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Thread: Tube fed baby trying to breastfeed need help

  1. #1

    Default Tube fed baby trying to breastfeed need help

    Hi there, I'm new to this! My son Will has Down syndrome, he was born @34wks +2. He's being tube fed (ng tube) EBM and before has a go on the breast. He's managing to suck a bit but gets v little milk and he doesn't get much other than my nipple in his mouth (he doesn't open his mouth v wide). He doesn't have a good latch either. Some days are better than others but even after an hour on the breast with what looks like a decent mouthful of breast he still managed to tolerate a full top up of milk by tube which I would of thought he'd be sick if he'd got some breastmilk?. (Think he catches the drips when I'm on let down!!)
    He's 10wks old (4wks corrected) and 5lbs 7oz. Slowly gaining weight.
    I hate the nasal gastric tube although appreciate a necessary thing for now.
    Am at the end of my tether don't know whether to give up and try bottle feeding him or to persevere with breastfeeding?
    Don't want the tube to have any long term damaging effects? Am I being ridiculous?
    Please please any advice from mums with experience of this would be amazing.
    I've not tried nipple shields, should I? Not tried him with a bottle either.
    I'm keen to try a bottle so he no longer needs the tube but would also like to keep breastfeeding and I'm worried using a bottle will confuse him. ???
    Any advice greatly appreciated thank you xxx

  2. #2
    Join Date
    Nov 2012

    Default Re: Tube fed baby trying to breastfeed need help

    Congratulations on your new little son! You are doing a great job getting him off to the right start!

    While my son was not premature, he was small, and we had nursing problems in the beginning and we found our successful breastfeeding relationship by first using SNS and then transitioning from that to a nipple shield, and the directly to the breast.

    Give SNS (supplemental nursing system) a try before you try a nipple shield or a bottle. It's a small tube that will go into his mouth and you can control the milk with a little syringe or bag that hangs around your neck. It's work, but it might do better at getting him comfortable with sucking and swallowing while on the breast, but it's less work for him and possibly more fulfilling. Any Lactation Consultant should be able to provide you with a kit to get you started.

    I think you are right to worry that the bottle could confuse him. It doesn't confuse all babies, but I would not go that route since breastfeeding is not yet established.

  3. #3
    Join Date
    May 2006

    Default Re: Tube fed baby trying to breastfeed need help

    I don't have personal experience with your situation, but I think persevering might well pay off. I remember reading that kids with Downs' blossom in slow-motion- so a skill that takes a typically-developing baby a few days or a week to master might take several weeks for a baby with DS. A lot of typically-developing kids are still having trouble with nursing at 4 weeks, which is why moms are advised to delay into riding a bottle until at least 4-6 weeks, or longer if nursing is still difficult. So I think it makes sense to think of your baby as a brand-new newborn, in terms of his ability to nurse. Give him another few weeks to try to master this tough skill before you think about throwing in the towel!

    I perosnally would not try a nipple shield. Shields are best reserved for moms whose babies will not latch on otherwise, and it sounds like your baby latches on just fine, and his major issue is milk transfer. Shields can actually interfere with milk transfer because they interpose a barrier between the breast and the action of the baby's mouth/tongue.

    Have you seen a lactation consultant, preferably an IBCLC? One thing that can help you evaluate a baby's nursing skill is a weigh-feed-weigh measurement, which requires a professional baby scale calibrated to the 1/10th of an oz, and is often part of a visit with an IBCLC. If the measurement indicates good intake, then maybe you're already well on your way to ditching the tube and simply nursing. If it doesn't, then you take the scale home with you and do weigh-feed-weighs after every nursing session for a couple of days, to get a better sense of baby's average intake at the breast.

    Are you pumping? If so, how is that going?

  4. #4
    Join Date
    Jun 2009

    Default Re: Tube fed baby trying to breastfeed need help

    There are many reasons to persevere with breastfeeding. Many babies with Downs syndrome and/or prematurity issues eventually nurse just fine, and of course many babies even without such challenges have difficulties nursing early on and take time-several weeks or more in some cases- to nurse effectively. You can always choose to stop nursing, but once you do, it can be very difficult to get going again if you change your mind later (as many mothers do). You will know in your heart when/if it is ever time for you, personally, to go a different route.

    I agree with mommal about seeing an IBCLC, whose training should have included working with mother and baby on poor suck/milk transfer issues. Sometimes suck training includes using bottles as a training method, and may include using a shield as well, that I don't know. This is really a situation where getting hands on help from a trained and experienced professional is important. I also would not suggest trying to measure how much baby is getting via the breast by how much more milk baby can tolerate before vomiting. It's just not an accurate way to measure that. An assessment of suck and a few (more than one!) before and after nursing weight checks done by an IBCLC should give you are more accurate picture. If you have already seen an IBCLC please tell us about that experience.

    Here is a good article I recently found that discusses the different at the breast supplementing techniques and what situations each is appropriate for: http://cwgenna.com/smartnothard.html C. Watson-Genna wrote THE book on supporting sucking skills in breastfed infants.

    here is a list of resources, print and web http://kellymom.com/health/baby-health/down-syndrome/

  5. #5
    Join Date
    Aug 2009
    Central VA

    Default Re: Tube fed baby trying to breastfeed need help

    I'd see an IBCLC and also ask if the IBCLC can recommend a breastfeeding-friendly SLP, if you don't already have one.

    Are you in the US and if so, have you contacted Early Intervention yet?
    Mum to DS (04/07)
    EPing for former 28 weeker (03/12)

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