Friday, May 28, 2010

Transplant story in pictures

May 17 to May 25.... here are pictures from Gabriella's transplant process (no, no surgery pics included)! Click on the album below to view them all!

Transplant


But I will post one here.... isn't this breathtaking? View from the jet before we landed....

From Transplant

In our California home

It hasn't worn off yet. I look at Gabriella and am just in awe of the last 2 weeks. She is doing so well, and every time I look at her and try to add into my thoughts what happened to her medically, I cannot even convince myself it is real! To think that just 11 days ago, Gabriella was cut open, her heart removed and a new sparkly heart put in is unbelievable still.

I quickly posted on Tuesday that her biospy went well and showed no rejection! They grade rejection on a scale from 0 to 4, four being total rejection. Gabriella graded a ZERO! Not only that, but her medication levels were already reaching accurate ranges for where they want her to be. Normally, the balance of meds and warding off rejection are the key points after transplant... and Gabriella has just breezed through those effortlessly! God is so good, and we know she would not be doing this well if it weren't for His protection. I know he has used her transplant and recovery over the past 11 days as an example to everyone that He STILL performs miracles. She is a vessel He used to reach others. I am so proud of her....

We were discharged and had to spend one night at the Ronald McDonald main house. Our long term home was not ready for us to move in to yet, and we got clearance for Gabriella to eat in the room instead of going into the public area of the house for meals. We got back to the house at about 430p, and by 445p Gabriella and I were sound asleep. I guess everything caught up with us! Paul did laundry and watched some basketball in the dining room while we slept. We woke around 815p!!! Dinner, a movie on the computer and we went back to bed. Before we knew it, our long term housing was ready in the morning and we moved Wednesday morning! We have been referring to this place as an apartment, but it is really a duplex owned by the Ronald McDonald house. They have 3 long term housing solutions, one being a 2 bedroom freestanding house, and the other 2 the duplex behind the front home. It is so nice being a half mile from the hospital!!! The house is nice, with a living room, kitchenette, bathroom and large master bedroom that has a Queen and Twin bed. We have a roll away bed for PJ when he comes next week that will fit in the bedroom as well. This area is so beautiful and quiet, not to mention the amazing 73 degree temps! We are blessed by this housing opportunity, and I plan on helping as much as I can while I'm here by helping clean the other 2 long term homes when people move out, making meals for the big house and being on hand if they need someone for something.

Thursday we had Gabriella's first clinic appointment! Everything went by so quickly. She had ECHO at 730a, vitals and blood work, meet with the pharmaceutical doctor, nutritionist and cardio doctor, then an Xray. Overall it took 4 hours. They made no changes to her meds and said she was doing wonderful! She still has a slight pericardia rub, which is caused by swelling of the heart due to surgery. It is very common for anyone that has any kind of heart surgery and they are treating it with Motrin, which makes her med count 8. After clinic we came home to eat some lunch and headed back out for an afternoon "out". Since Gabriella's exposure to the public needs to be limited, we got out of the house and just drove around the area. There are some gorgeous places in California, just a short drive away. We found some local shopping areas we will need over the months and got a feel of our area.

Friday, we had a visit from some of the members and Pastor of Restoration Covenant Church, who also brought lunch. They found out about us by one of the members brothers, who we know from Chandler. It was awesome to have spiritual support so quickly start here in 'foreign land' where we know so few people. The Pastor and his wife were the coolest people, and the 3 others that came were great people- one of them a nurse on the unit Gabriella was on at the hospital! A young, lively preview of their church! We are so excited to visit their services when Gabriella stabilizes a bit more!

This weekend we plan to hang out more, which will be a constant activity here in our California home. The weather is too amazing, so we will probably pack Gabriella up in her stroller with her mask and go for more walks. Gabriella has been eating amazing, and even had 2 dinners tonight! Her speech is making strides like no one would believe. I wish so much I could afford to bring Mrs Lisa, her speech therapist, here with us so she could see her progress and grow on it! I am absolutely convinced that the increase of oxygenated blood to her brain is assisting in creating new pathways for speech. Her ability to transitions sounds within a word and mimic a word with minimal effort is something we have watched her struggle with for 8 months, until now! And the retrieval issues we were starting to notice over the recent months seem to not be an issue now. It truly is amazing what a "change of heart" can do.

