoagulation blood levels
caused by changes in daily dietary intake. Information regarding which food
groups can significantly affect warfarin levels can be obtained from your
cardiologist.

Surgery for Restrictive Cardiomyopathy

No surgery has been effective in improving the heart function in
restrictive cardiomyopathy. Heart transplantation is the only effective surgery
offered for patients with RCM, particularly those who already have symptoms at
the time of diagnosis or in whom reactive pulmonary hypertension exists.

HEART TRANSPLANTATION

Since there are no proven effective therapies for children with RCM,
transplantation is the only known intervention for this disease. This is
especially true in cases where evaluation has demonstrated the presence of
pulmonary hypertension, which can be fatal if not treated. For children with
RCM, heart transplantation can address both the abnormal heart function as well
as associated pulmonary hypertension. A heart transplant offers the child with
RCM the chance to return to a normal lifestyle. While a donor heart can cure the
symptoms of heart failure and greatly improve survival, it is a major operation
with considerable risks and long-term complications. Once a transplant is done,
other concerns arise, such as infection, organ rejection, coronary artery
disease, and the side effects of medications.

Prognosis

The long-term prognosis for children with RCM varies depending on the
symptoms at the time of diagnosis and the presence of pulmonary hypertension.
Children with RCM should be watched closely for the development of excess fluid
retention, abnormal heart rhythms, blood clots inside the heart or evidence of
progressive pulmonary hypertension.

As discussed previously, RCM is rare, and there is limited information
on this disease in children. Once diagnosed, approximately 20% develop
thrombotic or embolic events (blood clots). The average two-year survival rate
for children with RCM is 45–70% including those treated with heart
transplantation. Survival increases significantly for children who are
transplanted. Irreversible pulmonary hypertension (high blood pressure in the
lung vessels) has been the only major risk factor associated with poor outcome
among these patients. Therefore, it is important that transplant be considered
sooner than later to optimize long-term survival, as the waiting time for a
donor heart can be unpredictable. Finally, a child with RCM should be closely
monitored at a center with expertise in pediatric heart failure, cardiomyopathy,
arrhythmias and transplantation in order to ensure rapid response to any
worsening of his or her condition.

Living with RCM

The diagnosis of RCM affects many areas of a child’s life. The following sections outline the general approaches to living with RCM. It is important that specific recommendations are developed by the team caring for the child with restrictive cardiomyopathy.

Physical Activity
Children with RCM are not allowed to play competitive sports because of the possibility of a sudden collapse or increased heart failure. A competitive sport is an organized team activity for which training is required. A child with restrictive cardiomyopathy and no heart failure symptoms can be allowed to perform recreational athletic activities, also known as low-dynamic or low-static sports, in a non-competitive situation. Specific activity recommendations should be individualized by the treating cardiologist.

School
The intellectual, psychological and social benefits of attending school cannot be overestimated in the child with RCM. Adjusting medication schedules so they do not interfere with school activities, discussing safe activity levels with school personnel, and providing tutoring to maintain academic performance are important interventions that can help a child to stay in school and keep up with their peers. Often close communication between the parents, medical care team, and the school nurse can help to keep a child up to date in school.

Friends
Every effort should be made to allow a child with RCM to spend time with friends. The child should also be allowed to participate in recreational activities whenever possible. However, an effort should be made to avoid contact with those who are acutely ill with fever, even though many children with RCM are able to tolerate upper respiratory tract illnesses (common colds) well.

Psychological Issues
Adjusting to having a chronic illness is stressful for the child and the family. The child’s reaction to having RCM often depends on the stage of the child’s development. Discussions about the disease should be tailored to the specific concerns of the child. Child-life professionals and pediatric psychiatrists are important resources to help
children cope, and their services are often available through the treating center.

Family
The impact of a diagnosis of RCM is felt throughout the child’s immediate and extended family. It is important for parents and other caregivers to realize that they are not alone in feeling the weight of responsibility that comes with taking care of a child with a chronic illness. Anticipating and/or preventing the stress imposed by an illness is an important part of caring for the child and family and personnel at the cardiomyopathy center can help identify issues that can lead to
increased stress. Practical solutions to problems giving medications, keeping track of appointments, and maintaining normal family life can often be found through discussions with nurse clinicians, the social worker, psychiatrist, and other parents of children with RCM.

