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Thread: what would you say?

  1. #1
    Join Date
    Dec 2008
    Tallahassee, FL

    Default what would you say?

    Hi, first of all, reading and posting on the forum is the only thing keeping my spirits up while EPing and tube feeding my LO! So thanks

    My DD has a cleft palate so she can't suck. My question is, when we get cleared to oral feed -- in a couple weeks I hope -- so around 4 months old, I want to skip trying to bottle feed (which is generally the only suggestion) and try to use the SNS (Supplemental Nurser by Medela).

    But so far, everything with the ped, doctors, and therapists have centered around trying the Haberman feeder bottle. I want to give BF the best chance I can, but how can I persuade the therapists to go for it without allowing myself to be bullied?? My opinions tend to get brushed aside, and I am working on being more vocal, but I just don't know how to say that I don't want to bottle feed -- or at least only do it as a last resort.

    *****DD gains well through her G Tube -- but the therapists act as though BF will be too much extra work for the baby. Is BF that much more work than bottle feeding? What do I say!?!?!?!?!?!
    pumping sucks
    But I'm EPing for my baby girl!
    Josie Grace -- 9/9/2008
    Heart Baby
    with Interrupted Aortic Arch (repaired at 2 weeks old), large cleft palate and G-tube with no oral feeding -- yet! But soon!

    ***Josie had her heart cath 2/12 and had perfect results! She is doing very well

  2. #2
    Join Date
    Oct 2008
    Lewisburg, TN

    Default Re: what would you say?

    I think we are all at the mercy of doctors who are often thinking very cautiously. Fortunately we have great IBCLCs who have the ability to research the issue and give great advice. Do you have access to a IBCLC? I think your situation calls for a consult with a IBCLC. Getting your baby to the breast is best in my humble opinion. And as soon as possible would be my opinion as well. But, then, like most, I have no experience or research information in this specific situation. I do know though that a Haberman nipple is as good as it gets to mimicing the breast as it takes the tongue to open the valve. An IBCLC can give you other options that may work well to meet in the middle in your situation.
    You sound like a very committed mom and I am so glad you have found the LLL mother to mother forums. Keep up your wonderful attitude!
    Melissa, mommy of two breastfed girls

  3. #3
    Join Date
    Feb 2008

    Default Re: what would you say?

    You are doing a great job giving your baby your milk.

    Have you been in contact with your local LLL leader?
    You can find a leader here http://www.lllflorida.com/groups/index.html

    There are some articles here on cleft palate

    Proud mom of 2 boys, both weaned gradually and with love.

    Find a local LLL leader

    For each and every one of us, the person from whom we can learn the most is our own baby: listen to him. - Mary White, LLL co-founder

    The best-kept secret in child psychology is that children who were never spanked are among the best behaved."
    Murray Straus, Ph.D.

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