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.

Monday, February 21, 2011

"1/2 An Angels Heart"

 Waiting to be seen by the doctor on Feb 2. 2011, I planned it to be just another exciting ultrasound. I had been anticipating the 18 week mark since we discovered we were pregnant, for this would be the week of pregnancy the gender is available. Doctor came in, ITS A GIRL :).. staring at the screen in joy we saw our little girl moving around. Little did we know, due to our lack of expertise, our little monkeys heart was not looking as it was suppose to. We were told her heart only had two valves instead of the four needed... half a heart... our sweet, innocent angel only had half a heart. The dr. brought us back later that day to meet with a Dr. Rollins, the Pediatric Heart surgeon.. He explained if we  decided to proceed with the pregnancy she would be in need of three open heart surgeries before three years old in order for survival. Her condition.. Hypoplastic Left Heart Syndrome (HLHS). 
We knew we couldn't give her up with a chance of her survival no matter how high of rate, we later discovered this rate is on the better side of things. All good signs, started us researching intensely to make sure our daughter would get the best care, as well as fullest life out of this choice. In said research, we discovered many families undergoing this same heart condition with their babies. These families have been remarkable in  helping us cope with all the information being overloaded into our minds. We know of a 25 year old young women, Maribeth Gillis, 4th grade school teacher who was one of the first 16 cases in America to be diagnosed with HLHS at birth, and one of only 6 that survived. Over the years the technology and surgeries have gotten better and the numbers have gone up immensely. <3 She explains to us in numerous emails how normal and amazing her life was even with the defects. 
Along with Maribeth we met the Hamilton's, their son Tucker was diagnosed with HLHS 30 minutes before death at two days old. This family is remarkable and Tucker has survived his first two surgeries and is well on his way to the third. Reading through their blog, I found a story, it caught my eye, and melted my heart... I felt it very appropriate for our first blog to scarlet.. and her readers... Its called "1/2 an Angels heart..."
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.
He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

This story, although written in fiction, brings reassurance to my heart that Scarlet will be alright, with a strong faith, prayer in the heart, and love from a large family (blood or not). Thank you for reading, hope you all enjoyed. Feel free to email me on here or facebook with any questions. 

With all my Love,
 Momma Monkey