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.

Sunday, August 7, 2011

Scares & Prayers

 Look at our monkey, NO OXYGEN! August 4, 2011 we came in to see our Scarlet on complete room air, satting wonderfully in the high 70s. We were under the impression that she was thriving. Unfortunately to our dismay she was actually doing worse on the inside. Her heart echo from that week had changed significantly more from the previous week. So, because of this they did whats called a balloon septostomy opening a little valve in her heart from 1 mm to 6mm. They took her down to the Heart cath lab, she had to be reintubated and it was done within a few hours. When we went back up to see her we noticed her leg was triple the size it should be and she was ghost white.. Her sats were OK, not the best and she was requiring much more oxygen then before. We figured it was just her little body under stress, well... the next day after visiting we decided to go see a movie to calm down a bit from all the emotions. Little did we know that was a terrible idea, our phones on vibrate caused us to miss nearly 10 calls from NICU asking us to come in immediately. Half way through the movie I checked my phone and next thing, we were up and running to the car. Scarlets stats had dropped into the 20s! She was taking a turn for the worst. Tears running down my face, racing in a car to the Hospital, we said a prayer. By the time we got to the hospital she had stabalized a little bit requiring more oxygen and still very pale, they also discovered she had pnemonia. Her leg was still triple the size and it was due to a blood clot from her pic line in her leg so, they had to shave both sides of Scarlets head to get a new Pic line in, poor baby!             
 She is still in very good spirits and nearly 72 hours later, 3 different antibiotics, and 2 blood transfusions our baby girl is looking much much better and is being weaned slowly off her intubation. Thousands, even Millions of prayers and strong faith have got us to this point. Without our Heavenly Father and angels guiding the doctors and giving Scarlet the strength our baby girl may not be here today fighting her battle. Shes not happy with her intubation tube, shes use to sucking on a binky and things when shes mad so hopefully that will encourage her to fight harder to get it out. Were so blessed, were still staying at Stevens Hope and even though we dont have a lot of money to our name were trying to give back as much as we can. Vins mom Kim applied for something called AeroCares through her organization and its where they give money to families in need that work for Aeropostale. We were accepted and the money recieved is in the process of going to Stevens Hope. This organization helps so many families, who are absolutely incredible and we are so blessed to be part of their Special Family. <3 Its hard not working and not having any money but were trying to find jobs currently and possibly finding a local news station to come do a story on Scarlet and Organ Donation. We want to help spread awareness the best we can and get these amazing childrens stories told, their voices cant be heard yet so its up to heart parents to speak up. My mind has been going a thousand different directions with all the Scares and Prayers weve had this past week but I want to give back in a big way. Not sure how yet, or even when but I pray that the Lord gives me the opportunity to spread the word and give back to all the amazing people in our lives.  Still scatter brained Im not sure what else to mention, of course I can always answer any questions you guys may have so for now I will sign off saying once again, Thank You. For all the love and support you guys give, for the thousands of thoughts and prayers you send our way, they are much needed and felt. We have complete faith that our angel will make a full recovery and have all the energy to wait the long wait she still has. Scarlet is almost 2 months old, shes 7 lbs, 21 inches long, and the biggest love in the world. My pride and joy, my strength, she is my Scarlet Marie Griffith, Half hearted Angel who continues to fight the battle from leaving a piece of herself in Heaven. Here are some more pictures to enjoy before she took her journey this week. Finally getting her in outfits and seeing her little personality.<3 thank you all again.

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith        


  1. What a scare! I'm glad it looks a bit better now!
    She is such a beauty! :)

  2. Sat's in the 20's... YUCK!!!! I know that had to scare you! Our Annabelle is just a little over a year, and she had her heart transplant in April (she was heart listed in January.) She was a hypoplast baby too... was never able to have her Glenn due to various reasons. We will definitely be praying for your Scarlet!!!

  3. Hi
    My name is Jenna and I came across your site. Your daughter, is so precious and special, and she is an earthly angel. She is a beautiful, cute, determined, strong and courageous, fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

  4. I just found your blog through Bowen's Heart facebook page. I will now be praying for Scarlet, for God's healing and comfort for her and for you and your husband that He will give you peace during these times of trial and lastly that He will give all the doctors and nurses who help Scarlet the wisdom and steady hands to care for her. She is a beautiful little girl!