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Anyone with a preemie with feeding issues related to poor oral motor tone and sensory disorganization?

My former 32 week preemie is 4 mo old chronologically. She's eating only 13-16 oz per day, shy of the minimum 20 oz. Occupational therapist and speech therapist said that she has sensory integration issues along with poor oral muscle tone (she clicks when eating, which means that she's breaking her seal while sucking). When my daughter is fully awake she fights us with eating. She's normally a happy smiley baby but when it's feeding time she complains and cries. We have resorted to trickery and feeding when she's half asleep. Anyone with any hard to feed babies out there? Help?

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Mom_to_Haley

Asked by Mom_to_Haley at 2:22 AM on Jun. 25, 2009 in Babies (0-12 months)

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Answers (6)
  • Are you nursing her? Sounds like you may be. This is a frustrating problem, I know. If you're not nursing, we found premie nipples that were so much softer and required much less "effort" on the baby's part to suck them. I'm sure someone has offered this suggestion if you're not nursing. If you are - then I just don't know. Sure wish I could help. My granddaughter was a 4lb premie but didn't have the more complicated problems of your baby. The premie nipples did the trick for her.
    God Bless and I wish you the very best. I pray that this resolves for you very soon.
    Waycross48

    Answer by Waycross48 at 3:52 AM on Jun. 25, 2009

  • One other thing - I just remembered that they recommended the use of a pacifier to help strengthen her sucking ability. I ordered some of the same ones they use in the hosp (in a larger size) from a medical supply in Hawaii. I don't recall the name of the business, but I did a search under the name of the pacifier from the hospital. They are the ones that have a little "tab" sticking out of the back of it and it has two little holes on each side of the large hole where the nipple is. Make sense. The premie ones are a peach color. They sort of look like a "clown" smiley face when they are sucking on them. These may be things that you heard about from day one - but I'd rather include them just in case. I FOUND THEM - Gumdrop medical pacifier - Hawaii Medical Group. Not too expensive. God Bless You!!
    Waycross48

    Answer by Waycross48 at 4:02 AM on Jun. 25, 2009

  • OMG...I HAVE A FORMER 28 WEEKER WHO IS 9 MO OR 6 ADJ AND IS A NIGHTMARE TO FEED. HER OT CAN'T EVEN FEED HER. SAME THING..WHEN ASLEEP OR REALLY TIRED..NOT SO MUCH OF A PROBLEM, BUT AWAKE IS A BATTLE. GI CAN'T HELP, PULMONOLOGIST CAN'T HELP. I SUSPECT 2 ISSUES, 1) ORAL AVERSION (OF A MILD TO MEDIUM CASE SINCE ASLEEP THEY DON'T FIGHT)...FROM VENT MOST LIKELY FOR MINE. 8 WEEKS. 2) NICU PUSHED SO MUCH FORMULA ON HER TO GAIN WT AND SHE JUST COULD NOT TAKE IT...SO WHEN I WENT HOME I WAS TRYING TO OVERFEED HER AND FOUGHT A LOT FOR NOTHING (SHE WON). SHE IS BEING EVALUATED ON FRIDAY BY A FEEDING SPECIALIST. I WILL LET U KNOW OUTCOME. SHE HAS BEEN HOME 4 MONTHS AND I AM EXHAUSTED...FROM THIS. NO ONE UNDERSTANDS WHAT I AM GOING THROUGH. OT SAYS BABY NEEDS BOUNDARIES, I SWADDLE (TIGHTLY) GIVE CHIN, AND CHEEK SUPPORT AND HOLD MY HAND OVER TOP OF HEAD, ALSO PUT BURP RAG OVER EYES SOMETIMES. THEY SAY THEY'LL GROW OUT OF IT....
    KATWOOD36

    Answer by KATWOOD36 at 10:27 PM on Jul. 22, 2009

  • OH THAT'S THE OTHER THING TOO. WHEN THEY NG TUBE FED HER IN NICU I'VE READ THEY ARE SUPPOSED TO STICK FINGER OR PACI IN MOUTH SO BABY ASSOCIATES THAT...THEY DID NOT DO THAT THEY JUST HUNG TUBE AND LEFT HER...SHE WAS THERE FOR FIVE MONTHS TOO...AND THEY HAD HER BOTTLE FEEDING FOR 4 DAYS WHEN SENT HOME AND I DON'T BELIVE IT WAS EXCLUSIVELY. I WAS PROMISED ALL THE KINKS WOULD BE WORKED OUT BY THE TIME I GOT HER HOME SINCE SHE WAS THERE FOR SO LONG, AND I'VE BEEN TOLD LIKE I SAID BEFORE BY OT AND NICU NURSES THAT SHE IS THE HARDEST KID THEY'VE EVER "TRIED" TO FEED. OTHER TRICK...TRY AND MAKE SURE YOU DON'T FEED HER WHEN JUST AWAKE AND REFRESHED...TRY AND CATCH HER ON THE DOWN CYCLE.....AND LIKE YOU SAID...HAPPY SMILEY FUNNY VERY ALERT...AND DOING DEVELOPMENTALLY WELL OTHERWISE...JUST ISN'T GAINING WT LIKE THEY'D LIKE..I'LL LET U KNOW WHAT HAPPENS FRIDAY! UNTIL THEN....CHIN UP!
    KATWOOD36

    Answer by KATWOOD36 at 10:31 PM on Jul. 22, 2009

  • PACIS' ARE SOOTHIES AND THEY SELL IN TARGET, GREEN ARE THE REAL SMALL ONES...NEXT IS THE PEACH...MY KID WON'T TAKE THEM, I HAVE ABOUT TWENTY OF THEM. DIDN'T HELP THAT MY HUSBAND JUMPED ON THE CHANCE TO TAKE IT AWAY FROM HER SINCE HE CAN'T STAND KIDS WITH PACI'S....KIDS....NOT BABIES...I COULD KILL HIM FOR THAT.....SHE SUCKS ON HER HANDS AND FINGERS..SO HOW DOES THAT FIT INTO ORAL AVERSION THOUGH???
    KATWOOD36

    Answer by KATWOOD36 at 10:33 PM on Jul. 22, 2009

  • Man, you story sounds identical to what I just resolved with my little girl. When she was fussy and wouldn't eat via bottle, I just hated the thought of feeding her through her tube. We would trick her all the time. She would suck on the paci but not the bottle nipple. So we would let her get a food rhythm with the paci and then carefully swap out the paci for the bottle. if he was tired enough she wouldn't notice and would feed from the bottle. Do you have any plans to wean her from the tube? Doctors in the USA are so quick to place a child on a feeding tube but most have no plans on how to wean them off.

    I found this forum group very useful and informative:
    http://tubefedkids.ning.com/
    squeekymoonkin

    Answer by squeekymoonkin at 9:56 AM on Nov. 3, 2010

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