We are probably the luckiest people ever to have had such wonderful family we trust wholly to take care of PJ these past 2 weeks. It is so comforting knowing he is with our family, that I don't ever seem to worry about him, I only miss him. He is mostly staying with Paul's sister and has been having a blast, but tonight she called and said she was starting to get sick. We are hoping she gets better soon, and even more hoping PJ does not catch anything! Paul heads home next week to get PJ and bring him here to us, but might have to stay home a bit longer than planned to let him get better if he comes down with the summer cold. Please be praying that regardless what happens, no cooties make their way here! (not that they stand a chance... I am sanitizing, mopping and cleaning way more than I probably need to... lol)

My mind has been invaded with thoughts of Gabriella's heart donor. I have a lot of 'business' things I need to tend to like getting our health insurance covered in California, therapies set up for Gabriella and other general things. For some reason, I cannot seem to buckle down and work on any of it because all I am thinking about is what I am going to put in my letter to her donor family. I need to start just writing... as any of my readers have probably noticed by now, I write and write and spill my guts. It helps me release more than it helps you stay updated... lol. I am praying for Gods direction and sensitivity in my words. So I am going to start writing and see where God leads the keys of my computer.

And finally, can I just include you ALL in a blessing for a safe and fun weekend. The long weekend means you can spend extra quality time with your families.... something that is so easily taken for granted. Thank you for being there for us over this journey!

Tuesday, May 25, 2010

The results are in...

Biopsy results came back: NO REJECTION!!!!!!!!

And....

We r being discharged!!!

Praise God! I am speechless! Gabriella is amazing! :)

Monday, May 24, 2010

Tons of great questions

Lots of great questions asked on http://www.formspring.me/GabriellasHeart..... please visit and scan through the recent questions and answers relating to Gabriella's new heart!!!

Sunday, May 23, 2010

Sparkly heart update #15

Did I really post my last sparkly heart update Thursday?!?!


Taken 5/23/2010

We had a wonderful week as far as support goes. 8 cars, of 20 people, over 7 days... we had friends and family filter through and be with us through the week. It was great having the love and support, and good for all of them to see how amazing Gabriella was doing. She is a testimony of strength and faith to even our closest family and friends. My son PJ even came down with my sister in law and we were able to spend some time with him. It was noticeable to even me how differently I felt as a mother to him. This process has changed me. God is using Gabriella. On top of the in person support, we have been shown incredible support through social networking. I have received some of the most amazing notes and messages about how Gabriellas story has changes peoples outlook on their children, God and miracles. Her impact... and you all sharing that impact with me... puts her purpose in life at a tangible level. How many people have gone their whole life still searching for their purpose.... and my 5 year old has found hers without even knowing it! My personal Facebook has been blasted with messages of love, my Twitter has seen tons of support and over 200 new followers, and my blog has seen over 23k page loads over 15k unique visitors, 8500 being first time visitors. The love has been overwhelming.... and I wouldn't trade it for the world!

Today was post-transplant day #6. Gabriella is back, plus some! She is so vibrant and full of energy. She acts like she feels better than she has in a super long time! Her coloring is fabulous, her stats are stable, and she is recovering picture perfect. Her sassy diva style is leaving behind an impression on the staff here.... she may have a reputation!

She only has her central line and one IV in place. Otherwise, everything else has been pulled! She finished her 5 day cycle of IVIG and Thymo treatment which harshly kills her immune system and is down to the maintenance meds she will be on for the rest of her life to keep the immune system suppressed. It will take a few months to get her dosages just right. She is on 16 doses of medicine a day, 7 different meds at 5 different times during the day. We are getting comfortable with her meds. As their transplant kids stabilize, they are mainly cared for by the parents or bedside support, with the nurse as just an aide. This helps us get comfortable with the new routine.

It is insane to think that we might be discharged just 9 days later... and we don't for one second find it as luck. God has been so amazing, and that hedge of protection I pleaded for you all to pray for is strong and tall. We feel so blessed for every moment.


Taken 5/23/2010

For the first time in over a year, I feel like my daughter is full of life, and not dying. Like we have a future beyond fear. We have rounded the top of the steepest point of the mountain and are looking at the beauty of what is in front of us. Like Miley Cyrus says about her song The Climb, which has been our theme song through this journey...... "Life's a climb, but the view is great."


And a funny video to leave you with... we had a Memory, Old Maid and Bingo tournament with Aunt Kara today. This was Gabriella tricking me into thinking the card she has was a Princess, when it was really the Old Maid Ursula! She cracks up.... and I love it!

Gabriellas 1st biopsy

So post transplant kids get frequent biopsies of the heart to test for rejection. They go in through a femoral artery and take a sample of the heart tissue and test it. The results take about 24hours to get back. Based on that, they can determine the level of rejection, 0 being none and 4 being most severe rejection.

Gabriellas biopsy was scheduled to be Tuesday morning, but the doctor just called and had a cancellation for tomorrow morning! SO, Gabriella will be put under general anesthesia and have her very first heart biopsy. She might be discharged to our local temporary home as soon as Wednesday!

PLEASE pray for her through the procedure, and that she shows 0 rejection. She has recovered so well and is so full of life right now, I think her and her new sparkly heart love each other.

Saturday, May 22, 2010

Gabriella gets some Celebrity love!

Thanks to my best friends persistence, my favorite celebrity sent his well wishes to Gabriella on Twitter!!! Can't wait to show her that 'Emmett' sends his love!!!!!!

From: @kellanlutz
Sent: May 22, 2010 2:12p

@GabriellasHeart Bless your precious new heart! You are so loved! Wish you a quick and painless recovery!

On Twitter: http://twitter.com/kellanlutz/status/14516670245

Hearts

Happy Saturday everyone! I saw this on Twitter today from our friends at Make a Wish Arizona. It his so close to home... And might be my new favorite quote.

"What the heart gives away is never gone. It is kept in the heart of others." - Robin St. John

Thursday, May 20, 2010

Sparkly heart update #14

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Smiles to start the day!

Whew, sorry for taking so long everyone. It has been a trying day.

Last night, Gabriella walked 2 laps down the hallway! She was worn out, but she did it! She has to walk to the bathroom now so it is quite the journey but we are learning ways to make her comfortable. Having your chest and ribs open does not exactly make for an easy recovery, especially since I cannot pick her up!

This morning, she woke up a few times early. She was happy and doing well early and had one chest drain pulled. She walked the hallway, went to the bathroom and sat in a chair for a while! She had lots of visitors from our family and it wore her out. She had some smiles to give and she loves seeing everyone, but the rest of the day she spent sleeping pretty hard. We had our nurse do some teaching on everything transplant/rejection/home care while she rested, and then got her up. She pottied, walked again and was in good spirits after her rest. Everything went down the drain again though when they changed her central line dressing in her neck, arterial line bandage and cleaned her "zipper". We got her to eat a tiny bit and drink a little, but she was too exhausted. We had another teaching session on her meds and more transplant/rejection related education for another hour or so. After that, we decided to let her rest for the rest of the evening and skip her walk and she didn't want her dinner. Hoping tomorrow she will find additional strength! Everyday is one day closer to getting better, even if we do have hard days like today.

We got word today that our temporary home away from home will be available upon discharge! Praise God! It wasn't going to be available for 2 to 3 weeks so we were starting to worry where we would take our family. I have had a few people ask, and Gabriella will have to stay close to the hospital for 4 to 6 months. We have all the details worked out now, and will begin our temporary residency here!

