Sunday, May 8, 2016

Flashback- The Diagnosis

Monday, October 4, 2010

The Diagnosis

     Ryan, Lily, and I went to UIC and met with many genetic doctors, dieticians, nurses, and genetic counselors.  I though that I was going to go into shock when I saw how many people were in the room waiting for us.  We were given the facts about PKU, ok I'll admit that I was glad that Ryan prepped me (don't tell him though...I don't want him to know that he was right and I was wrong).  I learned that if Lily did have PKU that the gene had to have come from Ryan and me.  This tidbit did not allow me to blame it on the Nestler gene!  I was just as guilty, which led to a lot of emotions.  I was partially responsible for my daughter's problem.
     With this last sentence, the counselors assured me that there was nothing that I could have done to prevent this.  It's just part of genetics.  Yes, I did know this.  Yes, I was not truly responsible.  Yet, I still felt guilty.  It didn't matter what the professionals said, I was Lily's mom and it was my job to protect her.  This thinking eventually paved the road for depression.  I road that I would be on for quite awhile.
     The doctors poked and prodded Lily and left me to calm her and myself down.  To be honest, I looked very calm and did not cry... not one tear!  While the genetics counselor was taking Lily's blood, she peed all over him!  Is this karma?!  Ryan and I listened to the professionals and learned that with a low phe (phenylalanine/protein) diet that Lily would be just like any other child.
     I took a much needed sigh of relief and asked "What does a low phe diet look like"  Right then I should have just inserted my foot into my mouth.  I mean really.  If you don't know nor want the answer, should you really ask it?  When will I ever learn?...never
     I low phe diet looks like this:  NO dairy products (milk, yogurt, cheese, and yes ice cream), NO meat (beef, chicken, pork, and yes fish), NO grains (wheat, rice, flour), and NO soy.  I was left thinking..."What can she eat?  Fruits and vegetables only?"  Before I could ask, the dietician assured me that there was more to a PKU diet than just fruits and vegetables.  I couldn't picture anything else.  It was like being a vegetarian, but without the option of soy products!
     So, Ryan and I went to lunch while we waited for the results.  This seemed like the longest hour of my life.  All we could do was wait and see.  We are not very good at waiting.  (Ryan is an adult with ADHD -seriously.)  So the idea of waiting for an hour and just staring at each other almost seemed just as bad as the actual diagnosis!  Almost.
     Ryan and I went into the doctor's office and there was an extra doctor.  Red flags were waving!  The diagnosis was "Lily has classic PKU."  All of my calm behavior form earlier just flew out the window.  I immediately began crying- hysterical crying!  I mean talk about the crazy lady who's crying, then gets the hiccups, and can't even get a word out of her mouth.  That was me.
     We left with supplies to draw Lily's blood weekly, a scale to measure food, Phe free baby formula, a binder filled with the phe levels of food, and the directions to not breast feed for a week!  That last part was the straw that broke the camel's back.  The diagnosis had sunk in and I knew that I would be the mom that Lily needed...but not breast feed?  Impossible.  We were just beginning to bond.  I was all she knew.  Not to mention the physical pain that I would feel.
     I knew that we could do it simply because there were no other options.

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