When it comes to talking about my children I could write non-stop for weeks and still not run out of funny or inspiring stories to tell. What I have to write about today isn't something I ever want Levi, or any of my children to read about themselves. Levi knows he has a disability and as he gets older we will reveal more about his condition when we feel led to do so. One way we will know when he is ready is when he starts asking more questions. Levi doesn't care to know too much about his past regarding his condition or anything prior to being adopted. He rarely asks questions but when he does we sit him down to have a talk and as soon as we give him the answers he wants he is happy and ready to move on. Logan on the other hand asks questions all the time. He asks less as he gets more comfortable with us but his special need is currently much more obvious than Levi's.
I will probably remove this post well before Levi discovers I'm writing a blog about my children and putting in specific posts about his disability. I'm not trying to hide anything from my children but there are just certain topics that have to be explained in a more child friendly matter. You'll see what I'm talking about later.
I'm telling this story to the best of my knowledge. I'm using my wife as reference but anything before we adopted him at the age of 4 is what we were told from his foster home.
Levi was born on March 24th, 2005. We don't know anything about his parents except for the fact that they loved him very much. The first reason we know this is because they kept him so long. He was 6 months old when he was abandoned but he only weighted 8 pounds. This tells us that his parents didn't want to abandon him but realized he was dying and couldn't afford medical care. The second reason we know they loved him is because of where he was abandoned. Going through the adoption process we found that there are generally two ways a child is normally abandoned in China. One is to take them to the most secluded area possible so nobody will see you. Somebody would do this so they don't get caught and their love for that child is trumped by the punishment for committing the crime. If you are caught abandoning a child it is punishable with up to 5 years of prison. Parents that abandon their children in public areas really want their children to be found and will take the extra risk of getting caught. Because Levi was found on the front steps of a Police station in Henan tells us that his parents really wanted him to be found and really wanted him to get medical care.
There is also the possibility that his biological parents found out that he had a disability before he was born, in that case they could have easily aborted him because abortion is legal all the way up to birth. We like to believe that Levi's biological parents loved him a lot and only did what they had to because it was the only way to save his live.
Regardless, Levi made his way to an orphanage that really couldn't take care of him so he ended up making his way to an amazing foster home called New Hope. http://www.hopefosterhome.com/ This is where Levi met Logan (Our second adopted Son) and this is eventually where we found him.
The amazing people at New Hope were able to find the correct doctors to care for Levi. There are a lot of medical terms that I could use to explain his disability but here are the basics in layman's terms: Levi was born with half a heart... now that's pretty bad but it gets even worse because only half of that heart works. Crazy he made it 6 months. It was even worse than that because his heart had holes in it and good blood was leaking into the bad blood so not only did he have horrible circulatory system but the oxygen rich blood wasn't so rich of oxygen.
Before we even found out about Levi, New Hope was able to send him to Singapore to have two life saving surgeries performed by an amazing Dr. Shankar. We knew he was going to have to have a third and final childhood surgery that would install a device called a fontan. The plan was to get him home before this surgery was performed but because his health was declining so quickly it had to be done prior to the adoption. The surgery was extremely successful but Levi had a horrible recovery. He was very touch and go and we didn't know about a lot of this at the time. But over all he was in the hospital for the surgery for 6 months. Levi spent a majority of his first 4 years alive in a hospital. Crazy to find this out considering his happy, cheerful self today.
The Fontan: Let me help draw out for you. Picture your heart as a circle. In this imaginary circle draw a cross to split the circle into 4 even parts or pie pieces. These represent the 4 ventricles of a normal human heart. The two ventricles on the left side of your heart pull old blood, lacking of oxygen, from your body and push it to your lungs and back to the right two ventricles. The two ventricles on the right side assist with pulling the good oxygen rich blood from the lungs and push it to the body and the blood eventually makes a full circle back to the left two ventricles. Because Levi's left two ventricles were basically none existent and doing nothing but bad things to him, New Hope had the fontan procedure done that basically built a bypass to go around the two left ventricles and go straight to the lungs. And because one of Levi's right ventricles doesn't work, Levi's body is working with a single ventricle, were the normal human heart has 4.
The link below has some studies regarding the ongoing life of a Fontan Patient.
http://www.childrensheartfoundation.org/node/314
Levi is going on 5 years post surgery. He has beaten the first statistic where a large majority of Fontan patients will slowly or rapidly decline and ultimately the Fontan will fail along with the heart. I don't like to think or say what this means to the patient but everybody knows what happens to your body or life without a functional heart. Getting past the 10 year mark will be another great milestone for Levi as most of my reading points to the fact that any major issues will occur in that time. But regardless, the life expectancy of the Fontan and their patients are 30 years.
At the time that I'm writing this I'm 35 years old and consider myself a young adult. I'm still discovering my potential and have great expectations of building my family, and myself. The fact that Levi my never make it to my age is humbling.
We constantly see children with the same or similar disabilities as Levi move on to Heaven at a much younger age. Sometimes it's because of complications from a surgery or issues that were brought on because of common sickness that people with a healthy heart can shrug off with a little time.
I know that God can completely heal his heart and I truly believe he will. I think Levi will live an extremely long and healthy life because God has a lot planned for this 8 year old. That's why he is part of this family because God gave Levi parents that could truly care for him the way he needs to be taken care of.
