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Thread: High Palate, tight upper frenulum, non-nutritive suck and low supply

  1. #1
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    Nov 2007
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    Default High Palate, tight upper frenulum, non-nutritive suck and low supply

    When he was 3 days old I was told he had a non nutritive suck and that I need to supplement. I decided to keep him at the breast more to help my supply. my milk didn't come in until about the 5th day (with my first it came in 2nd day). but when it came in I was only mildly engorged. I also never leak except a couple of times when i wasn't wearing a bra while he nursed on the other side. DS would nurse (and still does) around the clock. He was jaundiced for the first 10 weeks of life since he wasn't getting enough calories. He was also gaining weight slowly and was failure to thrive.

    It took 3 LC, plus 2 LC over the phone, to tell me that he had a bubble palate and short upper frenulum. now he is almost 3 months and still has a non nutritive suck but he does get milk from me it just takes awhile. he sucks more than swallows. I supplement with the little bit I am able to pump and use a syringe/tube to feed him.

    All the Drs he has seen have told us that hes upper frenulum is fine even though it is to his gum line. they won't refer us to anyone so we are switching him over to a PPO and will take him to an ENT in hopes of getting it clipped to see if that will help his latch. I have been told his latch is fine, even though he curls his upper lip in always.

    I am now worried about the prolactin levels being set. I am using a lactina pump and get about 2 ozs total a day from about 4 to 5 pumping sessions. I take Domperidone. I do breast compressions but it doesn't work very well to get more or or to get him to swallow.


    i really don't want to give up I know I can BF since I nursed my oldest till he was 6 years. but all the road blocks I am hitting with the LO is making it hard to keep it up. I get about 4-5 hours of per 24 hours an it'd taking it's toll on me.

  2. #2
    Join Date
    Dec 2006
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    833

    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Wow you have just been through the ringer!!

    I decided to keep him at the breast more to help my supply. my milk didn't come in until about the 5th day (with my first it came in 2nd day). but when it came in I was only mildly engorged. I also never leak except a couple of times when i wasn't wearing a bra while he nursed on the other side. DS would nurse (and still does) around the clock. He was jaundiced for the first 10 weeks of life since he wasn't getting enough calories. He was also gaining weight slowly and was failure to thrive.

    It took 3 LC, plus 2 LC over the phone, to tell me that he had a bubble palate and short upper frenulum. now he is almost 3 months and still has a non nutritive suck but he does get milk from me it just takes awhile. he sucks more than swallows. I supplement with the little bit I am able to pump and use a syringe/tube to feed him.
    You put in so much hard work these past months and obviously really reached out for help, so that is awesome. Are you using the syringe/tube like an SNS, in other words at the breast so he nurses at the same time, or were they having you do it in another way?

    All the Drs he has seen have told us that hes upper frenulum is fine even though it is to his gum line. they won't refer us to anyone so we are switching him over to a PPO and will take him to an ENT in hopes of getting it clipped to see if that will help his latch. I have been told his latch is fine, even though he curls his upper lip in always.
    I really don't know why so many doctors are so hesitant to do a clipping. It's not like the hesitate to do circumcisions, and clipping a frenulum is WAY more minor, and often very beneficial, IMO.

    I am now worried about the prolactin levels being set. I am using a lactina pump and get about 2 ozs total a day from about 4 to 5 pumping sessions. I take Domperidone. I do breast compressions but it doesn't work very well to get more or or to get him to swallow.
    Have you tried massaging your breasts before the feeding too? Any other galactogogues? Maybe there's some information somewhere in these links that might be useful to you if you haven't seen them already.

    Links: Breastfeeding a Baby with Tongue-Tie
    Nipple Pain (scroll all the way down to "High Palate" for suggestions on improving latches in babies with high palates)
    Links: Got Milk?
    Establishing and maintaining milk supply when baby is not nursing
    I'm not pumping enough milk, what can I do?

    i really don't want to give up I know I can BF since I nursed my oldest till he was 6 years. but all the road blocks I am hitting with the LO is making it hard to keep it up. I get about 4-5 hours of per 24 hours an it'd taking it's toll on me.
    I'm sure it definitely is taking its toll, hang in there, you sound like a really determined mama, congratulations on making it to 6 years with your oldest so keep up the good work!
    Erin (32), breastfeeding CLW, knitting cloth-diapering crocheting, heirloom tomato-growing philosophizing poker-playing feminist artist mama to my 19 month old daughter! Baby #2 due January 2009.


  3. #3
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Hi!
    Can you tell us your birth details, any complications? Baby's initial birth weight? Lowest weight.
    Approximate weight gain now. Amount of wet and dirty diapers per 24 hour period.
    And finally tell us why you think you aren't producing enough milk, outside of supplementing.

