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.

Tuesday, June 21, 2011

Presence of an Angel

             June 15, 2011 at 9:17 am Scarlet Marie Griffith graced us with her presence, 4 lbs 15.5 ounces (which they rounded to 5) and 17 beautiful inches.  She came via c-section due to stress during the labor, the cord was wrapped around her neck and stomach. Our monkey, who was said to come out ashen grey blue came out pretty and pink. With one little cry my heart was sold. As many know with a babies heart the ductus that is open while in the mother closes a few days after birth, due to scarlets condition they had to immediately take her to NICU and get her started on medications to keep that ductus open and our little angel alive. Normally after c-section your suppose to wait 12 hours before getting up and around, at 6 hours I was demanding my nurse to get approval for me to go see my daughter. Waiting to see her was very hard for me. Luckily my husband went with her to the NICU and took our family to go see her. Our baby girl is already 5 days old, were so proud, she's doing very well. The nitrogen level in her oxygen was too good for her little heart and was becoming toxic so they started her on a diluted nitrogen/oxygen supply to keep that number in a safe range for  her. Its alot to explain and especially running on as little sleep as I have been. Even though Scarlet is in the NICU, I find myself sitting up at night wondering what she is doing, what wed be doing if we had her at home and many many more things. 
I cant even express to everyone the amount of love we already have for our daughter. If you have children you know how unconditional it already is, but imagine they werent promised tomorrow, or even the next hour. How proud of them would you be for fighting, how much love would you allow yourself to give.. We have decided that we will give scarlet all of us. No matter how much fear we  have, no matter how much pain we have for what she has to go through, we will give her all of our hearts, even if we bleed. My daughter is my pride and joy and even though the fight and struggle has just begun I try and keep the faith and strength in knowing she will make it through. Scarlet had her first Heart Catheter on Friday the 17th, it went well, they found that her case of HLHS is much more severe then they had anticipated. They feel the best route for Scarlet is not only the hybrid procedure of the Norwood but a complete heart transplant. This is because the surgeries wont fix all of her heart, it will only buy time to wait for a heart. Her first surgery is this wednesday. We will know more when I talk with the doctors tomorrow.. We still have to get details like time, estimated recovery time, and when we will be transferred to another hospital within the region to wait for a heart transplant. 

              Baby Hearts aren't easy to come by, we will have to be patient and pray for our warriors strength to muster through.. We know the Lord is good and will do what he has planned for Scarlet. In the mean time, we are very scared and without my husband I would be lost. He saves me everyday and reassures me that our daughter is a fighter, she will make it. He works hard for our family and I am very grateful that my children will have a father as amazing as him. Scarlet  already has her daddy wrapped around her adorable little fingers. Not to mention she looks JUST like him :) my beautiful baby girl. While we wait to hear what the plan is for our angel I will humble myself and ask that you all please pray for our family. For me and vins comfort and strength while we watch our little girls chest be cut open and operated on this weds. and more for our Scarlet. That with each passing day, with all the visits from us, and the grandparents, along with friends that she finds a reason to fight. We not only want our daughter, we need her, she is an inspiration and miracle, one that should share her story when shes older. Please just prayer for our angel, the world should know her. Thank you for being so patient, as well as tuning in to hear about our baby girl. If you have any questions please let me know, ill try to update a short blog once I talk with the drs. <3

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith