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, July 16, 2011

A long wait ahead

       Hello all! Sorry its been so long since weve updated, its been a busy 5 weeks, the good news is... Were still fighting strong. Our angel is past her first OHS (Open Heart Surgery) where they put bands on her pulmonary arteries to restrict blood flow to the lungs and back to the heart, to buy time for the transplant wait. She went through it with flying colors, and was back in the NICU the same day.. Her scar is healing magnificently! A week later, at just two weeks old she took her first plane ride over to Loma Linda, California, where almost immediately after she got extubated, meaning her breathing tube came out!!.. Loma Linda is now our new residency while we wait, it was all very fast, the transition over here. With the wonderful help of our social workers we were set up with an amazing organization called Steven's Hope. Stevens story brings tears to my eyes, if you'd like to read it please visit this website. (Stevenshope.org) His parents wanted to help other families in need and have 2 bedroom apartments they sublease to families, us being one of them. I can't even describe to you this blessing, and the weight it lifts off our shoulders. When Scarlet recieves her heart we have a safe enviornment (home away from home) to bring her too for the 4 months we must remain in Loma Linda. The wait can be long, the longest wait theyve had was bout 7 months just to get a heart. Just getting on the transplant list seemed long. We ran into a few issues, Scarlet having CMV being one of them, after many tests, including lumbar puncture and MRI's they discovered its more or less "asleep" and it would be safe to continue with the evaluation process. It took a week, and many tests to get her there but were on the list!!! July 8th we got the call from a transplant coordinator, and a day later we recieved the official letter. 1A transplant status <3
           Recieving this letter, we immediately bowed our heads and prayed... Yet again another blessing and weight lifted off our shoulders. Our Heavenly Father is here for us and we feel that. Our angel girl is now off IV fluids and completely on breast milk!! :) Not only is she on breast milk but shes taking it straight from the breast, and when we cant be there, bottle! Something they told us she would never be able to accomplish because of her heart. She continues to prove the assumptions wrong and we cherish every milestone she completes. Shes up to her minimum amount which is 48 ccs, which she takes with no hesitation. Weve been able to give her baths and hold her more then ever imagined. We feel very lucky to get so much time with us. They reassure us that they want our wait to be as easy and normal as possible, and though it may be long were very blessed and thankful to be at Loma Linda University Medical Center. Were still trying to get her to gain weight, shes up to 5.5 lbs, the nurses have decided to add an extra supplement, a milk protein to help her and so far it seems to be working.

            We visit Scarlet everyday, I couldn't imagine not seeing her, we get to hold her and talk to her, shes always in high spirits. Smiles are her favorite thing to do for us, shes also found her voice. What a loud mouth this little fighter has, shes got the most adorable cry! We had Vins parents come and visit us about a week after being here and they got to hold her, which was amazing for us. We want all our family to get that chance. My wonderful mother came out here with us to help where ever she could and I dont know what we would have done without her, seeing our angel in our parents arms brings the most amazing feeling to our hearts. The same feeling fills our hearts when we hear from our family, that people who dont even know us walk up to them and hand them checks for our little Scarlet. Theres no doubt were struggling financially, Vin lost his job with the move, but that doesnt seem to be a major stress for us because of the amount of support we have. Dont get me wrong it is stressful trying to live off a small amount of saved money but every time we hear of donations, or even prayers our hearts simply melt and we start crying from shear joy. People don't HAVE to offer, or send money, but they do.. It reassures us that people are kind, loving, compassionate and supporting us through this hard time. I cant express our graditude to all of you that take time out of your day to read our updates, to pray for our scarlet, or even think about us, we know its not something you feel obligated to do, but do out of the kindness of your hearts. <3 So thank you, those two simple words dont really say it enough but we thank you from the bottom of our hearts.
             Scarlet is already setting an example for so many, and she proves her strength. We've met alot of wonderful Heart families through the internet, and even at the NICU in Loma Linda and their support is incredible. We know our heart babies are amazingly strong, and we hope that what people are doing for us, we can do for other people. Recently we met a family thats daughter was born on the 4th of July and is going through the SAME EXACT thing as scarlet.. The surgeries wont work, so theyll do part of the hybrid with the bands and then she will be put on the heart transplant list as well. When we met this family it was like the world was lost, they were crushed, and with a few simple comforting words of positivity my husband spoke to them you saw the hope rise back in their hearts. We continue to talk to them everyday and make sure their angel is fighting on strong, we reassure them that we are there for them and know exactly what their going through and that it will get easier. Yes there are bad days, Scarlets having one today actually, but there are many GREAT days, and every day with our precious angels is a miracle and a blessed one at that. We cherish this journey God is allowing us to take. It sounds weird but we are grateful for this trial and were trying to embrace it anyway we can. Thank you all again for reading and staying close with our story. Ill do my best to make sure the time between the blogs isnt so long next time. Our angel is doing well and we appreciate the continued prayers. Hope all is well with everyone, we continue to pray for the donor families of all babies that make a second chance possible for all our heart transplant survivors. Please keep them in your prayers as well.

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith