Saturday, July 10, 2010


Hey Everyone,

While we were in the NICU, two of Emory's nurses (Lori and Vonnie) gave us a movie titled "Something the Lord Made".  It's about babies that had "blue TET" and the pioneer surgery that two men created in order to save the lives of children with the condition of Tetralogy of Fallot.  It is produced by HBO Films and was a great movie that actually helped me as a mom understand things a little better regarding Emory's heart.  Although Emory is a "pink TET", he will have the same kind of surgery done when the cardiologists feel the time is right.  Had he been a "blue TET", he would have already had the surgery.  So, if you're interested, have some spare time, and can find it, feel free to watch it.  Have a great weekend!


1 comment:

  1. Hi Twila,
    I am the mom of a little girl with Digeorge. I know you are new to this journey and when I was a newbie I sure did want to talk to moms of children who were older than mine. So anytime you want to chat or ask questions just throw them my way. My daughter is now 5 and doing really well. She had her first open heart at age 8 days and was a mere 5 lbs. Sounds like your guy is a big boy even though he is having trouble with his feedings. One word of caution. Our kids grow slower, eat slower and process food slower. Don't over feed even though your GI and cardiologist will try to get you to. If you are worried about him forgetting how to feed keep a pacifier in his mouth as much as you can. Feeding by mouth will come but you don't want to cause a problem with his GI system by over feeding.
    You can check out Madison's site at if you would like. It is always good to find someone who has walked in the shoes you will someday walk in. You can also find support on the Yahoo VCFS site. Lots of good info and good people there.
    Take care,
    Pam and Madison