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, May 28, 2011

Thoughts Become Reality

            The week of May 16th was a very Real one to say the least for us... That monday we met with Dr. Galindo at the Childrens Heart Center of Nevada, he is the man that will be responsible for any intervention surgeries Scarlet may need after her initial surgery. We heard more in depth what her "Hybrid" procedure will be, due to her most recent diagnosis of the cardiac abnormality.. most will remember it as the so called "sparklies." Hearing what Dr. Galindo had to say about the first surgery she will need helped us put it more into perspective and be reassured that the Doctors have a plan for our little angel. Later we met with one of our nurses that will be helping out with Scarlet, Mia. She took us on a tour of the Sunrise Children's Heart Hospital where we will deliver. We went through numerous floors of the hospital touring the NICU, seeing where our little angel will be taken once first born. She'll be given the appropriate attention, medication & preparation for her surgeries, as well as gaining weight in her case. Next we went up to the PICU (Pediatric Intensive Care Unit), which is where she will be taken after her first surgery to recover as monitored. Once she's taken to the PICU floor we can stay at the hospital with our little monkey. 
            As you know Scarlet was underweight by about 2 or so weeks, at the first ultrasound we found that out she was weighing about 3 lbs 6 ounces... Chalking up the protein I did my best to try and help her grow, per the Doctors orders, unfortunately at the latest ultrasound we learned she hasn't grown much more.. she's now 4 lbs 1 ounce.. Its true that the ultrasound could be off, which we cross our fingers and pray for but its unsure till she comes out. Because of her weight my doctor wants to take her out close to 37 weeks. Right now were at 34 weeks 6 days almost 35 :) That leaves 2 1/2 weeks till scarlet is coming... June 15th! We did indeed get to pick her date and unless she wants to come out earlier were scheduled to go in the night of the 14th when we will start induction for the 15th being her due date!!! only 17 SHORT DAYS!!! As excited as we are to see our little angel, were also nervous as to how it will all go, but with faith and strong prayer we believe that baby scarlet will be just fine. She is our fighter. 
             Hello everyone! At the last ultrasound Scarlet also decided to give us a little wave. As I studied the pictures I noticed in the center of her hand there appears to be a heart.. Me and Vin take that as our sign that baby girl is going to be alright. Not every day is promised, but it can be cherished. Nerves are rising, excitement is bubbling and were very eager for these next 17 days to fly by and meet our little angel! Although some may not like Oprah she's brought me a sense of peace the past week with her farewell shows.. In one moment she talked about "Surrendering" something that got me is when she said... "I don't get it God, but I know you do." How perfectly simple that is.. I don't get why this is happening to our special little monkey, but I know he does.. he has a plan. She also sang the song "I surrender all to you, I surrender all, all to thee my blessed savior , I surrender all" All we can do is pray for the strength, God can dream a bigger dream for us then we can and I know no matter what the outcome we will be alright and carry on. "When you've worked as hard, done as much, tried, strived, hoped, just surrender...When you've done all that you can do and there is nothing left for you to do, give it up, let it become part of the flow. Live in Letting Go, you are NOT alone." -Oprah Winfrey. Thats exactly what we have to do. We have done all we can do for baby Scarlet and at this point her destiny is what God has planned for her. We surrender our lives, our path, and our journey to God and hope his plan for us includes our baby girl. 
         Unless things change with in the next 17 days this will most likely be the last post before Scarlets Journey begins. Thank you for all those that have followed us up till this point, and supported us in every way, prayer, donations, and such. If you know about the baby shower and are planning on coming, its still going to take place on the 18th.. Either natural or C-section I should be recovered and even though baby scarlet will not be there or in my belly she will be on this earth and we will have many many photos to share. The maternity shoot still hasn't taken place, it will happen next sunday just one short week before scarlet comes :) Thank you again for all the love and prayers we have felt. Don't hesitate to ask questions or comment anything, our blessings are with you, hope every one is great. 

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith


2 comments:

  1. Scarlet,

    So many folks who don't know you or you mummy and daddy are praying for your heart and your dr's and entire medical team, praising Jesus for all the research that has gone on to help babies such as your self and mine, to recover from these issue. God bless everyone who loves you!

    Beverley, and Leyda

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  2. I was just there at childrens heart cener i dont know you presently but would have love to meet you my angel serena was born in sunrise too aug 25 2009 to a heart condition too..her doctor was doctor evans and her surgeon was cicollo..he is so good..my prayers and blessing your way i live in reno now..my angel lost her battle on mar 15 2010 to hyperthrophic cardiomyopathy..

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