It is hard to believe that my baby is already 6 weeks old!! It has flown by. I have debated about writing this post but in the end decided that it would be okay. About 3 weeks ago I received a phone call from our pediatrician telling us that one of the tests on the newborn screening came back abnormal. He threw out some big words explaining to me what it was and told me that we needed to go to the lab and have her blood drawn as soon as possible for more definitive testing. He went on to tell me that in the meantime I needed to watch her for any floppiness or extreme sleepiness. I thought to myself, hello I have a newborn, she fits both of those explanations!!! Regardless, Joe and I took her in to have blood drawn. I wrote down the name of the labs they were testing and went home and did some research. I was anxious all weekend due to my findings and by the time the Dr called on Monday with the results, I had pretty much prepared myself for what he was going to say. Monday came along and the phone call I expected came. The labs again had come back abnormal and the Dr wanted to see us that afternoon to talk about it. Alexis has a condition called Congenital Adrenal Hyperplasia. Basically her adrenal glands don't produce any Aldosterone (the hormone that regulates salt balance) or Cortisol (the "stress" hormone, also responsible for blood pressure regulation, glucose metabolism and alot of other things). Treatment for this is basically steroids three times a day for life to replace what is missing. With this treatment she should grow and develop normally. Blood draws once a month for the first year or so put a damper on things but when the doctor tells you that without treatment she would eventually crash and die it puts everything into perspective. The scary thing is that only about 19 states test for this condition on the newborn screening tests and from my research I read that most babies that are untreated crash within the first 6 weeks of life. I am extremely grateful for such a wonderful pediatrician who spent over an hour with me answering questions last week and for family who have been so concerned and supportive.
On a happier note, She is doing awesome. She is growing like a weed and last week at the Dr's she tipped the scale at 10 lbs. I am afraid she is going to outgrow all the clothes I saved from Haiden. She has these cute little leg rolls and knee dimples. Oh well I guess I will have to do some shopping. We are blessing her on Sunday but I snapped some pictures of her the other day while I was playing around with the camera.
Winter Wonderland At Stillestead
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