Hypoplastic Left Heart Syndrome

Throughout these blogs you will see me refer to Scarlets congenital heart defect as HLHS. This stands for Hypoplastic Left Heart Syndrome, a child with this defect only has the right side of their heart. When Scarlet was born we were under the impression shed go through the standard three surgeries...At just 3 days old she underwent a procedure that showed her coronary arteries were not what they should be and IF the surgeries were successful she could have a heart attack at any point in time... which left us with Heart Transplant. At a week old she had a pulmonary Artery Banding to help preserve her life during the wait.. She also had a balloon septostomy at 2 1/2 months to help.. we almost lost her 4 times, and after waiting 3 1/2 months she got her second chance at life. September 26,2011 an angel entered our daughter and saved her life. Our daughters life will be treasured no matter the length of time she may grant us, though we hope for a entire lifetime. "Enjoy life today, yesterday is gone, and tomorrow may never come." If you'd like to know more about Scarlets condition please feel free to read more of the upcoming blogs.

Saturday, February 18, 2012

Time Passed

Well.. first I want to apologize for the length of time in which I let go by before I updated this. There has been craziness, as many know..

After Thanksgiving we returned to our temporary home in California. Everything seem to be perfect, but it wasn't.

In December an echo revealed that scarlet had excessive scaring on her aorta.. And Transplant admitted us then and there for an emergency ballooning procedure. Poor Scarlet couldn't eat for 8 hours and was screaming bloody murder the whole time.. She screamed so hard she passed out a few times, which broke our hearts but the procedure went by without a hitch. Which prayers answered we are more then grateful for.... Once out of the hospital scarlet got to come back to the apartment were we got to do some new things :) One which was starting food, Mommy "yay", Scarlet... not so much. hahaha, she now eats like a champ but starting out was rough we got tons of this is gross faces, along with gagging herself so she didn't have to taste it. We also did more happy tummy time, walks, more quality time and therapy with mommy and daddy, the little things which some may find silly but to us mean the world.

Still, life continued on between Loma Linda and Vegas for weekends, before we new it, Christmas popped up like a jack in the box... Scarlet got to meet Santa for the first time thanks to our wonderful Charity Stevens Hope for Children throwing the christmas party were heart buddies, Lexie and Zachary got to take pictures with scarlet and santa. Stevens hope also blessed us with a bag of presents from them, making our holidays perfect.. We spent Christmas at home with the family and enjoyed every minute of it.

After the Holidays we planned on returning home to vegas at the four months post transplant date Jan. 26,2012 when another unexpected occurrence took place. Scarlet got a double ear infection, amoxicillin just wasn't cutting it and augmenten was started. Turns out Scarlet is allergic to that particular antibiotic and it took two weeks of puking up everything she had and loosing two pounds to figure this out and land us back in the transplant office and being readmitted for vomiting in dehydration. Once in the hospital her rash started to appear, they stopped augmenten which luckily did work aside from making her loose weight and dehydrating her and benedryl was the easy fix. We were told once her vomiting was under control we could return home... But oh to the contrary. 

Poor Baby.
Scarlets Coarctation was tightening again in January and this time they want to do a full repair.. Emotions fly high when they tell us they're going to take her in now for a open heart surgery...and then arguments between some doctors and they tell us were now going to wait, for how long??? We never get our answer.. just simply to stay in the area. Well Stevens Hope then needed our apartment for another family and since wed already been there our 6 month stay we had to find a place to go.. But where would we go?? No money, no jobs, no family.. We prayed and prayed, we stayed at the ronald mcdonald house for $20 a night about 4 nights, when our prayers were answered. I receive a text from an old NICU family of ours wed met back when scar was waiting for a heart, they jumped on our journey wagon when we awaited the arrival of their son Emery to be born. Cindy, Emery's mother said she had read about our situation and would love if we would come live with them till it was time to go home. What a blessing they are to our lives, they sheltered us, fed us, even raised money for us, and scarlet had a new little boyfriend who she was/is quite fond of.. we definitely got to make friends for a lifetime and what an extreme testimony that gives me in "Everything happens for a reason.":) 

Scarlet & Emery Jay <3

During our wait to return home we got to visit our heart sister Jasmine who received her Transplant in November and was finally out of the hospital, boy was that exciting for the whole family. Both of the girls being from vegas we wanted them to get aquatinted and it was such a wonderful experience to see them interact with one another.. Holding hands, laughing, staring at each other its as if they knew what they had gone through together.. Which was just absolutely beautiful to witness, two miracles meeting and loving each other so much. These girls keep me strong.
We stayed with Cindy, Rick and Emery for about a month when Scarlet started to turn around, she kept food down, they switched some meds around to help her reflux (turns out she also became immune to her cellcept which she was puking up) so all of these things helped her keep her weight on and before we new it they were saying we could be released home to vegas. The transition was bitter sweet, to say goodbye to our new friends, and even old friends and say hello to our new but old life again.. Scarlet turned 8 months shortly after returning to vegas, as well as celebrating her first valentines day :D The best valentine I could ever ask for she is always so smiley and loving...
Currently we are waiting for a call from transplant to schedule her next open Heart Surgery to repair her coarc fully, and hopefully completely fix and resolve this issue. Scarlet has a pretty bad ear infection but still manages to smile past it at anyone and everyone she sees. Shes getting so big hard to believe shes almost 5 months post transplant and 4 months shy of a year old what a miracle shes been in our lives. I hope to update the next blog with success of a surgery, or even a date of the surgery. I promise to not keep it so far apart this time and follow up with a blog every now and then. Thank you for continued prayers for Scarlet and her Heart buddies, we love you all and love all the support you show us. Hope that the start of your 2012 is as miraculous as ours <3
With all our love, 
The sock monkey Family,
Vince, Alexis, Scarlet, and Adley Griffith <3