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.