Diet
All children with RCM should follow a healthy diet. The recommendations published in 2005 by the United States Department of Agriculture (USDA) can be found at the following website address: http://www.mypyramid.gov/.


In children with RCM and extra lung and abdominal fluid, a low-salt diet is
recommended to avoid excessive fluid retention. Some children with heart failure
may not grow well. In these cases, a diet that increases calories is
recommended.

Children who are taking some medications may have low levels of
magnesium or potassium and a diet that has a higher amount of one or both of
these two electrolytes may be recommended. Some children with severe heart
failure can retain extra body fluid, and it may be necessary to limit the amount
that a child can drink to prevent fluid from accumulating in the lungs.

Health Maintenance
Routine pediatric care is important for children with RCM. Regular well child visits and standard childhood immunizations should be performed. The influenza vaccine should be administered on a yearly basis. Children under age 2 should receive Synagis for protection against respiratory syncytial virus. A medical alert bracelet is an important safety measure for children with RCM. In the event of an emergency, these bracelets allow medical personnel to know details about a child’s illness, especially if a family member is not available.

What Does the Future Hold for RCM?
Slowly, progress is being made in our ability to diagnose RCM in both the clinical and molecular arenas. However, much additional research is needed in this field. Areas of research to be highlighted over the next decade include: 1) better understanding of RCM as a disease process and the characteristics of the disease as they relate to
outcome, which will lead to better management strategies; 2) increased clinical
trials which will lead to new drug development and more effective therapies; and
3) molecular identification of novel genetic mutations as well as more precise
diagnostic genetic testing/screening which will result in more accurate
diagnosis.

It is the expectation of the medical community that the data derived from exploring these avenues of scientific research will translate into a clinician’s ability to tailor medical therapy based on a given child’s precise diagnosis. Achieving this goal over the next couple of decades will represent a large milestone in the field of pediatric cardiomyopathy and will, hopefully, improve the ongoing care and prognosis of children afflicted with these heart muscle diseases.

1,119

I have been following the story of Matt and Maddie for a year now. I had a friend turn me to his story in May 2008 and spent an entire day weeping at my desk as I back-read his blog and his story of loss and survival. He has become a highly-popular single dad has so much support. I always thought it was so amazing how many people rallied around him, in person and virtually, and right now I am experiencing a taste of that.

1,119 is the number of hits my blog got in the last 7 days. Insane. My little blog that I wrote as a way to release my mind and talk about random musings has received 1/3 of its lifetime activity in 7 days. Thank you, to everyone who cares and to everyone who loves.

This weekend was our ONE chance at deciding how we are going to handle this. We had our 5 days of grieving the news of BabyGirl's results, but we were given 2 whole days to spend, the 4 of us together, and make of it what we wanted to. We had one amazing weekend. We vowed to do nothing but normal stuff. We did, but we did SO much normal stuff, it created an abnormal amount of exhaustion. BabyGirl went to dance class Saturday morning, and we went right from there to play at the splash park at Espee Park in Chandler. Comadre met us there with my Godson, Neice and Nephew and later Nana and Tia showed up with sodas.



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After 3 hours of hardcore Arizona sunshine (and sunblock) we went home to relax for a while. We laid in bed and watched some Zack and Cody and then Alice in Wonderland. We geared back up and headed out to my nephews baseball game.



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3 hours of soda, frozen lemonade, popcorn, hot dog, cookies, bubbles and hide-and-seek later, we headed home and crashed for a much-needed nights sleep. Sunday we spend a bit more relaxed. We ran some errands, spent some time with Gammy and BabyGirl rode a bike for the first time ever. ♥ It was something Hubby and I were determined to do before life falls apart here soon. That, and fit as many quick weekends to Disneyland in as possible.





Direct link: http://smg.photobucket.com/albums/v436/Flirt482/2009/May/?action=view&current=VID00035.flv

I think we utilized our weekend well. I am sure over the next month or so, while we have the opportunity, people are going to think we have lost our minds. We plan on doing as many fun, spontaneous things as possible. Part of me still working for the next few weeks is to harbor that income for those activities. We want to be able to make as many memories as we can. Disneyland, Bounce parties, movies, the Zoo and Aquarium, etc. Whatever we can find, whatever we can to do make memories, whatever we can do to keep the photo albums packed with stories to get us through those times we know are going to be hard.

