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, October 26, 2011

Together At Last

Today, Scarlets heart has been in exactly a month, shes doing amazing, September 26th, 2011 is scarlets second chance birthday, happy one month strong angel. What a transformation our girl has endured. From a Smile with a stapled chest, to a carseat two weeks later, and going home for the first time on October 10, 2011 just five days shy of her four month birthday. She is our Miracle. Its as simple as that. Thinking back to all that weve gone through its such a true testimony of what the power of God can do, to be here where we are today. With only eight medications, three times a day, and twice a day IV treatments at the hospital we cut our ties and took off to our temporary home. Weve been home for a month and I honestly cant describe what a complete and utter joy it is.. We've finally got to experience normal, a baby screaming at in the middle of the night because shes hungry, and us waking up in between feeds just to make sure shes ok, but I couldnt be more grateful. This is being a mom, and I am in love with it. We lay on the couch and watch movies, we laugh together and sometimes cry together, we change outfits two times a day because of spilt over diapers, take naps together, and we eat all the time! At first me and Vin were really stressed out with getting in the routine of everything, medications, hospital trips, checking heart rate and all the normal baby stuff. She had her NG tube in her nose for feeding and an IV in her arm for her treatments, and she fought her meds quite a bit as many know from my complaining and worrying on facebook. She had an issue keeping her most important med down which really stressed us out but again by the grace of God shes been able to keep it down, she still screams, and even gags but she doesnt throw it up, personally I think shes learned if she does it just has to be readministered and she'll have to go through it all again. After about three weeks her picc line finally went bad and they had to try and replace it, with six attempts and no anestetic, I had to ask them to stop, they placed a temporary IV, which I am happy to report is now gone for good! Three days ago they took it out and switch her gancyclovir (for CMV) to oral Vallcyte so our only time at the hospital is now for clinic twice a week, which is enjoyable and a breeze. We met with Dr. Razzouk, Scarlets surgeon about three weeks after her being home and he said she looks absolutely amazing and what a true miracle the heart was to fit perfectly. We are so grateful. He also said as soon as we get a little farther post transplant we can go home for the weekends, we can actually take Scarlet to her home to meet her puppy, and get a little taste of what life will be like when we return home for good in Feburary.
What a true joy she is having home. Scars a great baby, she only cries when shes hungry, which makes it easy to figure out what she wants, although its hard because we have to check her diaper every so often, she never tells us when shes dirty.. She loves interacting with people and listening to your conversations, shes very nosey. Shes full of smiles, and is just learning to laugh and make cooing sounds which just melt our hearts. This girl can eat, since shes been home shes gained over one pound, she eats about two to three ounces every couple hours, and shes started holding her own bottle.. We thank God and our donor family everyday for our blessed miracle and the opportunity we get to be together at last. A family, something we always knew we were, but weren't quite sure wed get the chance to be. Scarlet is our joy, our reason for carrying on and because of her we know we can get through anything. The road is no where close to being over, it will be a life long journey of medications, doctors appointments but most of all it will be a life with Scarlet, a beautiful miracle, a true testimony of faith, a gorgeous smile and an amazingly strong personality.
We hope you will continue on with us as our little monkey grows up, along with our family. We also hope that we can continue to help others see, just because things get tough, and sometimes seem like all hope is lost, keep your faith strong, and God will be there to hold you up and get you through. The Lords will be done, whatevers meant to be will be, and remember to love one another, for love, hope and faith is all we can have in this world that cant be taken away.  We feel so blessed to have this miracle and, I cant even explain how grateful we are to all of you for following and supporting our family through all of this. Thank you all. We love you and you are part of our miracle, never to be forgotten and always remembered. Please always remember to pray and thank God for the littlest things, hes there, and he hears them, and answers them all in his own way. We will update in a few weeks, but so far, so good. Scarlets Home at last and thriving beyond all expectations as usual.
With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith

1 comment:

  1. I am so grateful to hear you blog again. I have kept you, your family, and Scar in my prayers every single night. I know we don't know one another, but I have been hooked to your miracle from day one. My husband lost his son to Hypoplastic RIGHT Heart Syndrome at two months old. He only had the first surgery. To see such a miracle as Scar brings tears of happiness to me. I am so happy to share in your blessing and I cannot wait to watch Scar grow up in front of us all. God has truely blessed you and your family. Congrats and KEEP it up Scar! You rock girlfriend!!!!