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.

Wednesday, September 21, 2011

"Hope is Everything"

Our precious angel is fighting her battle as best she knows how, and unfortunately her time is wearing thin. Last time we checked in Scarlet had aspirated (choked on her milk and coded), since then shes been getting worse.. She was started on 6 antibiotics to try and help fight whatever infections she may have gotten. The pneumonia seems to have cleared up but then she developed something called NEC which is where her intestines become swollen and get blisters if those blisters were to pop that part of the intestine would die and her "sewage" would leak into her little body doing way to much harm. Luckily with the help and guidance of MANY doctors theyve gotten it to the point where they think she may fixed this and they may start feedings again. Scarlets heart function is worsening every day. She keeps retaining all the fluids shes getting because her heart cant work hard enough to get rid of it so shes getting super puffy which makes it even harder for her. The profusion is something we seriously worry about, her heart is beating so hard you can see it from across the room. Shes had more doctors then I can keep straight coming in and examining her everyday. Shes no longer on hold for a heart, we just need one to become available and she may have a chance.

Due to Scarlets loving looks and awesome personality she has picked up what the NICU calls Primaries :) Nurses that when they work, work specifically with Scarlet, thankfully we have what I consider the three best primaries at loma linda, theyve all worked with cardiac babies and they all just absolutely adore missy girl. They make hard days much easier on us, they know what to say to comfort and they know how to explain reality in a calm way. This week theyve been talking alot about the "what ifs" of our life at this moment.. What if scarlet were to go into cardiac arrest and couldnt be brought back. As hard as this is to hear, its definitely a possibility... no one knows what God has in store for this little fighter except for himself and scarlet. We are to come up with a plan of how we would want to experience her passing and although we all hope it never has to be put into action its something that we need to have just in case. Scarlet is three months old and to that age where she looks at EVERYONE. No matter whos talking that girl will follow your voice with her eyes, she loves looking at mobiles and watching you talk.. Sadly shes been very drugged the last week to try and keep her from wiggling and working harder then necessary to stay alive. Its definitely hard to see her lie there motionless, every now and then shell peek her little eyes open as if to say "Im still here mom&dad, dont give up on me yet," theres always that little twinkle in her eye that just melts my heart. They paralyzed her today for a few hours to try and keep her knocked out while they inserted a new central line, for some unknown reason her last one clotted and they needed a new one in ASAP. But she eventually woke up and gave me that look and all I could do was thank the Lord for getting her to this point. Although were not out of the woods, each little achievement keeps us going. Seeing her eyes are achievement enough.
Our media efforts are doing great, a friend created a page on facebook for scarlet called "Help get a new heart for Scarlet" and thousands of people have liked it. Over 6 newspapers have taken scars story on in California, Illinois, Oregon, and Vegas, shes had a couple radio announcements in Oregon and as of tonight shes had two TV debuts thanks to her grandmas! Channel 13 in Las Vegas as well as Fox 5 did a little segment on our angel and especially Organ Donation Awareness. We hope that in our endless efforts our daughter, along with her heart friends and others can be saved through organ donation. Its hard going through this but she has opened our eyes and hearts to a whole new world, a realistic world. We are not the only ones going through this. We know of 5 babies at Loma Linda alone waiting for heart transplants. Think of all the other hospitals throughout the US. Its disheartening. But were here to instill hope in others, I recently finished a book about this little girl named Sarah who had CF.. She passed away at just the age 13 and in the book her mother wrote, taught me more thankfullness and power of prayer in 2 weeks then in my 19 years of life. The last day of sarahs beautiful life she told her mom.. Hope is Everything. Its just that.. Organ Donation is going off Hope.. and Hope is Everything. As I sit here tonight with love in my eyes and Hope in my heart I can only wish that we have brought hope to others, that Scarlets story will be heard by millions, and her life will be given a second chance. If youd like to see scarlets TV segment go to this link (http://bcove.me/ly1mgw97)... and please consider going on facebook and liking scarlets page. Any bit of support gives us hope <3 Thank you for the prayers, they keep us going.

With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith


  1. Praying for healing for your precious little girl. I pray that God reaches his hand of healing down and removes the fluid from around her heart and that the edema will go down. Blessings of peace to you both.

  2. Praying for all of you. {{Hugs}} from the Netherlands :)

  3. I saw your story on the news here in Vegas yesterday. My brother in law was born 38 years ago with a severe heart defect. He received a heart 2 years ago. You may be interested in his story. He is also a musician and has the most soothing, peaceful piano music ever. His website is www.paulcardall.com where you can hear his music and purchase if you want or you can go read his blog about his heart defect/transplant at www.livingforeden.com. He is a huge advocate for children with heart defects and is a source of information and hope for many parents of heart babies. May God's love and peace be with you at this most difficult time.

  4. I watched the news and cried the whole time!! Scarlet is so perfect... I pray everyday she gets her heart!!

  5. Dear Alexis and Vince,
    I just saw Scarlets facebook page through another page and this is the first time i read the blog. Ill be praying for the 2 of you everyday but most of all Scarlet! Like Scarlet i was born with a heart problem. Mine was able to be fix via surgery and thankfully i have been fine since. I like you Alexis had my first child at 19. I was also one to say it happened because it was meant to be that way. I got married to my sons father when we were 6 months pregnant and have since been married for 3 years. I truely believe Scarlet will get a new heart and pull through. Her eyes tell a story and to me she is saying shes by no means ready to leave her mommy and daddy. She wants a full and happy life with the 2 of you. Stay strong and continue to have hope and faith, itwilling you 2 closer than ever and grow stronger everday together!


  6. I'm praying for your sweet little girl!!

  7. Hi to all from Children's Heart Center,all the doctors/nurses especially Dr. Rollins, Maria, and I are thinking of you all. Please come home soon!!!! We are excited and can't wait to see ALL of you. Kiss Scarlet and hug everyone for me! Love, Mia (aka Mya)