Smooth Sailing

My posts are few and far between, but I'd rather have it that way than posting about complications! Our family dynamic has changed, life evolves rapidly, and time is well spent these days so updating the blog has taken a back seat but not forgotten!! I have also been working diligently on converting this blog and all entries from diagnosis until the end of her first year post transplant, into a bound book which has been quite the process. I want her to have in her hands an account of every emotion and detail that I poured into this blog so that she carries her story in its entirety with her forever. I always want her to remember the gift she was given and what it took through her strength, our faith and Abbie's legacy to have. I will post pictures when it is complete!!!!

Gabriella is doing AMAZING! She just started her 2nd year of cheer and was on Honor Roll for the first grading period of 2nd grade. She is maturing so much in her attitude and behaviors that I can really see at times the transition into the next stage of her life. Thank God and thank our sweet Abbie for that gift and privileged, to see her growing into a beautiful young lady!!!!

On Monday, Gabriella had a routine 6 month biopsy to check pressures and rejection. Results are in after a smooth procedure, and Gabriella is doing amazing! Slightly elevated pressures in her heart, but overall she is in amazing health. They gave her a 1r rejection, which compared to a ZERO is the difference between an A and A+. We will take it for sure!!!! Her antibody rejection came back negative and her meds are on target. We couldn't ask for anything better entering into the holiday/cootie season!!!

Hoping this blog finds all of the readers who have stuck around well and puts minds at ease for the people concerned something had happened due to my lack of posting. Thank you so much for keeping Gabriella in your thoughts and prayers!!

Sparkly Heart Birthday #2

Dear Gabriella,

My precious daughter... Today marks 2 years since we got the call that changed the lives of so many, and saved yours. After waiting 97 days for your strong sparkly new heart, I grieved for the pain another mother was feeling somewhere in the country, and handed you off to the surgeons trusting they would return you to me a stronger version of yourself. Not only did they deliver on that, but they handed me a little person with a future. To see the achievements you have made over the last 731 days is nothing short of a miracle. You have allowed me to see everything with beauty and purpose. Nothing is impossible and every moment is a chance for a miracle. You have done more than survive, you have lived, and you inspire me to do the same.

I wouldn't have traded a single second of time or ounce of energy I put into fighting alongside you from the moment we discovered a problem until the moment I type this letter. The sleepless nights and levels of intense stress, the fights with insurance and pharmacies, challenging doctors and nurses, the research and education on your conditions and medications, the miles driven and dollars spent... never will I regret it or wish to change any of it. I'd proudly give my life for you and your little brother at any moment, and I can only hope you can look back and say you know I would because I did.

I do not know what the future holds for you, for me, for our family or for whatever God may throw our way. But I want you to know, my little princess, that being given the blessing of waking up every day and knowing God let me keep you is more than I ever deserved as your mother.

I love you forever and always,

your Momma

May 13, 2012

Her heart lives on...

With every morning that Gabriella opens her eyes and her heart beats, a sweet mom has awakened to another morning without her princess. My heart rests in prayer for Gabriella's heart donor, and Abbie's family, as they remember their loss 2 years ago today. Please lift your prayers of rest and remembrance to her family with me as we remember a little life gone too soon.

We love you, Abbie.

Another biopsy

I was trying to avoid it mentally, but the anxiety has settled in.

Gabriella has her follow up biopsy tomorrow 4/12 for her most recent rejection episode. We were so shocked to find she was in rejection in February and our prayer focus for tomorrow is little to ZERO rejection in her cells. We are faithful that the steroids worked, and the fact that she showed no function loss over the last 2 months is very encouraging!!!

As soon as I get results, I will update! Please be in prayer for her and her amazing little heart tomorrow!!!

Just another day...

It's been almost a month since we discovered Gabriellas rejection on her annual biopsy. We are still on her steroid regimen, weaned down now to the lowest dose she will be on for a few more weeks. We have endured the moods, the appetite, the emotions, the energy and everything else associated with taking such a big steroid dose... and thankfully through it all her precious angel heart is still sparkling! We will return to clinic this Thursday for another ECHO and EKG (2 weeks from her last one), but I am not expecting to hear anything other than good news from it. After the beginning of April, Gabriella will have another biopsy to see how her heart tissue reacted to the steroids.

