<<
>     My question is "Can this truly be a dysfunctional suck?"  Am I being
> mislead by this baby's general contentment and weight gain? What am I
> missing?>>

i don't think you're the one missing anything;)

here's a story from around here that turned out great....  It was
extremely frustrating.  Baby was born at a freestanding birth center
(not in Atl, there are none here).  I wasn't involved in the birth and
didn't come in contact with the mom until the baby was 8 wks old and
mom's supply was very damaged.

Mom had cracked and bleeding nipples, and knew something was very wrong
by day four (baby loosing weight, very little stooling, minimal urine).
Mom went back to the birth center, mw's told her to syringe feed formula
(gave her syringe and tube) her milk came in (which wasn't until day
8).  Mw's taught mom to use syringe to feed baby by allowing baby to
suck on end of tube.

Baby was still nursing frequently, mom was crying through every
breastfeeding .  By 1 week, baby had gained and ped said everything is
fine (he's very very very supportive of breastfeeding).  encouraged her
to go to LLL, said she didn't need an LC.  Mom went to LLL and knew
immediately by the responses that her problems were beyond the scope of
the group meeting.  I know the leader well and she's wonderful but not
that experienced.  Had no real info to offer the mom but just keep
going, it'll get better, work on latch etc.

4 weeks later, baby was the same weight as the two week check.  Ped said
to supplement with formula as mom felt it was necessary, but he
maintained that there was nothing wrong with the baby or breastfeeding
(even though mom's nipples were hamburger)    At week 5, Mom went to see
some hosp based IBCLC's far far away from her (odd that she drove
literally to the furthest hospital she could have possibly chosen when
there are soooo many in atlanta).  Was told to feed at intervals of no
less than 2h, stop breastfeeding after a 10 min feed as it was using
more calories than he was taking in, pump post feed and give milk or
formula to saiety (sp?).  that was it.

Mom was an acquaintance of mine and I knew she'd had her baby, but she
wasn't a close friend and I hadn't spoken with her at all.  came to me
when a close friend of both of us urged her.   She couldn't keep going.
Pumping was producing no benefit, she'd begun to feed formula
exclusively at night......  I was supposed to leave for Nashville to
visit a friend, but stayed home so I could see her....my sweet dh came
home to hang with our 12 mo old so I could help mom.

When I saw her, she was pretty much a mess.  Sweet, loving and calm to
her baby, but when she walked in my front door, she literally started
crying.

Attempted to nurse her baby, he'd try, nurse for a minute, would get a
letdown, show good sucking/swallowing patterns.  Noisy breathing
though.  Then he'd come off, fuss, mom would switch sides, try again,
would be successful for about a minute, then he'd arch, fuss...this
pattern repeated for about five minutes until she pulled a bottle of
formula out of her bag and used it - when she called her mw's and asked
which nipple to use, they said an 'orthodontic' one.    She gave him 2
oz of formula...he screamed and screamed for more.

Could only listen to that for so long so I offered to nurse him....was
able to get him to nurse with him basically laying on my lap, head
hyperexended.  I knew something wasn't right with the breathing, but
didn't know of largynotracheomalacia until I posted this story to
lactnet 18 or so mos ago (you guys were *so* helpful......totally saved
this situation).   Asked mom about breast surgery and she had had
multiple biopsies on one breast in several spots.  He also had an
extremely high, narrow palate.  All babies seem to, but this was like
nothing i've ever felt.   it was so narrow, that as he sucked my finger,
it barely fit the curve of his hard palate.  it wasn't like anything
else i've ever felt.

Anyway, to cut the story to the chase.  He did see a feeding specialist
here in atl at a cranial and facial disorders clinic at one of the major
hospitals.   Mom was told he didn't coordinate his breathing right and
should be bottlefed from here on out.

It was at that point that the info from lactnet on largynotracheomalacia
started rolling in.   Sent her links to read from the archives, sent a
couple posts directly (with permission).  it was clear that's what was
going on.  ped concurred.  mom felt no need to go for consults with
specialists.  in case it clearly wasn't severe enough to need surgery
and there was nothing else to be done but wait for him to outgrow it.

Ordered domperidone asap.  Started More Milk Plus and Goat's Rue (iirc)
from motherlove.  The herbs helped but domperidone made the lion's share
of the difference.   She did finally switch to a rental pump from the
hosp instead of her hollister PY.  Didn't make a difference so she
stopped pumping (neither was yeilinding her much milk and pumping was a
big burden for her).  She knew she'd be supplementing anyway (at least
over the short term) so decided on the organic toddler formula and a
lact-aid.  As the days passed, he needed less and less supplement.  When
she was down to a few ounces a day it was a psychological hurdle for
her, but she decided to let it go and just nurse nurse nurse. Her supply
finally caught up.   She was supplementing with bottles initially from
3-5/6 weeks, then exclusively with the LA till 4 mos, then finally let
that go.  She stayed on the domperidone until he was 9 mos.....it was
her safety net and she was very very concerned about going without it.
Initial attempts at going off of it had resulted in a decreased
supply.   Finally one day, she said 'enoughs enough.  we don't need it
anymore'.  and like the last four ounces of supplement, she dropped it.
took about two days for her body to get up to speed on it's own, but it
did.

They're still going strong at 17 mos.    It was tough on mom and was a
case truly where largyngotracheomalacia set the stage for a bunch of
other difficulties - there was a cascade of events that ended with a
very damaged supply that was hard to improve, and a baby who, gosh,
maybe even was loosing weight at 5 weeks.  sounds very different than
the baby in your situation who has actually gained nearly 1/2 lb per
week - which is at the high range of normal.

anway, had to share b/c the outcome of the above story is so
heartwarming....and is a case in which the  largynotracheomalacia and
poor supply truly were problematic......

:)
katherine in atl

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