  4. #4
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    Nov 2007
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    I was induced due to high blood pressure at 37 weeks. the induction took 3 days I was on penicillin and pitocin the whole time along with dextrose IV a few times. delivery happened 8 hours after they broke my water. LO was out quickly but had the cord around his neck twice and had some trouble responding once he was out and needed oxygen and he had wet lungs. He also couldn't feed right away due to his oxygenation levels went down when he nursed and he was breathing too quickly. He also had a reaction to the penicillin by way of a rash.

    He nursed eventually in the hospital but he would always do sucks but not swallow. I was pumping during the first few days and was told it would get better in a couple days and wasn't told to keep pumping (wish I had).

    on day 8 he was still jaundiced and I thought he might have a little reflux. He was admitted to the PICU they did the light, ph probe and he had a chest infection (due to the wet lungs). the light brought the jaundice down a little and the ph probe came back ok just a little reflux not enough to need meds granted they did the probe with him at an angle so I am not sure how the test might have been if he was laying down since he screams when you lay him down flat. the jaundice eventually went back up and didn't fully go to normal until last week. we did the formula for 24 hours at week 7 didn't make much of a difference. by this point my milk supply was already getting low I wasn't engorged until the last part of the 24 hours I pumped and didn;t get much.

    I took his this week to see and ENT which was of no help since he didn't treat kids his age even though I told them he was 3 months when I made the apointment. He wouldn't consider clipping his upper lip. he says the only reason to clip it was to kiss better. on top of that he charged us more than the new patient price. I am going to call another ENT I found that is just for peds.

    tomorrow he is going to the DR about getting him on reflux meds. and to get a referral since his head tilts like he has torticollis I hope to also get his mouth checked for oral motor issues.

  5. #5
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    Nov 2007
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Quote Originally Posted by carpentergirl View Post
    Hi!
    Can you tell us your birth details, any complications? Baby's initial birth weight? Lowest weight.
    Approximate weight gain now. Amount of wet and dirty diapers per 24 hour period.
    And finally tell us why you think you aren't producing enough milk, outside of supplementing.
    he was 7lb went down to 6.8 lb
    2wk back to 7lb
    10wks 9.2lb Started supplementing
    12wks 10lbs

    before supplementing he peed often (7-10 times) but not in volume over night he would pee about 5 oz his soft spot was slightly sunken in and he doesn't swallow when he sucks. they also did lots of bloodwork on him the levels in the metabolic panel were off.

    Why i'm not making enough milk....
    With my first I was always full feeling leaked like crazy until past 6 months. this time I don't get a full feeling I don't leak breast are always soft even at the hospital and when my milk came in I was only slightly full. I know I can make the milk but LO's problems have caused supply issues even with nursing around the clock since he isn't transferring milk I'm not making enough of it for him. and pumping isn't going well

  6. #6
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Bump.
    I'll respond later I'm running out of the house.

  7. #7
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    Nov 2007
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Can you tell me what you mean by "pumping isn't going well?" Pumping has been hellish for me.. but I've picked up a few tricks here and there that may help you.

  8. #8
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    Nov 2007
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Quote Originally Posted by rosesforlily View Post
    Can you tell me what you mean by "pumping isn't going well?" Pumping has been hellish for me.. but I've picked up a few tricks here and there that may help you.
    I just cant seem to produce well for the pump. I've tried compressions, hot compresses before and during, double pumping, pumping while nursing, using the pump in style, ameda, lactina, and now the symphony, Relaxing envisioning my milk flowing, trying not to get over excited when I see milk flowing since it normally stops when I do. covering so I can see the pump parts, and using narrow bottles to encourage me that I am getting more.


    if you have something I haven't tried I am all ears or boobs lol

  9. #9
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    Nov 2006
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Try using cues when pumping, get baby to wear a shirt for a few days so it really smells "right", use a picture, and lastly record some of your babies hunger cries. If you think about it what greater cue is there for a let down other than actual nursing? You hear your baby, your milk lets down.

    Ok so have you called your local leader yet? Now is a good time! It's free, its supportive, and you may get some resolution.

  10. #10
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    Nov 2007
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    Default Re: High Palate, tight upper frenulum, non-nutritive suck and low supply

    Have you tried changing flange sizes? For me, the standard (24) was pinching the milk ducts closed so I couldn't get any milk. Went up to the 30, which was a much more effective tool. Also -- I can't let down when cold, or tired, so I make sure I'm wrapped up in a blanket, and my best pumping is first thing in the morning.

    Other things that helped me were drinking lots of water before /during pumping, and eating chocolate during pumping (making it a pleasant experience instead of thinking about how much I hated it and how frustrated I was that the baby didn't eat right). FWIW the chocolate also helped to start my labor.

    There's more but I can't remember right now... bbl if I think of it.

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