Much overdue update…..

GOD has surely accomplished a major miracle in our sights and we  in shock and awe!

To re-cap briefly, Gianna had heart reconstruction surgery (a bi-ventricular surgery) exactly one year ago. She was hospitalized for exactly 6 weeks.  

She was doing very well up until 5 months ago when her health started to decline.

She was getting more tired, more blue and more winded.

Her echoes showed a back-flow in one of her new valves….but we were told that it wasn’t emergent and needed to be monitored…no one knew the storm that was brewing and what couldn’t be shown on a standard echo.

Well, we were approved by her cardiologist to take Gianna on her much anticipated and much planned Make A WISH trip. So many precious memories….but Gianna was definitely starting to show more outer signs of (what we did not know at the time) heart failure.

We came home and she had swollen up with fluids (5 lbs of fluid) ……..

Neither urgent care or her peds thought she was in heart failure because she was not showing signs of fluid in her chest. THIS WAS VERY DECEIVING! 

They gave us antibiotics and sent us on our way……

(for those that dont know, Heart failure symptoms closely resemble VIRUS and COLD symptoms)

I took her to the ER and there they saw that her pacer was firing abruptly (her pacer box was what had been saving her life).

THey then Rushed us to Children’s Hospital of Philadelphia where the chaos took over.

I can’t even begin to tell you how bad those first few nights were for my Gia…if I try to put it into words, I just start weeping.

Her Catheriztion revealed she was in complete heart failure with a failing valve and heart pressures through the roof. She was immediately started on heart IVsupport meds and aggressive amount of diuretics to get some fluid off her body….

It was determined and recommended by ALL involved that Gianna would need life saving surgery done at BOSTON CHILDRENS by her surgeon who originally did her Bi-V repair last year.

We were in shock…mad, sad and I WAS NOT mentally prepared for the journey ahead. BUT, it was not about me or anyone else….it was about saving Gianna’s life.  

We have learned that It’t one thing to go into a well-planned and prepared for surgery (HARD TOO) and another to be thrusted into a crisis completely unprepared….feels a little bit like whiplash.
We would not have been able to walk thru this fire without the abundant prayer support.

BUT, oh how thankful I am that she had that life-saving pacer, that she was showing outward signs of her failure that alarmed us and that we had competent FAST medical help!

After 2 weeks of managing to get Gianna stronger and stable for transport, we were airlifted by an incredible company who came to our rescue (AngelMed Air). That was another miracle

So, once we arrived at Boston, they were so pleased with how stable CHOP had gotten Gianna with her heart support
 she had lost many lbs of fluid with her diuretics.
There was  a need to get her into surgery asap, so after two days of getting settled and prepped, she had her 8 hour RISKY surgery.
It was so VERY HARD TO SEND HER INTO THAT SURGERY!
to be back in that place where you are begging and praying for GOD to please keep your child on earth and not to take her.
 To be SO very at HIS mercy of whatever HE chooses. He is GOD and I am not…a hard hard surrender, and I hated it.

Unfortunately and “fortunately”, they used a mechanical valve to replace her valve. This was the only option. Her tissue valve had been so aggressively attacked and rejected by her body that putting another tissue valve in meant she would be right back where she was …and even sooner.

So, we were left with no other option then the mechanical valve. Her surgeon does not like using these valves because of their risks, but he had no choice.
I wish she had a tissue valve….but we praise GOD because this mechanical valve is saving her life!!!!

However,  Gianna has to be on blood thinners indefinitely…..
This is very serious.
If she does not have her anticoagulation therapy (being monitored for blood clotting levels weekly and adjusted meds) then her valve could easily fail with a simple blood clot.
She has to be closely monitored by weekly blood draws and leveling of meds so she doesn’t have blood that is too thick that clots, or too thin and risk bleeding internally.
Very fragile lines to walk…and it breaks my heart…..i have much anxiety, truthfully.

BUT….every time my heart starts to go there…to worry about her future. I stop…because HOW can I complain….

 I HAVE TO LOOK AT HOW FAR SHE HAS COME AND WHAT GOD HAS DONE!!!!

SHE IS ALIVE.

HE USED THIS MAN to perform a miracle on my daughter…to save my daughter’s heart.

the amazing Dr, Emani

…over 3 weeks ago, We thought she would possibly be added to the transplant list, we were told her heart may not be savable …but by GOD’S miracle he sustained and saved her heart muscle.
THIS IS A MIRACLE.
HE IS MIGHTY TO SAVE!

TOO MANY MIRACLES to list…..but you must know that your prayers were answered. Gianna is home….her heart is beating strong (that mechanical valve is loud!!) and she is going to thrive with her own heart!!
I am so thankful to be home….re-entry is never easy,  but filled with so much gratefulness and joy among the chaos!

THANK YOU friends, family, prayer warriors ALL OVER THE WORLD for how you lifted us up, how you stormed heaven’s gates on your knees for our precious Gia.

THANK YOU for feeding my family, for texts, messages, letters, care-packages, cleaning service, GoFUNDMe page, and for those that came around my kiddies at home and supported them in more ways then one!
FOR OUR INCREDIBLE GRANDPARENTS and how you filled the gap and were an answer to prayer and stepped up with so much LOVE and sacrifice.

For our church family, for how you came around us…around Brian,  and held us up and provided for us.
We are so grateful.  Words can’t express…….just so humbled.

Gianna has a post-op Cardiology visit tomorrow (Tuesday) and we are praying for encouraging results!

She is so brave and has endured so much and I can see how that trauma has been brought home with her.  Please pray for her emotional healing as well.

MERRY CHRISTMAS…..
We can’t imagine a better Christmas then being together and all alive and well.
We still  need to get a family celebratory photo…LOL

but, look at this smile……nothing compares!