Wise ones, I need input on a complex case.  Mother endorses my request. Baby
has VATER syndrome without known neurological problems.  The VATER means he
has to remain on antibiotics for ureter reflux, his spine is not to be bent,
and he has a stoma and colostomy bag.  No esophageal or radial defects.
Hearing is normal.  Alert, attentive.  He had surgery to create the stoma
the day after he was born.  He spent ten days in the pediatric hospital.
Mother protected him from all ABM in two hospitals.   He could not maintain
oxygen well enough to come home sitting up in a car seat.  This is believed
related to the defects in his vertebrae allowing pressure on nerves when he
is bent.
Best of all for breastfeeding, he was tongue-tied.  The pediatric surgeon
said that wouldn't affect breastfeeding and clipping would stress him.
Mother couldn't get him to breastfeed.  In house calls after they came home,
we could get him on and he would go at it, but it was painful.  Chin
pressure eased the gum clamping, but increased the tongue problem.  Mother
bottle-fed her milk.  Only one, certain, NUK nipple he would take and could
work.  He always tucked his lips in and leaked milk on the bottle.  Mother
pumping more than needed.  She tried cup feeding, but he choked and turned
blue once, so she was scared to.  (He has done this on bottle)
Tried both suck-training methods in the Answer Book (Pushing the tongue down
and out and walking back the tongue)  The first was used extensively.
He likes to sleep long periods, 4-6 hours.
Mother pushed to have him clipped.  Which the surgeon finally did under
general anesthesia, at two and a half weeks.  (I swear it was just a
frenulum!)   He extends his tongue over his gum and cups the sides of
mother's nipple during breastfeeding.
He passed his car seat test.  So can sit up and breathe.
Mother has had help from two LC's and me, her Leader.  Baby is five weeks
and has gained over 3 pounds.  He loves the breast.  Wants to live there.
He can nurse for an hour and come off hungry.  Downing 4-6 ounces of tube
fed milk.  His clamping gums have eased a bit.  Baby still applies a lot of
pressure with his tongue, rubbing back and forth.  I have not felt a wave on
my finger.  Mother says he will do so for her finger now.  Mother is finger
feeding and nursing as much as she can stand it.  He leaves a perfect crease
from his pressure.  Resists opening his mouth and keeping it open more than
I have ever seen before.
Mother may have let him slide into this because she felt he had trouble
making suction if he had a mouthful.
Inserting her finger while feeding at breast, she finds he is not on the
breast as far as her finger can go in during finger feeding.  She knows the
pain is less when he is on with a huge mouthful of breast.  She managed this
with an empty breast today.  The hospital LC, at four weeks, said to only
breastfeed (no bottles)for 24 hours.  She has done that some days.  He
nurses very long and frequently then.  Suck does not improve.  In the last
week, she has only breastfed or finger fed.
Mother has also survived many plugged ducts and thrush.  We expect the
thrush, since he is on antibiotics.  Gentian Violet resolved that.
Plugs make her wary of breast compression.
Her supply is far above need, but getting the milk out clears the plugs.
She is stashing in other families' freezers.  She has had to adjust which
milk he is given because of green stools this week.
Because of compromised intestines, doctors want him fed only her milk until
one year.
Mother knew I had run out of tricks when I suggested a nipple shield.  She
had seen me wave them with warnings at my meetings.   We couldn't get his
mouth open on the shield and he wasn't getting any milk.
He choked with SNS at breast.
I have mentioned CST.  Mom is understandably scared for her fellow who has
so many concerns.
We are supporting with words, food etc.  She brought him to our regular
meeting, tonight.  He is a lovely, big fellow.  All could admire him.   They
are very attached.  They sleep together.  I just padded a board so she can
lay him flat in her sling.
Clearly mother is very determined.  After being ordered to wean her first,
she had planned to be determined.  We could not imagine the fight in store
for her.  I would like permission to share any wisdom you may direct our
way.  Thank-you so much,  Pam Easterday  LLLL Ohio USA [log in to unmask]

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