Thursday, February 5, 2009


Feeding and IV's have been a problem the past couple of days. Both of the girls are currently on TPN (nutrition through the blood) with the hopes of transitioning to breast milk as soon as possible. An NG tube (a tube going through the nose and into the stomach) was placed on Tuesday and both girls were started on 3 mls of breast milk every three hours. Before each feed they attach a syringe to the NG tube and suck out what is left in their stomach, to make sure they are tolerating it. If what they pull out is the color of milk and less than 40% of the feed then they are likely tolerating the feed and can be given more. Ava has been tolerating the milk more than Ella. Ella's feeding has been stopped several times and continues to only get 3 mls every three hours, with the majority of her nutrition coming from TPN. Because of this she was given a more permanent IV called a PICC line. Ava on the other hand is up to 9mls of milk every three hours, with the hopes of d/cing the TPN soon. We have a wonderful dietitian named Suzanne monitoring them closely, so mommy is trying to be a mom and not the dietitian.



  1. LOL - good for you! You be the mommy & let Suzanne be the dietician! :) And, by the way, you are already an awesome mom!! :)

  2. Rachel,

    I found your blog and wondered if you had heard of the Oley Foundation yet.

    We offer free information and peer support for families like yours with a member on home tube or IV feeding. Check out our website at

    In particular you might be interested in the

    • Meet Patients Section (try all three links)

    • Tube Feeding Tips page

    • Complication charts for tube feeding (HEN) and IV feeding (HPN)

    • Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at
    There are travel scholarships for first time attendees.

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY