WHY GOD SENDS HLHS BABIES

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 it's 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."

Saturday, July 21, 2012

Big decisions and big changes

As most of you know Kenzens last cath didn't go well. We were told that his pressures in his lungs are really high and the blood flow to his left lung is going the wrong way which is putting a lot of pressure on his heart and it makes it so he can no longer have the third surgery for his heart and if his heart fails he will need both a heart and lung transplant. They also told us that he could come home and just start getting really sick and we might have to do something drastic like cut out his left lung. The reason why is because his heart only pumps blood to his body and the blood flow does a circle and goes to his head and then it drains into his lungs through his left and right pulminary arteries to get the oxygen that it needs. The blood flow is going the wrong way in his left artery so it means he isn't getting the oxygen his body needs from that side. Also the pressures in his lungs were really high. It's like having a bottle of pop if you shake it it builds up pressure and will squirt out. That is what is happening with him if his pressures are to high the blood can't drain into his lungs like it needs to. The doctors are worried that it will eventually lead to him not getting enough o2 and dying. They don't have very good options we can try to correct it. The things we are trying here are he is on o2 all the time and a medicine called sidenafil. We has a family have decided that to give him the best chance at living a long and healthy life he needs to live somewhere closer to sea level in elevation. When you get to sea level it is like being on o2 just by being there. These kids with heart conditions do a lot better at lower elevation. We ended up renting out our home in Saratoga Springs and we are now living with my grandma in Orem. Dave is looking for work in both California and Arizona. Most likely he will get a job in AZ. We were there last week for vacation and Kenzen was able to be of his oxygen the whole time we were there. It was just confirmation that that is where we need to be. Since his cath the doctors have told us that there have been a few children that have had the third surgery with only one good lung and they have done pretty well but only at sea level. It has been hard on our other kids to leave there friends and everything familiar to them. The good thing about Arizona is we have a lot of family down there that are really supportive of us being there and it will help a lot to still have family. Also my kids will have a lot of cousins there own age down there. I'm excited about going it is a big change but I fill it will be worth it. We are hoping Dave has a job and we are down there by the end of August so our kids can start school down there.

2 comments:

  1. You will make the best decision for Kenzen and the whole family. Heaven knew he was going to a great family. Good luck with all your new adventures

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  2. Hi Kenzen,

    My name is Jenna. You are a brave courageous fighter. you are a special miracle from god, a gift from above, earthly angel,and you are a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.


    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior
    http://www.miraclechamp.webs.com

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