Thursday, September 4, 2014

My Little Girl

To any faithful readers still out there occasionally checking or receiving updates, I wanted to share something so special to my heart.

Gabriella is now 4 years 3 months post transplant at 9½ years old. She is doing wonderful, simply stated. Thankfully, the news I have to report in relation to her heart is minimal. When you have a medically fragile child, this is the best thing you can ask for. She will go in for her annual heart biopsy in October, and we have all faith it will come back strong, healthy and perfect. Our precious guardian angel Abbie is always with us!

She danced in her recital this past June and took my breath away. The song, the dedication, the strength... it stole any bits of me it could. I wanted to share it with you all, and pray this finds everyone happy, healthy and full of adventure!


Friday, May 17, 2013

Sparkly Heart Birthday #3

I have the biggest smile on my face today.... just knowing I can say THREE YEARS makes me well up with the happiest of tears!

Gabriella blew me her daily kisses today as she walked up to school.... I caught every one as I do every day, but today's were extra sweet. :)

It is a day of survival, a day of appreciation, a day of remembering the steps it took to get where she is today.

I love you, Gabriella!!!!




Wednesday, May 15, 2013

Another year, frozen in time.

Another year passes. Life moves forward, people continue to age, children continue to grow. But the sweet face of Abbie will remain frozen the same as it was three years ago today when she left this earth too soon. And even though that outdoorsy princess is no longer with her mom, dad, sister and family on earth, her legacy continues every single day right before my eyes as her heart beats in Gabriella.

Thank you for being the most amazing guardian angel, sweet Abbie. 

Please join me as we keep her family in our thoughts and prayers today as they remember this day as the day they said goodbye to their little angel.

Monday, January 14, 2013

Another Amazing Birthday

Today we celebrate another beautiful milestone in Gabriella's journey. While every day is a huge accomplishment, birthdays always give us that reminder that we are not entitled to another year but blessed to be given it. I look at everything this little girl of mine has been through in her little lifetime and can hardly believe that all of it was fit into eight years. Clinic on Thursday showed a completely healthy and strong little girl, which to me was the greatest news as we enter a new fresh year and another year of life for Gabriella!!!

Mommy loves you, Princess G!








Tuesday, December 25, 2012

Merry Christmas 2012

I hope you all have a beautiful Christmas.... all is well here and Gabriella continues to be strong and healthy. I couldn't ask for anything more.....



Thursday, October 25, 2012

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!!

Thursday, May 17, 2012

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

Tuesday, May 15, 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.


Wednesday, April 11, 2012

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!!!


Monday, March 12, 2012

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! 



Monday, February 20, 2012

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!!

Friday, February 17, 2012

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!!!!

Saturday, January 14, 2012

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.

Wednesday, January 11, 2012

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


Friday, January 6, 2012

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!