Thursday, May 14, 2009

What size serving of bad news would you like? Small? Medium? Large?

We had our first appointment meeting today with the transplant nurse. Lovely lady. She truly was amazing and very easy to talk to. We thought today was going to be physical workup and such for BabyGirl, but it was more of a sit down informational meeting.

During our conversation, she got a call from our insurance. Good news is we have amazing benefits and finances won't be stopping us from the medical aspect saving my baby. Our financial trouble will only lie in loss of my income, relocating and co-pays. That's probably the only good news we got.

Bad news on UCLA. The contract between UCLA and my insurance company recently expired. We are now faced with 2 other hospitals, both in California. One is in Loma Linda and the other in Northern California. This scares me because just yesterday, Hubby's company was ready to move him to a branch 19 miles south of UCLA. NOW we need to put the brakes on their offer, which is petrifying. We don't know where we will go, and won't know for a few weeks until the medical teams there review the file and collaborate with our medical team. Once we find out where, we still don't know when. It is truly one step at a time. We won't know step 3 until we hit step 2.

I figure there is no good or easy and loving way to summarize the the information she gave us today. If I wasn't numb enough, they sure are making sure they are sucking the life out of me. I don't know how much more I can take. And that's an honest to God statement. I know it has been easily overused, for finances or stress or drama. But I HONESTLY don't know how much more I can take before the person everyone knew up until Tuesday morning is put to rest by this new person I don't recognize.

She confirmed repair surgery is almost a non-existent option. We learned that BabyGirl's condition, leaving it as-is, only gives her a lifespan of 5 years max. She reconfirmed BabyGirl is a walking time bomb, as are kids with Restrictive Cardiomyopathy, especially since we do not fully know the progression of the myocardial bridging. Transplant = lifelong struggle. She will undergo heart tissue sampling frequently post-transplant to test for rejection. This will taper off to be a once a year thing eventually, but in the early stages will be quite frequently. She will have frequent bloodwork done forever. She will be on medications for the rest of her life, lowering her immunity. If she stops taking them to rebel or because she is tried of them, she will not survive. There will be many times where we have close calls or false alarms due to the sensitive nature of her immunity. She will need to be constantly aware of sick people around her and avoid situations that may put her immunity at risk. She will almost definitely get sick with 2 very common strains of virus all people carry soon after the surgery, and I wish I could remember the names. She will be at high risk for the rest of her life for Cancer of her lymph nodes. She will almost definitely sustain mild kidney damage from the medications over the course of her life. She will almost definitely never be able to have children from her own womb, not only because the heart will be detached from nerve and not be able to adapt to her changing body, but also due to the medications she needs to take to survive. And the part I was not prepared for, she will face of life of multiple heart transplants. There are no steady statistics on how soon because heart transplants on children have only been happening for 2 solid decades. The nurse gave me examples of a boy who they treat who had a transplant at 1month old and is now 23, going to college and has been completely healthy. He was one of the first 100 kids to get a heart transplant ever. She also has a child who needed a new heart after just a few years. Rough statistics for survival rate are 75-80% for the first year. Then of those 8 out of 10 kids that do survive post-transplant, 75-80% of the will see the next 4 years. Over a 5 year period, the survival rate is 64%. To me that seems 100% unfair and unacceptable.

Is that it in a nutshell? Probably not. I would welcome a nutshell right now. That's it, in its sickening, confusing and wrong reality. I know God has a plan, He will be our strength and healer, He has a reason we will never know, etc etc etc. But you know, that's not really all that comforting right now. I am prayerful, and beg everyone to pray for her healing and future. But even that gives me no peace. This will never be a distant memory. It will be a struggle for the rest of her life, and if that not be longer than my own, the rest of MY life.

Tuesday, May 12, 2009

Take a deep breath

Yesterday was a blur. Today is not much different. But I am more able to talk about it.

The facts are in the post from yesterday, my baby needs a new heart. There is so much involved with the process and so many questions associated with it. I hope to be able to give more insight with this entry and help everyone understand the process, as much as I can.

