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Wednesday, November 25, 2009

The Beginning...

We found out we were expecting our blessed baby the day after Christmas, 2008. What a Christmas present! We were beside ourselves with joy, but nervous at the same time due to a previous loss. Thankfully, God saw fit to bless us with our happy, healthy little boy, Carson Allen Rice, on August 16, 2009. We had to make several trips back to the hospital that first week to keep a check on his bilirubin count for fear of jaundice. Daddy took him for a few walks out in the sunshine, and soon he was out of the woods...OR SO WE THOUGHT.

When Carson was a week old, I received "the phone call". The pediatrician himself called to tell me that Carson needed to have some more tests run because one of his newborn screenings came back abnormal. He informed me that although the test could be done in his office, the results would come back quicker if we went to Children's Hospital in Birmingham. He made it sound very urgent, that it needed to be done as soon as possible. By this time, I was a little freaked out. I asked him which test it was. His response indicated the PKU screening. He added that it was very rare and probably just a "glitch", but we really needed to do further testing to find out for sure. So, we loaded up and drove to Birmingham the next day for our first "adventure".

Now, I knew at least a little bit about PKU from reading on the internet and in my "What to Expect..." book, but everything I had read seemed to escape my brain as soon as I heard the words come out of the doctor's mouth. I grabbed my book immediately and began trying to figure out what we were dealing with here. Surely it was just a glitch, because no one in either of our families had ever had PKU, or even knew what it was! The doctor's office included some materials on PKU with our lab paperwork to take to Children's, so much time was spent studying and dropping jaws in disbelief. During the waiting period for Carson's results, we just kept praying and convincing ourselves that this was definitely a "glitch".

When the results came in, Carson was indeed positive for PKU; his phenylalanine blood level was 29. We were completely stunned...I even felt numb. How could this be? Our little baby was finally here, and he was perfect! Daddy's initial response was to question God. Why did this have to happen to our little boy?! I was quickly able, through intense Mommy super-strength, to move past that point and begin figuring out "What can I do about it?" instead. I realized that God had sent us a very special baby because He knew that we were capable of taking care of him. I truly believe that in my heart and remind myself of that quite often. Carson is our special boy. There is nothing wrong with him. He is a perfectly normal, healthy, happy baby who just happens to be on a strict Vegan diet!

We were then sent to UAB to the clinic for genetic disorders. There we met a wonderful doctor and staff who explained to us everything we needed to know about Carson's PKU. They gave us a special formula to start feeding him to keep his levels down in the normal range. They also gave us some tissues and allowed us to cry. It was all so overwhelming that I could barely remember anything they said. After having much time to process all the information, I realized how blessed we are to have the great medical care and technology available now. Thanks to those tests, Carson can live a normal, healthy life. GOD IS GOOD!

2 comments:

  1. I came across your blog thru PKU families. I Isn't it amazing, we all go thru the same motions. I have twins, my boy has MPKU. Hope we can share our experiences.
    Dawn
    www.2cutetwins.blogspot.com

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  2. While I was reading your story I couldn't believe it, it was like reading about our experience. I am thankful that we have found someone that lives so close to us to talk with. You have already been a blessing to me. Your little Carson is so precious!

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