Please read this lovely blog entry written for Gabriella! And be sure to leave her some love in the comments! YOU ALL are, afterall, the reason we can smile so big!
http://earlphotography.info/2010/03/09/gabriellas-sparkly-new-heart/
I just wanted to share that God's newest angel ascended to heaven this morning. Her body is renewed and she is no longer in pain. Layla Grace's story can be found at www.laylagrace.org and her family on twitter www.twitter.com/laylagrace
Today, her family tweets: @LaylaGrace: Layla went to play with the angels early this morning. Rest in peace precious Layla. 11/26/2007 - 3/9/2010
God bless you and your families.
I decided 2 things this weekend. 1- I made 2 of the most amazing and adorable kids on the planet and 2- Rachael Earl is a goddess with a camera.
My friend Andrea, Owens mom, entered our name into a photo session giveaway and we won it way back when! It took a while to get this session scheduled because everything for so long post-stroke was hectic, and then the holidays, and getting her listed... blah blah blah. Anyways, we finally got the session scheduled and had our pictures done this Saturday!!
CLICK HERE TO SEE OUR SESSION
I am, NO DOUBT ABOUT IT, going back to Rachael in the future for more family pictures. Her style, ability to capture personality, and laid back structure of the pictures is just absolutely perfect! And she is such a sweetheart to boot!
VISIT RACHAELS WEBSITE! AND BOOK A SESSION!
(Family, no worries. I will have prints to share with everyone in a few weeks! If anyone out there wants some pictures, please comment here or email me and I'll make it happen!)
I last posted the statistics for the waiting list on February 19... it looks like they update the data every 2 weeks! Here is the most current- and the statistics for kiddos Gabriella's age hardly budged.
(all information according to www.unos.org)
As of March 3, 2010 there are 3,130 people (adults and children) in the United States waiting for a heart.
(OPTN data from February 26, 2010)
Nationwide:
There are 86 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 18 one to five year olds waiting for a heart in Gabriella's blood type of A+.
Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.
There are 2 one to five year old kids matching her blood type of A+ in Region 5.
I posted Saturday about St. Joesph's hospital in Phoenix now being approved by UNOS to do heart transplants.
Yesterday, I made my calls. I called and left a message for our transplant coordinator (Sharon, for those of you who know the office) and also for the coordinator at St. Joesph's. I got a call in the early afternoon from St. Joseph's nurse, and she was extremely nice! I was able to give her a rundown of Gabriella's history, and she then told me about their team. Their individual credentials make for excellent people to build a transplant team! The doctor started at CHLA and did additional work at Stanford. The Cardiologist spent most of his career at Children's Memorial in Chicago. And the coordinator worked at CHLA, and worked closely with our Loma Linda team, and also at Mount Sinai on the east coast! She was very excited and even said if this went through, Gabriella would be the first transplant kiddo in Phoenix! We talked a bit about being listed at multiple transplant centers and left it with her calling my insurance coordinator to feel them out.....
A while later, Sharon called me back from our cardiology office. I really do love talking to her. She told me about how their offices met with the team at St Josephs the day before the press release came out, and they are a very well put together team! Our cardiology office has been dealing with transplant kids and sending them out for 20 years or so, so they know what it takes! The 2 teams spoke about the future, post transplant care and other suggestions. St Josephs seemed eager to take the suggestions and work quickly on getting them in place! Sharon said in a few months they should have all aspects of the process in line and she'd definitely feel good with us going there. But.... a few months or so. And I value their opinion highly... they haven't led us wrong yet!
Later that night, the St Josephs nurse called me back and said she talked to insurance. There was NO way they were going to approve Gabriella for St Josephs.... darned HMO. So... we are back to where we were. But I met a super awesome new nurse in the process and hope to get to see her, under POSITIVE circumstances, in the future!
Surprisingly, we are not upset. Sure, having a heart transplant in Phoenix would be ideal. It is 30 miles away, we wouldn't have to split up our family, Gabriella could have in-home school and therapy, we could have help from family. But God wants us in California for this, and there is a reason- that of which I do not question. And I did my work, and I tried it out as an option.
The best part of this whole story is it IS available! There are kids out there who will benefit from this center and families that will stay together. In a region of Arizona that has 10 to 20 kids per year who need a new heart, most of them can stay home to get that now! What a blessing, and long overdo for the Valley of the Sun!
If you read my blog in an RSS reader or through email, take a minute to stop in to the website! It got a spring-y facelift!
www.GabriellasHeart.com
I LOVE Twitter. Daily I do a search for the term 'heart transplant' to find other moms or interesting articles. I have found some great follows through this avenue!