Oh, and a tiny milestone. I was able to get Gabriella restarted on her Baclofen. I recently blogged about this med her rehab doctor put her on for her spastic dysarthia in her right arm due to her stroke, and it was actually working a small bit! We started the dose again tonight so we are hoping for all around progress!

On that note, our night nurse just asked if she could pray with us before Gabriella went to bed. It was precious, and meant so much to us to have her pray over our Gabriella. Even days that are hard both physically and emotionally can be saved by a simple prayer.

And now I am off to pray.... I have so much to praise God for. G'night all.


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Wednesday, May 19, 2010

Gabriellas Zipper

Now presenting... Gabriellas Zipper!!! It looks AMAZING!!!!!

She walked today to the bathroom, got her pacer wires out and she is drinking!!!!!

Her heart biopsy will be monday or tuesday and she could be discharged as early as next Thursday or Friday!!! (Barring any issues)

Please pray! Deeper update tonight. I'm phone blogging and headed back to Gabriella!!!

Sparkly heart update #13

Gabriella has a great night. I got to stay with her so the first time she woke in a panic but the rest of the time she was okay knowing I was there.

She's so stable. You guys, your prayers are working. They are strong and creating such protection over her. God hears you. Please keep them coming!

Gabriella and her heart are in what I decided are the bonding stages. She is getting used to it and the way it feels to beat different and her body to feel different. And the heart is getting used to knowing Gabriellas little frame. They have begun this process with such grace and I pray they always love eachother!

They stood Gabriella at about 530a to get her weight. We changed out her bedding and pants and got her settled back in... OXYGEN FREE!! Today lines will start to be pulled, slowly. And she will get up and walk and eat. She doesn't know it yet though... Lol. It will be a pivotal day for Gabriella!

Especially with her becomin mobile, we are being very cautious with germs. Her immunity is down due to the medications and we are keeping clean for her!

We continue to give God all the praise and glory He deserves. He has led everyone to do what's right for Gabriella and her sparkly heart and we are so thankful!

Tuesday, May 18, 2010

Sparkly heart update #12

Yeah, that's Gabriella sitting up!

Major strides today without much to update. She has slept most of the day and they have been weaning some meds and balancing others. They are watching her closely to ensure she is on the proper balance of things.

Prayer requests for the coming days... The steroid she is on can cause her blood sugars to be high. She was running high this morning but leveled out later. If they stay high she will be treated short term with insulin. Also, that she be protected from med allergies. She had a hive reaction to the IVIG but they were able to conquer it with some benadryl. And finally pray for her spirits. She is giving me smiles and I want to keep those coming!

They told me today that her heart rate dipped in the OR, which is why she has a pacer inserted to regulate her heart rate if it happened again. It hasn't and she's doing well! Hopefully tomorrow we get a few lines pulled and can get her walking.

The prayers and love have been amazing. And I have had Gabriellas donor family on my heart in a strong way. Everytime I see the heart beating in Gabriella, I feel blessed. I have so much more to blog about that but the emotions are just too tender.

Sparkly heart update #11

Gabriella is extubated!

And smiling! She's only been back 9hours!!

We woke up and got ready. As we were walking into the hospital, the nurse called to tell me they had just extubated her and she was crying!

She is on 11 meds right now and having a hive reaction to the IVIG so they added more benadryl. She's asking "I want hot tea, my heart hurts"... Sweet girl! She has drank and eaten ice chips and even smiled as you can see in her picture. She's been talking to me and even had a dream PJ stole her ice chips.

She's a fighter. Some people's heroes are over 6ft tall, wearing logos and costumes and use super powers. Mine is 45.75in tall and curly haired with a sparkly heart.

I love her so much. I can't even fathom how much more God could love her than I do, but he does.

More updates as the day goes on. No cell phones so I'll post when I sneak out.

Sparkly heart update #10

We just left our sleeping beauty in the loving, faithful and capable hands of her medical team. My emotions are high and heart full.... Gabriella has been given a new chance at life.

She wheeled past us almost exactly 7 hours after we left her and I couldn't believe how great her coloring was. I didn't know how pale and washed out she was until I see her now. I'm sure that will keep proving true with her activity and energy!!

After they got her in, Dr Razouk came out to let us know how it went. No major issues and the heart was strongly beating right away. He told us the pressures in her lungs were high and he was surprised she was doing as well as she had been. She was definitely protected, all glory to God!! We would have found this at the cardiac cath which I'm sure would have increased her listing status. He spent a lot of time ensuring there was no bleeding or issues before closing her up.

I asked about the donor family. I know they won't tell me much. But Dr Razouk broke down. A man who just took a heart and placed it into a human body, after years and years of doing this, was in tears. He said it was tragic. It was in that instant I took on the burden of grief for the mother of Gabriellas donor in a way I cannot describe and was not prepared for. It is unlike anything I can describe right now, but the feelings in my heart run deeper than I can express.

On top of everything obvious, I ask for prayer for her brain. Being on bypass can cause swelling and strain on the damaged area from her stroke, worsening some symptoms. We are going to watch it closely and see how she does as she wakes.

Here are some pictures of Gabriella when we left her. They plan on trying to start extubating her in the late morning. She has a central like in her neck, arterial line in her arm, 2 IVs, a foley catheter, 2 chest drain tubes and 2 pace wires just incase her heart rate flips out. She is going to show them what a fighter and miracle baby she is over these coming days!!!



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We are going to get a little sleep in. Until tomorrow, my amazing friends and family!

God is amazing, and I have never seen a bigger miracle than the one performed on my child tonight. We praise you with all of our being, Jesus!

Sparkly heart update #9 COMPLETE!!!

Just saw my princess wheel by on the way to her room! She looks amazing! I cannot wait to love on her!!!

More updates after we talk to the doctor!!!

Sparkly heart update #8

Received at 155a "chest is closed will be done soon"

All praise to God!

Sparkly new heart update #7

Update at 134a: "will be closing soon Gabriella is doing fine"

Monday, May 17, 2010

Sparkly heart update #6

Got a new update!!! "new heart in all ok" 1120pm

Sparkly heart update #5

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

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

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

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

Sparkly heart update #4

918p PST: Surgery just started. Going well.

Sparkly heart update #3

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

Pleading for prayer tonight from everyone.

Sparkly heart update #2

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

I will keep updates posted as they come!!!

Sparkly heart day update #1

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

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

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

Heart!!!

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

Thursday, May 13, 2010

Lookie there....

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

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

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

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

Wednesday, May 12, 2010

It is truly amazing.

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

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

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

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

Sunday, May 9, 2010

Happy Mothers Day

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

Happy Mothers day to....

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

.... all of the Godmothers and Aunts

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

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

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

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

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

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

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God bless every woman in my life!

Friday, May 7, 2010

Friday Funny

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



I love my Sienna, too, Swagger family!

Thursday, May 6, 2010

Cardiac Catheter is Scheduled

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

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

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

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

Monday, May 3, 2010

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

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

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

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

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

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

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

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

Sunday, May 2, 2010

You asked...

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

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

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

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

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

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

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

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

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


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

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

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

Early Screening

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

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

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

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

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

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

DonateLife.net

Saturday, May 1, 2010

Are you having a Bountiful morning?

I am!

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

I went to www.BountifulBaskets.org and signed up for an account. I paid $15 for my basket, $1.50 processing fee and $3 first timer charge, $7.50 for a mexican ingredient add on and $10 for 6 sheets each of 5 flavors of cracker bread in 8x10 pieces add on. $36 got me this:
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1 bag raddishes
1 Honeydew melon
1 Cantelope
1 bunch of bananas
1 bundle of spinach
1 bundle of romaine lettuce
4 artichokes
2 cucumbers
4 tomatoes
8 kiwi
8 apples
3 clamshells of blackberries
24 sheets of cracker bread
Mexican pack: tomatillos, Grey Squash, Serrano Peppers, Avocado, Cilantro, Mexican Limes, Garlic, Green Onions, Yellow Onion, and Jalapenos

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

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

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

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

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