BabyGirl's heart cannot be repaired. The coronary artery branch is too deep for a successful and permanent repair. 14 doctors here in Arizona agreed this was too big for them, which is why they sent the file to UCLA. They work closely with the doctors there, and I feel comfortably going there and not questioning alternative hospitals. UCLA should be responding soon and everything will start rolling when they do.

I have yet to really learn whats going to happen myself. How long can she wait? How long will it take? When do we have to leave? How long will it take to recover? How long do we have to stay there afterwards before we can come home?

The pressures in BabyGirls heart are not favorable. They are not critical yet, but not that of a healthy heart. We don't know how long before symptoms get serious, which is why the doctors are working at a steady pace to get things rolling. We were told to watch for any complaints of chest pain, and to keep her activity calm. As she grows and changes, her situation will worsen. My prayer is that this is all preventative and we don't ever have to face the 'symptom' that I am so petrified of.

We go Thursday morning to meet with the transplant nurse. She is the liaison between us in Arizona and the doctors in Los Angeles. She will get BabyGirl completely evaluated for the transplant, including compatibility testing and monitoring her status. I don't know how long the evaluation process takes, but once she is completely ready and they put her on the list for a new heart, we will be required to move to LA and wait there. We need to be readily available for the phone call. We will be set up with counsellors and other people to assist us with the preparation and transition. I still don't know who exactly and what they will do, but I will find out soon I'm sure.

Besides the fear of what the future holds for my own daughter, I am 2nd most affected by the thought of the donor's family. The terrible reality that someone else will be loosing their precious little one. The whole concept of organ donation is amazing and truly a miracle. I know and can completely grasp the concept that the heart given to my BabyGirl will be one that would otherwise go to waste if not given a 2nd chance to live. But no matter how much I understand the logistics of it, I will eternally have a prayer in my heart for the family loosing their little one's soul as that heart gives my precious daughter a chance to experience life.

.................................

Hubby's work is our survival right now. Not only is our insurance (through his work) working with us already to prepare for the transplant, but he also has the ability to transfer to a location over there and work when we have to relocate. I will need to leave my job, sooner than later. I need to get things prepared. I need to pack up my things for storage, be readily available for appointments, and if nothing else- just be home with my babies enjoying life. When we move to this area that costs twice as much to live at but having half the income we have always had, it will be one of the biggest challenges. Still so many questions and decisions to make, but I won't make a single one until we get a better understanding of timing.

I have often said how much I wanted to live in California. In my heart, I am a California girl who was born in the wrong state. I love everything about it, and feel so at home there. Bestie and I joked often about living 5-6 hours apart because it would be so easy to see her more. I always joked about living by Disneyland since being there with my family is the most amazing feeling in the world to me. I have a co-worker and friend who always tells me to move to Hollywood because BabyGirl was going to be a star. But never in a million years did I imagine it would happen this way though. Nor would I ever cash in those wishes and jokes for it to become a reality in this form.

I had a friend tell me she was going to pray for healing, peace and hope. I don't think I could have requested better prayer points than that. Strength is something everyone keeps telling me Gabriella and I have, and it is a wonderful thing to have, but never in my life have I felt more weak and helpless. For us, our families/ friends, it is about hope in the outcome, faith in our God and peace as we live this. I don't think a single one of us needs to be a warrior, but rather obedient children of God. Strength is for hardships and battles. But this is something different. This is not anything anyone can battle. All we can do is put our reliance on God to control this situation and embrace every single one of us as we travel to the outcome. No amount of strength from armies of people can control this situation, but rather the faith and hope in God. She was God's, she is God's, but He gave her to me. She's mine, too.

But if there is one more prayer request I can ask of you, is for my LittleMan. Regardless of the love and support we have, things are changing for him, too. My attention will no longer be evenly spread over my 2 babies. He is so young and learning about himself and his place in life, and just as he is doing that, he will be forced into this situation just as we are. Hubby and I, being adults, can learn to mold to whatever we are given, but I fear it won't be as easy for LittleMan.

How are we doing? I wish it was easy to just say we were doing okay to be an example of courage for everyone. It's just not the reality of it. Our baby, the little girl who MADE us parents, the little girl we have lived our lives for for over 4 years now, is facing something bigger than most people ever will in their life. And no matter what I do I cannot be involved in the outcome aside from making sure she is always at her appointments and being taken care of. No matter how many positive thoughts and faith in God I have, I need to remember that small bit of reality. The reality that we could loose her. It would be foolish and naive to think it isn't possible. So until that day comes when she is running around with a healthy heart and free of complications, I won't be truly okay. I know this feeling that my arms and legs are numbs won't subside. I know this confusion and battle in my brain will continue on. I will survive, and I will be faithful, but I won't find myself again until my "mini-me" is healed and healthy.

Monday, May 11, 2009

Just when you think you are already on the beaten path....

God surprises you and tells you that the struggle you have been facing was only the path to the rugged mountain you have yet to climb.

It was not what we were expecting today.

Hubby and I went to meet with the cardiologist for a consultation on the advanced findings of the catheter BabyGirl had done. He showed us the same diagrams, same defects and gave the same findings as we had heard the day of the procedure. But it was like someone picked up that room and turned it on its top in a matter of seconds. The doctor stated that 14 cardiologists and surgeons all raised an eyebrow to BabyGirl's results and findings, and not a single one felt they would successfully be able to repair the defect because it was so deep into the heart muscle. And if they did, the risks of the same defect coming back stronger and more involved were far too great.

They unanimously decided to send the results to a more advanced hospital, UCLA Hospital, and told me it is seeming that the only route for my daughter would be a new heart.

He suggested we prepare to relocate to LA in order to be close to the hospital for her transplant and aftercare, which will be a long, life changing process. He is setting me up with a nurse locally who will "prepare me" for what will be happening. How can one person be responsible for preparing a mother for something this serious? I feel terrible for her and her career.

I am dealing with so many emotions right now that I cannot even explain because I didn't know they existed. I am sure this post seems heartless and matter of fact but it is because I am forcing my lifeless brain to put down words for the sake of updating the people who love my daughter.

Once I relearn how to breathe and can feel my limbs again, I will come back and write more and hopefully be able to be more detailed and informative. And if you have or do call, email or text me and I do not reply, please know it is not anything personal. I just need some time to process a portion of this.

Following Up on this post: http://listeningthruthenoise.blogspot.com/2009/05/take-deep-breath.html

Thursday, May 7, 2009

Spaghetti Dinner Fundraiser

We are so blessed.

A Spaghetti Dinner/ Fundraiser is being arranged (last minute, mind you) to help us out with medical expenses and treatment, as well as basic living expenses while we loose income to care for BabyGirl's recovery this summer.

Please comment here if you would like information on the location and date and I will email you the flyer. I cannot post it here as it has her name and the donation bank account number on it, but can email it over upon request. If you cannot attend, your prayers are more powerful than any dollar, and I ask that you be in prayer for our BabyGirl and our family!

I thank God everyday for eveyone in my life, and couldn't imagine doing this without you all!

Tuesday, May 5, 2009

Why did it take so long???

My title is for both myself and my updating habits, as well as the doctors office and their follow-up call.

First, before anything, I need to give a special thank you out to everyone who has contacted us in one form or another, strangers and family alike. The support we were shown was just amazing, and appreciated. So from Hubby and I, thank you.

BabyGirl jumped back like a spring. The 3-5 days we expected of her not being herself turned into one evening. Saturday she woke up with a happy aura about her, and it was difficult keeping her calm and still. She felt good, which was a good sign. She played and spent the day relaxing. Sunday she was even better, so we went to get pedicures and spent the day with more family! We started the beta-blocker med they gave us on Saturday night and over the course of the week following, we could notice it was working. Her coughing disappeared, which made me think her heart was relaxing enough to let blood flow through to her lungs like it should.

The doctor wants to meet with us on Monday to go over the results. I know that is where we make our decision as to whether or not we do surgery, and we will then be referred to a cardiac surgeon. I have had time to gather my thoughts and emotions to better take care of my daughter. Once in a while I will see something or say something that reminds me of the cruel reality of it all, but I need to keep my mind straight since this is merely the beginning.

On a lighter note, BabyGirl has been suffering also from what I call Diva-itis. All the attention and spoiling resulted in some major Diva-tude, which I am currently looking into medication for. ;)

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