Saturday, May 19, 2012

Paperwork

     I only have what seems like a short time until the baby comes.  Actually it's about 7 weeks.  But when you start at 40, 7 weeks sounds awesome!  As I'm getting closer to the due date, I've realized that there's still quite a bit I need to do.  First, there's the name.  We have NO clue what we're going to call our little guy.  My in-laws ask every time we see them, and all I can say is "He'll have a name by the time we leave the hospital!"  Every name I've thrown out, my husband quickly vetoes or says we'll talk about it later.  Second, I have to pack the hospital suitcase.  Third, I have to buy a baby book.  And fourth, I've got a ton of paperwork to fill out!
     Just recently, I filled out the pre-admission forms for the hospital.  Today, I called the insurance company and pre-registered.  Now, I've got all of the PKU paperwork to fill out.  That's right PKU PAPERWORK!  Apparently, just me notifying our clan of doctors (OB doctor, Lily's genetic doctor, and the pediatrician) about my due date and Lily having PKU  wasn't enough.  I need to fill out paperwork stating that each doctor can notify the other doctors of procedures that need to be done.  I also need paperwork in all of the doctor's files.  Along with a letter from the genetic doctor, describing what procedures need to be done on our new baby.

     Apparently, besides the normal heel prick test at 24 hours, our little guy will be receiving an additional blood draw.  It needs to be taken after 24 hours of birth, has to be a specific amount of blood, in a specific type of vile.  And then needs to be over night shipped to UIC in Chicago.  Also in the letter, the doctors and hospital staff are reminded that our child has a 25 % chance of having PKU and that a PKU diet is essential.  It also states that the diet needs to be implemented as soon as possible or our child can develop brain damage, leading to mental retardation. 
     Just reading it in black and white, gives me chills.  I know how it works, but I haven't had to see or hear that information for quite awhile.  It definitely puts things back into perspective!
     All seriousness aside, who knew that having another baby would lead to 50 trees being killed, just for some PKU paperwork?!  I joke about filling it all out, but it definitely makes me think about our baby's future.  We have a 25% chance that this little guy will also have PKU.  25% doesn't sound all that high.  But when you realize that only 1 in 15,000 births in the US have PKU and our little Lily hit that number 1, 25% starts to sound much higher.
     I'm not scared.  I've done it once.  And this time, I'll know what to expect.  It won't be completely new.  I won't be lost.  I now have a whole clan of doctors and dietitians there to help me out.  We belong to an amazing support group of PKU parents and patients.  I have an incredible family, who is always there to lend an ear and give support.  OK....I'm still a little scared!

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1 comment:

  1. You took the leap of faith trusting in God when you said yes to having another child. And you know God is good and will bless you whether or not this baby has PKU (although we both know sometimes you just want to say Lord, really??). But praying all is well and this baby (maybe Patrick?) will be healthy and happy. :)

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