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Thread: what do I say?

  1. #1
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    Default what do I 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!?!?!?!?!?!
    Last edited by @llli*katholicchik; January 1st, 2009 at 10:58 PM.
    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
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    meh....wherever
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    Default Re: what do I say?

    mama...I dont know if I have any advice because your LO is going through so much that I can't even comprehend!

    I DO want to say though, that you are friggin' amazing. You are truly inspirational and I am in awe of what you are going through and what you have accomplished so far.

    I hope you get some good advice and I hope that you are able to have the BF relationship that you want with your LO! She is SO lucky to have you as a mama.
    I'm Hillary
    Wife to Gualberto
    Mom to Nolan
    Born at 32 weeks-3lbs/10oz
    11-25-2007
    Our precious early angel

  3. #3
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    Default Re: what do I say?

    I don't have any advice either Mama, but that you are incredible!

    Maybe you could just ask for a few minutes with the LC/specialist to discuss your wishes and find out why they say BF will be too much work. From what I know, it is more work for a baby to bf than to bottle feed, since milk drips out of the bottle no matter what you do, but I don't know if a SNS might be similar. . Certainly I would think the extra skin-to-skin bf would help her out, but this is totally beyond my experience.

    Try to have a talk with your DD's healthcare team about the feeding. At least establish their reasoning and figure out what you want to do. You are still the Mama. Maybe a mix of time between bottle and SNS?

    I hope you get some answers and come to an agreement on what's best for your baby.

    And again, my hat is off to you Mama! You are awesome!!
    Jess

    Mama to my little Roxie Roo, 06/11/08


    April miles for TBTTW: 63

  4. #4
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    Default Re: what do I say?

    Are you in touch with a good helpful LC and/or a LLL Leader?

    They seem to be thinking only about the work and not about the benefit for both of you. You do use more muscles to nurse than you to do bottle feed. But...

    This is like telling a person who's paralyzed that it's not worth the therapy to learn to walk again.
    Help them understand what this means to you and your baby.

    In the case of being bullied establish the alpha order again.
    Ask, who's baby is this?
    Let them know the final decision rests with you and that your babies best interests are highest to you. I will take your best medical advice into deep consideration, I would appreciate that you have the same respect for my decisions.
    Tell them you feel brushed aside and that it's not helpful to anyone and will only create distrust and resentfulness. I don't like when you brush off breastfeeding like it's a bother or it will do more harm than good. I don't feel that way, lets talk about why.

    GL!!

  5. #5
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    Smile Re: what do I say?

    thanks! I have emailed a LC in my area and talked to a leader too. I can't wait to at least try feeding.
    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

  6. #6
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    Default Re: what do I say?

    I would sit down with the Pediatrician and point blank say:
    "I want to breast feed the baby - this is VERY important to me - How can we make this happen?"

    That way it's not a yes or no question, it's not a negative lead in. It sets them up knowing that this is important to you and that you want to make it work. If they brush it aside, go right back to it until they fully answer your question. You can do it!!
    Mommy to our DD1 early bird (34 weeks, 2 days, 7lbs, 14oz)! Oct. 2nd, 2008 Emergency C-Section, Frank Breech, HEALTHY Girl!
    Weaned @ 17 months
    Our DD2 early bird (37 weeks, 3 days, 7lbs, 12oz) Aug. 10th, 2010 Our Successful VBAC, growing like a bad weed!
    Weaned @ 15 months
    Our DD3 early bird (37 weeks, 3 days, 7lbs, 6oz) Feb. 16th, 2012 Our 2nd VBAC and lightening speedy birth!

    Loving being a Mom of 3, 40 months apart!!
    and

  7. #7
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    Default Re: what do I say?

    Studies have shown that breastfeeding is actually less stressful to a baby than bottlefeeding!! Even if she has trouble suckling effectively and you need the SNS, suckling at the breast has been shown to decrease baby's heart rate and blood pressure. Surely, this is in her best interest, medically speaking!

    Even if your doctor thinks the bottle is the best way, Dr Newman is on your side. See #10 on his page on breastfeeding myths.

    Babies with cleft lip and/or palate cannot breastfeed. Not true! Some do very well. Babies with a cleft lip only usually manage fine. But many babies with cleft palate do indeed find it very difficult to latch on. There is no doubt, however, that if breastfeeding is not even tried, for sure the baby won’t breastfeed. The baby's ability to breastfeed does not always seem to depend on the severity of the cleft.

    http://www.drjacknewman.com/help/Bre...ng%20Myths.asp
    Canadian mom and breastmilk fan.
    We have 2 beautiful children: Luana who's 9 y/o, had breastmilk for 2 years and is smart as a whip. Lucas who came out kickin', is 4 y/o and continues to enjoy his milkies.

  8. #8
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    Exclamation Re: what do I say?

    Quote Originally Posted by @llli*monika.h View Post
    Babies with cleft lip and/or palate cannot breastfeed. Not true! Some do very well. Babies with a cleft lip only usually manage fine. But many babies with cleft palate do indeed find it very difficult to latch on. There is no doubt, however, that if breastfeeding is not even tried, for sure the baby won’t breastfeed. The baby's ability to breastfeed does not always seem to depend on the severity of the cleft.


    I have never heard of Dr Newman before. I can tell him however that no baby missing the roof of her mouth can beastfeed without supplementation of some sort, let alone do it "very well". Cleft lip babies generally have little to no problems. However -- a baby drinking with a cleft palate is like someone drinking through a straw with a hole in the side. Therefore, the ability of the baby to generate a suck is totally dependent on the cleft size (cleft lip is a different story) and in almost ALL cases breastfeeding cleft palate babies without supplementation of some sort is impossible. Even LLLI agrees. I hate when people generalize and clump cleft lip and cleft palate together. It is just a general lack of info on cleft palates -- but hey, I had no idea what a cleft palate was before I had my baby; so I understand. Still, it is frustrating for even nurses in the hospital to tell me, oh well maybe she can generate a suck anyway. Nope. Not possible -- her cleft is huge. Maybe if it was a pinhole a tiny amount of suck could be generated, but I know even that is unlikely -- its the straw thing. Go try it.

    And if that wasn't problem enough, her lower jaw is displaced so her tongue bunches up and crowds her airway -- which makes breathing difficult anyway. My baby cannot stick out her tongue past her gums, but she typically chokes on her tongue 1-2 times a day. Pierre Robin is a BF nightmare -- and she will most definitely not be able to BF without help until the cleft is completely repaired.

    thanks though anyway
    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

  9. #9
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    Default Re: what do I say?

    Dr Newman is one of North America's top breastfeeding experts. Sorry I was just trying to give some support. Sounds like you have it figured out.
    Canadian mom and breastmilk fan.
    We have 2 beautiful children: Luana who's 9 y/o, had breastmilk for 2 years and is smart as a whip. Lucas who came out kickin', is 4 y/o and continues to enjoy his milkies.

  10. #10
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    Default Re: what do I say?

    Quote Originally Posted by @llli*monika.h View Post
    Sounds like you have it figured out.
    lol have what figured out!? I am clueless! Thats why I asked for help. I totally need support.

    thanks, just put yourself in my shoes. It is frustrating to be told you can do something you know can't be done (seriously, my DD has zero suck) and this is something you always REALLY wanted to do but can't and you're heartbroken. It bites majorly.

    But I do appreciate your thoughts on how to stand up for myself. thats what I need to know.
    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

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