PJ got tubes in his ears a couple of weeks ago and it was the best thing ever! He instantly could hear better, his speech is improving again (it was beginning to decline) and he is sleeping much better too!

Otherwise, things have been good! Despite everything, Gabriella has been doing great in school and continuing dance class. We continue to stay super busy with day to day life, and I wouldn't trade it for the world! We are going to enjoy this week of spring break while the weather is still being kind in the desert, and praise God for every day He gives us!!!

Here are some recent photos since it has been a while. :)

Too cool for transplant clinic

Gorgeous....

My loves after church

Could I be any more blessed? I think not.

An afternoon at the Arizona Center

My #1 guy... I love spending my days with him!

You say "I don't know how you do it".... this is why.

This one is for you, Abbie! 

Rejection follow up

Gabriella's rejection is graded at a 2r, moderate rejection. I for sure thought it would be less than that! What sets it apart from the rejection she went through last June is that this time around, there is no function decline. The pressures and pump of her heart is normal and strong, so it is only at a cellular level for right now. Since her function is good, they are treating the rejection with high dose steroids at home and we will go in weekly for ECHO's to watch her function. If there is any loss, of course, we will have to pursue a more aggressive means of treatment, but until then we can go about life normally and pray the medications work!

Thank you to everyone for reaching out Friday when we got this news! It was so unexpected and I am so blessed to have you all still ready to rally around Gabriella!!

Biopsy

Wednesday, Gabriella had her routine annual biopsy to check for rejection. Her function, pressures and arteries looked fantastic!!! Today, however, I got a call to find out that surprisingly her biopsy came back from pathology showing rejection. We will be returning to Phoenix Children's today for at minimum 3 days to try and protect this sparkly heart. Our team here is in communication with our team at Loma Linda, formulating the best plan for this.

Asking for your fervent prayers over her for healing and protection!!!!

Gabriella's 7th Birthday

Blessed every day by having another 24 hours of time, we were able to celebrate another birthday milestone this weekend! Gabriella turned 7 years old on Saturday January 14... something that without the ear of her pediatrician, talent of her surgeons and selflessness of her donor family would not have been possible. This is her 2nd birthday since her heart transplant, and we couldn't be more grateful to have had it!

We had a little get together at the park with some friends and family, and just enjoyed time united again to celebrate this moment. Our family, friends and all of you reading and involved have been pivotal to this journey and Paul and I thank you again and again!

Here is last years post with old pictures of our princess! http://www.gabriellasheart.com/2011/01/blessed-birthday.html

And here she was on her birthday, at a photo shoot for Make-a-Wish Arizona Chapter! How did we get so lucky to have not only a daily miracle in her, but an amazing little boy as well?

Job 5:9 He performs wonders that cannot be fathomed, miracles that cannot be counted.

Jesus>Religion

Came across this today and it is remarkable. Had to share!

"If grace is water, the church should be an ocean. Museum for good people, a hospital for the broken..... ".



You can download the full text here: http://www.box.com/s/z3k53ec3ssbo800ppeld

First clinic of 2012

Gabriella's clinic went well yesterday overall. She is a growing girl with no major issues to be worried about!


We are still dealing with post-rejection recovery (yes, 7 months later...). It takes a LONG time to wean off medications used to battle rejection and transition the heart to it's "normal". Baby steps in weaning and testing to make sure the heart hardly notices the changes. We are finally weaning her steroid, which is the big indicator to see how her heart is going to hold up on its own again. Once it is completely weaned off, they will do another biopsy to see how her heart reacts to it. Will rejection reappear or will she be in the clear? Until then, she will remain on all of the heart failure meds they added to her medication list in June.


Her ECHO showed overall good function, but noticing increased mitral valve regurgitation. Her next cath/biopsy is on 2/15 to see if rejection resurfaces off steroid and check status of her coronary arteries, but we will be watching her valve issues via ECHO until then. It could be a new baseline issue for her heart as a result of the rejection she went through, but if it remains minimal, she can manage like that.


But for now, we focus on her turning 7 next week!!! What a blessing to have another birthday!! She is amazing... And so strong! Thank you to everyone still keeping her and our family in your prayers! We could use a little extra as the new year begins and as we face this upcoming biopsy! Praying for ZERO rejection!

2011 Year in Review

January
Gabriella turns 6!!!
Gabriella started homebound Kindergarden
Make-a-Wish was reactivated and Gabriella re-wished for the Disney Cruise

February
Paul & I celebrated our 9 year anniversary
Genetic testing came back with some pretty great news!
We did a 10k for heart defects in Ethans Run
Celebrated Valentines day with our little ones at Buca de Beppo

March
Paul & I served dinner at the Ronald McDonald House in honor of what would have been Abbie's 4th birthday.
PJ started T-ball

April
We moved!
I turned 29
We took a trip to California for some beach time, Sea World and clinic at Loma Linda
Spent Easter with our family at Restoration Covenant Church

May
We celebrated Gabriella reaching 1 year post transplant!!
We also kept our hearts close to our donor family, who also faced one year without sweet Abbie


June
Gabriella went into rejection and we spend 15 days at Phoenix Childrens

July
Took a staycation for my moms 50th birthday to a local resort and water park!

August
ZERO rejection biopsy!
We were blessed immensly with Big Give gifts for Gabriellas Wish Trip
Paul took a guys only weekend to Tombstone
Both kiddos start dance class

September
PJ turned 4
Paul turned 30!
We spent the most amazing 9 days together as a family on Gabriella's Make-a-Wish trip
Gabriella starts school!!

October
Gabriella has her swallow study done showing a weak swallow
Halloween we had a little Captain Hook and Rapunzel!

November
I took a weekend with my sister and sister-at-heart to Six Flags
Gabriella received her Ironman medal from Bob
Enjoyed Thanksgiving with our families

December
Christmas tree, cookies, Santa and too much food!

Merry Christmas from us to you...

We tried to send out as many cards as possible, but here is a virtual card for anyone we didn't get to send one to! Merry Christmas and God Bless!!

Slow Down

I love all the chain letters and quotes that go around in my heart mommy community. I saw a precious one today that was too amazing to share. My posts are so infrequent here nowadays, I was hoping to bless someone with this story!!

“Tomorrow morning,” the surgeon began, “I’ll open up your heart…” 

“You’ll find Jesus there,” the boy interrupted. The surgeon looked up, annoyed. “I’ll cut your heart open,” he continued, “to see how much damage has been done…”But when you open up my heart, you’ll find Jesus in there.” The surgeon looked to the parents, who sat quietly. “When I see how much damage has been done, I’ll sew your hea...rt and chest back up and I’ll plan what to do next.” “But you’ll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You’ll find Him in my heart.” The surgeon had had enough. “I’ll tell you what I’ll find in your heart. I’ll find damaged muscle, low blood supply, and weakened vessels. And I’ll find out if I can make you well.”You’ll find Jesus there too. He lives there.” 

The surgeon left. 

The surgeon sat in his office later, recording his notes from the surgery, “…damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: painkillers and bedrest. Prognosis: here he paused, “death within one year.” He stopped the recorder, but there was more to be said. “Why?” he asked aloud. “Why did You do this? You’ve put him here; You’ve put him in this pain and You’ve cursed him to an early death. Why?” The Lord answered and said, “The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow.” The surgeon’s tears were hot, but his anger was hotter. “You created that boy, and You created that heart. He’ll be dead in months. Why?” The Lord answered, “The boy, My lamb, shall return to My flock, for he has done his duty. I did not put My lamb with your flock to lose him, but to retrieve another lost lamb.” 

The surgeon wept. 

The surgeon sat beside the boy’s bed; the boy’s parents sat across from him, The boy awoke and whispered, “Did you cut open my heart?”Yes,” said the surgeon. “What did you find?” asked the boy. “I found Jesus there,” said the surgeon. 

Author Unknown

I pray that your December has been amazing so far. Don't let the stress of Christmas cards, gift buying, parties, baking and obligations fog your view. SLOW DOWN!!! What God wants you to be blessed by during this season is what is right before your eyes and God has a purpose for your life!! So take some time and put all the tasks aside and go look at Christmas lights with your family, enjoy sipping hot chocolate in your pajamas by the tree or sit down with your kids and make some hand made Christmas cards!

Be blessed everyone!!!

Ironman

For quite some time now, we have been in connection with a man named Bob on Twitter, handle @Heart_Inspired. Quick story on him, he was found to have a CHD in October 2009 well into his mid-50's that went undetected his whole life, and had open heart surgery in December 2009 to repair his defect. He was/is an endurance athlete who was without a doubt kept alive through all of his athletic life when his heart defect should have taken him. God had a purpose for this man...

Bob was an athlete before for many wonderful reasons, but none more important than his reasoning now. He runs, bikes, swims and competes against himself for children with congenital heart defects. He does it for the little ones who were taken too young by their defect, for ones who are fighting through surgeries or hardships and ones who have conquered the most common and fatal birth defect, CHD. He dedicates his events to them, feels the wind for them as he runs and uses their heroism to get him through a difficult moment in a race. He is a man with compassion and dedication to what he believes.

This weekend, Bob came to Arizona to compete in what he says is the most challenging even yet. He completed the Arizona Ironman with a fantastic time of 16:33 alongside his son, also a CHD survivor. We had the honor of meeting him and his sweet wife tonight before he returned to Colorado and while he kept speaking of how Gabriella was an inspiration (which I completely agree) I could not get over how inspiring he is. His humbleness and determination is remarkable. He has beat the odds and has vowed to make the most of the gift he has been given. He truly has a heart for God, in more than a spiritual way.

Bob gave his Ironman medal to Gabriella, stating "Believe me, Gabriella is the true Ironman". It was a unique moment, knowing this man spent not only years and years of training but 16 and a half hours yesterday swimming 2.4 miles, 112 miles on bike and a full 26.2 mile marathon... and handed over this trophy to my little girl. We are honored to be the recipient of such a deep and meaningful gift. Gabriella is truly inspired also, and cannot stop talking about what he did. She is so proud of him.

You can do anything you set your heart to. 

Bob's blog can be found here: http://www.heartinspired.org/ and on Twitter as @Heart_Inspired. Please follow and support him in his journey as he inspires others!!!

Gabriella updates

Because I have been wordless on my blog, I have missed some updates.

Gabriella had a swallow study done last month, because it was a mommy vibe of mine that her coughing and choking issues were related to her stroke. Sure enough, she has a weak swallow reflex. Her trigger to close off her lung region when swallowing is delayed and causes food and drink to pool right at the opening to her airway. She is successful in clearing out what is there but runs a risk for aspirating! We have some not so easy techniques to practice and help the process. One is always sitting while eating or drinking. Hard for a girl who is VERY active! And the other is no talking for 10 seconds after swallowing. Even harder for a girl who is VERY talkative!We aren't sure if this will improve or not, because of the muscle damage done to her body from stroke, but as always we are hopeful.

Clinic appointments are going well for the most part. It is all a balancing act with medications, but we are close to target on everything! She is growing perfectly and we do not have many concerns at the moment. Her next biopsy will be in February, as we wean her down from steroids and watch what her heart tissue says to that.

School is going smooth. Her school has been amazing working with her IEP and ensuring that she gets the extra help she needs on reading and writing. She is a wiz at math, and is quite the little gossip girl. We have dealt with minimal cootie issues, for which I am so thankful!!!

PJ is doing fantastic as well. He is in dance class (hip hop) and still plays Tball. He is a smart little guy with more daily energy than I will have in the remainder of my lifetime.

Thanks for checking in!!