But nothing compares to what I found tonight.
@phxnews New Hospital for Pediatric Transplants: In the past, infants that needed a heart transplant would have to travel t... http://bit.ly/9cFGkH
@stevekrafftfox New children's heart transplant program at St. Joseph's hospital is first one of its kind in the Valley of the Sun
I watched this article: FOX 10 NEWS
And I researched Dr. John Nigro who graduated Med School from University of Illinois, specialized in pediatrc cardiothorasic surgery at Childnres Hospital of Los Angeles and did further training at Stanford University in NorCal.
And I read the press release, released yesterday.
I have a lot of work to do on Monday....... :)
Gabriella is a smart, smart cookie. She was always on her game when it came to speech. As anyone who has ever been on my blog before knows, that was all ripped from her September 25, 2009 when her stroke attacked the very spot in her brain that operate her speech.
She has gotten to the point today, just shy of 5 months later, where she can say approximately 30-40 words and phrases in context and accurately (including Disneyland, which makes me the happiest mommy on earth). I couldn't be more proud of her progress! And to think that when her stroke happened, she had no control to even open her mouth r stick out her tongue! Grated, if she wasn't like me... stubborn and a perfectionist... she'd probably have more. But it'll come.
I had to share a video I shot of her counting to 10 this past weekend. Most of Gabriella's words are crystal clear, but as you can see from the video, the words counting to 10 are not "perfect"... yet. The whole point of therapy is to train her mouth to move in the proper motions to get that sound and word in her head out accurately. The more and more she practices, this counting to 10 will be crystal clear. And she only follows my prompts, not because she doesn't know how to count to 10, but to train and prompt her mouth to move in the right sequence for the word itself.
I'm hoping to post a followup video of her counting to 10 solo and crystal clear soon!
Just Friday an article was plastered all over local papers and new stations about the rise in RSV cases this week. It's that time of year, where RSV reeks havoc on babies and little ones and kids under 12 are restricted from the hospitals. They said something like there is a normal 1600 cases every year, and so far 1300 cases have been identified. It is obvious to me this year will be a huge outbreak of it... seeing as how 64% of that 1300 was in the last week!
Oh yeah, my point. To go back a bit, Gabriella does this throat clearing thing. After some research in both anatomy and symptoms of RCM, I found this to be a 'normal' tick for her condition due to the back up of blood flow from the stiff heart. She started a cough last Tuesday which at first I attributed to this tick she has. By Thursday she started fevers. Come Saturday, I couldn't keep her fevers under control and her cough was constant. I feared the stress it was putting on her heart. My amazing and near-Godly pediatrician took a bit out of his evening to talk to me and suggest I take her to the ER. He even called ahead to tell them to not let Gabriella sit with the cooties in the waiting room.
(Can I stop for a moment and say I'm NOT that mom... I don't go to the ER for anything unless it involves gaping wounds, missing limbs or convulsions. In the 5 years I have been a mom, we had been there once when Gabriella had 105 fevers and couldn't breathe, and it turned out to be croup. Makes sense now why her body took it so hard, she had a sickly heart... but anyways.)
So we headed to Cardon Childrens Saturday night...
When we got there, they were cleaning a room for her so sat us in the hallway outside the room to wait. I cased out the situation, the little girl before her had stepped on something and needed 4 stitches in her foot- so I knew the room wasn't just plastered for hours with RSV or another cootie. The downfall to sitting in the hallway was watching things go down in the room next to her where a 1 month old baby was being intubated for severe RSV. I was highly emotional, trying to not cry.... those poor parents. Later the nurse told me the cases they have seen have been so severe that day and they even had a 4m old breathing 96 times per minute! GEEZ!
They hooked her up to a Pulse-Oxcimeter. I've decided I need one for my house. The last time she was monitored for any length of time was when she had her stroke. She was my 100% baby, to everyones surprise! Well, she tends to run about 94% sitting up not coughing and 89% sleeping. They did a chest X-ray which was clear despite wheezing and decreased lung sounds. They did a strep swap to rule out that, which ticked her off. They drew blood from her arm, and she fought so hard she blew her own vein! Nurse Toni was so amazing and calm about it all... she got some blood out of the blown vein anyways! (Shout out to nurse Toni! I hope you check in on the blog!!) She then started an IV in her hand to get more blood and be prepared if she needed IV antibiotics. All her bloodwork came back normal. She had elevated liver enzymes but they said that's common with fevers and general illness, and she was slightly dehydrated due to the Lasix for her heart. They decided she had a chest cold.
