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The last couple of weeks have been very trying for Eric & I. Last week, Hailey was born and spent her whole 1st week in the Edward Hospital NICU. Kudos to the nurses that took care of her there. They were incredible. We always felt that she was in good hands. Though, it didn’t make it any easier for us to go home without her after each visit.

We brought Hailey home on Sunday, October 30th, the day before my birthday. It was nice waking up to her that morning. Although, I’m not sure if either of us actually woke up, it’s more like we just sleepily stared at her because neither of us slept much that night or for the last five nights for that matter.

On Tuesday, she had her 1st doctor appt. At this appointment, we were told that one of Hailey’s test results had come back abnormal. It was the test result for CAH (Congenital Adrenal Hyperplasia). Her doctor attempted to explain this disorder to me and I left the office feeling confused and unsure of the severity of this disorder. I was told to bring her to the hospital to have her labs redrawn and was also given some handouts on CAH. I was also told to make an appt. with an Endocrinologist. When I made the appointment, they couldn’t get us in until May.

CAH is only tested for in 7 states, Illinois happens to be one of them. There are three forms of the disorder. The 1st being the most critical is where babies who are born with CAH will most likely die within weeks of their birth. It is more noticeable immediately in infant girls. Infant boys who are born with this form of CAH aren’t likely to be caught because there are no physical defects. The 2nd & 3rd forms are less life-threatening and can be treated through medication throughout the baby’s life, provided it is diagnosed right away. Had Hailey’s new test results come back abnormal again, she would have probably been diagnosed with the 2nd or 3rd form of the disorder, since we were already able to rule out the most severe form. The disorder is pretty rare, 1 in 15,000 births.

We are a bit disappointed with her pediatrician acting somewhat like this wasn’t a big deal and providing broken information to us. After we did our own research, we were left feeling very concerned and anxious. There wasn’t a rush put on the lab results from Tuesday so we only found out this morning that Hailey’s re-test came back perfectly fine. Some of the reasons the results from her first CAH test came back abnormal could be because of her prematurity, stress from the birth, or the steroid shots that I was given to mature her lungs when I went into pre-term labor.

I felt the need to blog about this because it seems to me that parents need to push their pediatricians more when they believe something could be wrong with their child or when told there might be something wrong.

All I know is that I’m ecstatic that my baby is ok.

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