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.

Thursday, September 8, 2011

Emergency Miracle Needed

        On bended knees, tear filled eyes and extreme love in our hearts we need an emergency miracle.. Scarlet was doing great for the last 3 weeks and on saturday evening during a feeding she started choking and her heart plummeted to 40, Scarlets Primary Sandy had us put her back in bed and immediately started working on her. Scarlet was reintubated and was put on more meds to help her stabalize, she developed pneumonia and another UTI infection which put her on hold for the heart transplant list. The pneumonia caused her lung to collapse and with more antibiotics it recorrected itself although the antibiotics keep her on hold for this list. She has now overcame the collapsed lung but her breathing has gotten worse and a recent heart echo revealed that her heart has stretched and is failing much faster then they thought . Organ Donation is a subject not to be take lightly but is much needed in today’s world. Unfortunately, infants, children, teenagers and adults die everyday due to organ failure. Transplants are a second chance at life, and ones that are greatly cherished.
 
         We know donation is not an easy decision to make and asking parents to make this decision is not easy for us. Our only chance with her is if she receives a heart transplant, and quickly. Organ Donation is the most generous choice a parent can make when placed in the tragic situation. To give another a chance for life in the midst of it all is absolutely incredible.
We pray on bended knees that Scarlet has a chance at this life, that she may experience all that life may offer her. She is a joy to have and a true blessing to us, we did not think she would make it this far and we can only pray that by some miracle she can stay with us. We hope one day she can share her story with others and the selfless heroic efforts made by a donor family to save hers.
       The thoughts have crossed my mind lately of how unfair it is that baby girl has to go through this, but she knew what she the Lords plan was for her before she recieved this body and she came it gladly knowing these things. Im so proud of Scarlet already and I really pray and hope that she makes it, Im not really sure what wed do if we lost her.. It hurts me to think of this, especially so soon. My fighter is hanging on but were not sure how much longer she can. Our future and faith is placed in Gods hands, he has a plan, we can't give up and must accept whatever it may be.  Also we ask that if you or anyone you know has not yet signed up as an organ donor, please go onto DonateLifeCalifornia.org a non-profit registry and become a donor today. Scarlet and many other babies are not promised tomorrow, please help save another’s life and donate. Many depend on it. One lost child can save many lives. This is a short blog, I appologize, ive been working on contacting the media since we got home and Im needing to feed my hubby before we rush back up to the hospital. Please Please Please pray that scarlet finds a heart in time.
 
With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith
 

17 comments:

  1. my heart go out for you!!!! my godson was born 3 months early and went threw a lot... she will become a fighter!!!! i will put you in my prayers and on the prayer list at my church!!!!! hope all goes well and they find someone for yall!!!!!

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  2. Praying like crazy!!!! The waiting is so hard, this I know, and yeah. I understand, and am praying.

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  3. So sorry you and your family are going through this. No one can truly understand until they have been in the situation. Keeping you in my thoughts and prayers.

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  4. Reposting this story to my facebook...i hope this goes viral and you find someone unfortunate enough to be able to help your baby. I can't imagine what you must be going through. Hugs and strength.

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  5. Praying like crazy for your baby girl as well as your family. I can't imagine what you are goin through.

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  6. I don't know you, but one of my dear friends Lissa Beckstead is due to have a baby with HLHS and her and her sister reposted your plea. I wanted to let you know I will be praying for little Scarlet and for you and your family as you go through this daily fight. i pray the Lord spares your baby girl.

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  7. My prayers are with you all. I know it can't be easy. God bless.

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  8. I am so sorry....trust me I understand your pain...my son is now 12 and was born with hlhs...my prayers and thoughts are with you all...we live in vegas and also do to childrens heart center...dr evans...God bless

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  9. I'll pray for your baby girl. Hoping for the best.

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  10. I've re posted this on about 10 different mommy pages, 5 local news casts and my own profile. Don't lose hope!

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  11. I'm praying too! I will post this too.

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  12. god bless you and your family.. my son was born with a heart defect too.. I am going to repost this web page on my facebook and also her facebook page... thoughts and prayers are with you guys.. your story is very heartfelt. GOD BLESS

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  13. I'm all too familiar with your pain and worry as my daughter passed at 10 days old from a serious heart defect and many other birth complications (and her surviving twin lives with a much less serious heart defect herself). Your story and strength have touched me deeply- you have my prayers, wishes and hopes. I'm also praying for the families that have to make the decision to donate their own little own's heart to save yours- that they will be open to the idea and understand how precious a gift it will be.

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  14. I will pray for Your precious daughter and your family. I hope miracles are on their way! We have seen miracle happening with our daughter Vilja, living with HLHS for 11 months and nearly went to heaven two times. Our thoughts are with You! Best wishes, Noora <3 -mom from Finland

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  15. I have a friend who has a show and also has been on Dr. Phil's show, she is contacting his producers to see if she can get them to put baby' Scarlet's story on there.

    I have given her your #'s and in boxed you her # she said you can call her and she will update you.

    Lizz

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  16. I also posted this on a facebook event to raise awareness for Scarlet's condition, but I wanted to post it again. I hope I can give you some additional hope for your daughter. "I am so very sorry for your situation and my prayers are with you. All I can say is that you are in great hands at LLU. I was born with a VSD (ventricular septal defect) & hydrocephalus and at age 3 went into congestive heart failure and wasn't given much time. The staff at loma linda, particular Dr. Bailey (I don't know if you know who he is) are angels who saved my life (and countless others). I underwent open heart surgery and now, more than 15 years later, I am still here & in college for a career in neonatology. I hope and pray you and your family are lucky enough to have a success story like mine. Again my prayers are with you and keep up the hope. I would love to know of any way I could help."

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