May 29 Kenzie Elizabeth

Today was a good day. I spent a lot of time with Kenzie. When I hold her I can't help but kiss all over her. She's so stinking cute. Sundays for some reason seem more emotional for me than some of the other days. I guess probably because when you go to church and you listen to sermons about God, Jesus, and Heaven you are comforted knowing that if the worse were to happen she would be in the arms of someone who loves her as much as we do. I am a very selfish person and I want to keep her around for a long time. Don't get me wrong I am almost 100% convinced she will be ok. Did you catch that? I said almost. There is always a little doubt no matter how hard I try to make myself believe she is gonna be ok.
We have some friends who's little girl had open heart surgery and had her aorta replaced. At first it looked good, then she got a bacterial infection, that caused her lung to collapse. She has been having a rough way to go. She has a website. www.shoutoutforscout.com if you want to check it out. I am not sure how her parents are holding up, but somehow they are. I know in a few weeks we are gonna be in the same boat as they are and it makes my stomach turn upside down. There is no way to run from it, or fight it, or hide from it. It's coming and there is nothing I nor my wife can do about it. The only thing we can do is pray and hand it over to God and Jesus. So that is what I am asking for, prayers, prayers, prayers.

Kenzie Crawford May 19/2011

Kenzie was born with a congenital heart defect called tetralogy of fallot. This is where the heart has a hole between the two ventricles, the pulmonary artery is restricted, the aorta is displaced (not laying exactly right.) This defect has to be corrected by open heart surgery. She is supposed to have this surgery in early July. Right now we are going to the Dr. about every 2 weeks. This is where it is kinda hard. Everytime we go to the doctor they tell us how good she is doing, but in the end we know surgery is waiting. Most of these babies have a hard time gaining weight because they are lazy feeders. The harder she has to work, the harder her heart has to work, which makes her tired. They want her to get to at least 11 lbs, right now she is 10.7, so she is gaining weight.

When we take Kenzie to the doctor, they measure her oxygen levels. When she was born, her oxygen levels were 100%. The next time we went they were 96%. 2 weeks ago they were 90%. There are adults that are walking around whose oxygen levels aren't that good, but the fact is that what is beginning to happen is her little heart can't get the O2 to the tissues the way it is supposed to. The bigger she gets the worse it gets, because when the heart gets bigger the problems get bigger. Also, if her heart beats harder because of the restriction of the pulmonary artery, the right ventricle would get bigger and thicker. Now for biceps that is good, for the heart it is bad. When the heart gets thicker, it begins to lose elasticity and can't beat and eventually gives out, causing heart failure. So our remedy to this situation is to not let her cry. If she cries, her body would need more oxygen which her heart can't give her. If she cries too hard, she could become blue which is termed a "tet spell" . She hasn't had a bad one yet, but we do notice some greyish tint sometimes. We usually hold her all the time. Alicia even lets her sleep on her at night. This is very tiresome, but we know it is temporary. It does make it a little tougher on the old back, but that will pass, too.