That's right. We were in the ER until after 3am for a chest cold. So if this mom, who only takes kids missing limbs or convulsing to the ER, was in the ER with her 5yo and a chest cold, it can paint the picture of how hard that ridiculous cold was on her body. Her special heart can barely tolerate keeping HER going, let alone fight illness as well. I'm sure this is just a preview of the Immunosuppressed lifestyle she will have!
So by today she is doing well. Her fevers have taken a hike, and her coughing has decreased. And as if I needed the comparison of a healthy vs. unhealthy kid, PJ is now sick! He has the same nasty cough, but is handling it so much better. Now that kid, he got ALL the strength. I wouldn't be surprised if they find his heart to be made of platinum muscle. Probably for a reason too, he has 2 tough women in his life. :)
Make sure you follow my Twitter. I try and keep my blog updated as much as possible, and everything will ultimately end up on here, but for in-the-moment Gabriella action (plus some general stuff too) please follow my twitter @GabriellasHeart / www.twitter.com/gabriellasheart
Gabriella is in the ER tonight trying to diagnose and treat her high fevers and cough she's had. We have had an Xray, throat swap, 2 blood draws, O2 monitoring, heart monitoring... And haven't found anything conclusive yet. I will write tomorrow after we (hopefully) have a reason for all of this and after this exhausted and drained mama gets either sleep or strong coffee!
The first and most common question is 'how long before Gabriella gets her heart?'. It is an answer no one has... and even the statistics below do not help us know how long we will wait. But the statistics below do show the volume of kids like Gabriella waiting. Her heart can come from anywhere in the country, not just our region. The statistics do not include listing status (urgency). Please check out the UNOS website link below and you can make your own personalized statistic charts based on organ, age, blood type, region of the USA, etc. I'll try and update these statistics weekly!
(all information according to www.unos.org)
As of February 19, 2010 there are 3,093 people (adults and children) in the United States waiting for a heart.
(OPTN data from February 12, 2010)
Nationwide:
There are 88 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 18 one to five year olds waiting for a heart in Gabriella's blood type of A+. Half/9 of those kids have been waiting less than a year in the United States.
Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.
There are 2 one to five year old kids matching her blood type of A+ in Region 5.
I was asked this anonymously.... and thought it was a great one to share! Please go here to ask me anything: www.formspring.me/gabriellasheart
"If you you could spend the day with the child whose heart will one day go to your daughter, would you?"
Thats deep... it is kinda like asking "If you have the option to know when it is you will die, would you like to know?"
Of course, spending time with him/her would be extremely heartbreaking- knowing they were not going to live, but that is a fear I live anyways... everyday with my Gabriella.
But the answer for me is easy and sincere.... yes. If it were even remotely possible to know who it would be, I would love to be with that child. Like I blogged, whoever the donor is will not die BECAUSE of Gabriella, Gabriella will live because of them and the necessity of God's divine plan. And to actually know that child, experience their personality, and form that living bond... that would be priceless. To think of the legacy that could be carried on by Gabriella and I actually knowing about them in human flesh... just amazing. I have such a passion to always keep the donor's spirit alive and always tell the story. To always include him/her in Gabriella's story, so that the importance of their gift, and reality of the fact that they were a living and impactful vessel of God, can always remain as real as Gabriella's survival is real.
Thank you so much for asking me that!!
February 11... I will never forget the date. Not only because it is my little sisters birthday... but also because that was the day Gabriella's new heart journey started. It came exactly 9 months, almost to the hour, from when we sat in that small room at the cardiology office and were told Gabriella needed a new heart- May 11, 2009. We were dealt setbacks with needing air transportation in August, Gabriella's stroke in September and months thereafter of recovery from the stroke. But finally, the day we once feared but now are ecstatic for, came.
In the early weeks of finding out she needed a new heart, her doctor told us Gabriella would have, potentially, a maximum of 5 years before this condition would take her life. He said it with much caution, as no one knew what to expect of this condition that children just do not get. Everyday we wait is a day closer to loosing her... it is just that no human knows how many of those waiting days there are. As these more recent visits have gone, I see Dr. Alhadheri's doubts in having 4 more years visual on his face.
We had so much fear in August, when we went for our intake visit to Loma Linda. It was still such a hard concept for us, with Gabriella being so visually healthy. To think of the surgery and the severity of what we were putting her through, we just couldn't be 100% at peace with it all. When she had her stroke in September, and were given a visual experience of how unhealthy she really was, we were given a wake-up call. These months of recovery and waiting, and watching her get worse, put us in a position this past week to go to Loma Linda for listing with excitement and joy.
The only way to ensure Gabriella gets to start school, experience recess, face peer pressure, win a competition, learn to drive, dye her hair odd colors, go to prom, graduate from high school, choose a career and pursue it, meet her soul mate, have or adopt babies... or even change the world- she needs a new heart.
In the very same way, another child will not.
It is impossible to have a single moment rejoicing in the memories yet to come without grieving in the moments another mother will not have. My heart is so full of excitement and happiness and in the same moment compassion for another woman out there I don't know yet. It is something I will never be able to explain, not on my blog or in person. It is a feeling that is just a feeling, and one that is only shared among others who have actually experienced it.
The most important thing to remember is that a child will not loose their life SO THAT Gabriella can live. Gabriella will live BECAUSE a child had to loose their life. It is all part of God's divine plan. Which to me means, it is okay to pray for Gabriella's new heart. It does not mean you are praying the death of another child. I find it my best advice to pray for God's timing and ultimate design. That, if another child does have to loose their life, that their gift can be forever shared and displayed in the life Gabriella lives. That the mother, father and family of the child who gives this gift can find peace and comfort, if in nothing else, that they spared another parent of that pain.
The day we get the call for Gabriella's new 'sparkly heart' will be a day our family expands. Whether or not we ever meet the donor family, they will be forever a part of ours and my debt to them can never be repaid. I will make it my focus in life to make sure Gabriella always understands the gift like no other she received.
I asked a friend of mine if she would like to write something, to share the 'other side of the story'. I have been blessed to know her, and know that God put her in my life for a reason. Here is what she shared for all of you to read.....
My name is Lara and I am a friend of Kristi. I am constantly amazed how people come into your life for a reason. I worked with Kristi for a very short amount of time, but became great friends. I am also a mother of a child that has gone home to Jesus. Her name is Avery and I now have my very own Guardian Angel. As a mother, we all want the very best for our children and the thought of losing one is nearly unbearable for us all. Trust me, it is. But...in the loss and over time, you become aware that your life becomes an example for others that are going through similar situations or hardships. For me, I have been blessed with Kristi and Gabriella. I unfortunately was not able to donate any organs of my precious Avery, due to severe internal injuries. BUT... I WOULD HAVE! I truly believe that the greatest blessing a grieving mother could get, would be the knowledge that your child saved someone else. What an amazing gift!!! The loss of your child will not go away and your gift will not bring her back, but I would never, ever, ever wish the pain of a lost child on my very worst enemy. What a wonderful feeling to know that you have spared another family that pain. God has a day and time for us all. Unfortunately, some are taken away before we believe they should be. But some, a very few, need help from another special angel so that they may live life until their time comes. Much love to you all.
GABRIELLA IS OFFICIALLY ON THE HEART TRANSPLANT LIST!!!!!!!!!!!
Praise God and His amazing love. And my heart is constantly with the family who will give my daughter the gift of life while greiving their own loss. God knows who they are already.
This won't be the typical in depth and descriptive blog entry... lol.
We got word this afternoon that our insurance approved a visit for this Thursday and we are leaving Wednesday afternoon for California! We will stay in Riverside (thanks Priceline for your killer NYOP deals) and have an appointment Thursday morning for Gabriella. Neuro documents approving her for transplant have been sent to Loma Linda (not without a days worth of fighting to get them sent today) and everything is in line! They will do some bloodwork and a general evaluation of her status and get her on the list within 24hours of our visit!
I am ecstatic! This stage of chaos I've been dealing with this week to get this pulled together is definitely going to pay off when everything is in line and we come home to WAIT!
For those interested in the 'list' procedures.... They basically put Gabriella's stats into a national database, UNOS- United Network for Organ Sharing. She isn't listed as "Number 34" or whatever number she would be. Rather, they have all the candidates in there with all their stats, and when a donor heart becomes available, they plug in the donor heart stats and a list is THEN generated for that specific heart offers compatibility. Of course, part of the stats they enter for candidates is level, and Gabriella being a non-urgent level (praise God), she would not get the heart before a child on life support. It is a gamble every time they get a donor heart.
On that note, imagine if more people were donors. The wait would be shorter, the list would move faster and more people would survive instead of dying while waiting. If you were to die today, wouldn't you want to help someone who has a chance at living? That choice a parent will make for their child come time for Gabriella's new sparkly heart will be what saves her life, and a gift more valuable and precious than any other. PLEASE consider officially signing up to be a donor here: http://donatelife.net/
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