hi, all,
        this is in responce to the query about the value of sns
supplementers. i helped council a good friend of mine when she was having
nursing difficulties. she kept very good notes and this is an extremely
long letter. she told me a could cut it as i saw fit, but i can't see
where i could cut w/o omitting info. for those of you that don't have
time, the bottom line was that she wouldnt' have been able to continue
their nursing realtionship w/o the sns, LLL, and a GOOD LC. hope this is
helpful- deborah danzeiser, LLLL webster groves, mo
---------- Forwarded message ----------
Dear Deborah,
  Most of these are straight from my notes I made as I went through this.
     My baby was diagnosed with disorganized suck.  Before my baby was diagnosed with this
problem I contacted two different LC's because
my daughter was not gaining much weight.  Their
only suggestion was that my milk supply was the
problem and to start trying to build it up.
     I should first start by saying that this
was my second child. The first, a boy, ate
like a horse.  We had no problems - an occasional
clogged duct, but nothing really.  I pumped at
work, most of the time just once a day and got
16 oz or more.  With my son, supply was never
a problem.  I had enough milk frozen to leave
on a business trip for a week with some still
frozen when I returned home.  I was not at all
concerned about nursing my second baby - before
she was born anyway.

     Melissa was nursing within 15 minutes
after birth. She was given no artificial
nipples not pacifiers.  She seemed to
nurse well, long and often, but was very
noisy.  I checked her latching on and it
seemed to be OK so I figured well this is
just the way she is.  At two weeks she had
gained a little more than a pound (1/2 less
than my son at this age).  My worries about
the noise were eased.  My milk had come in,
I was leaking a lot, I figured she must be
nursing well.
     At about 4 weeks I stopped leaking,
I figured my body had just adjusted to my
baby.  Melissa's bowel movements had gradually
changed from about three a day to one every
three days.  I (incorrectly) thought she was
just getting older and that this was what she
was going to do.  About this time I got mastitis.
Melissa also did not look like she was growing to
me so, at my 6 week checkup with my midwife,
we weighed the baby.  She had gained about 1/2
lb since the two week weight.  Again I had mastitis.
My daughter started at daycare and would eat
anywhere from 12 to 18 oz per day.  I had a hard
time pumping enough during the day to keep up with
her.  This was never a problem with my son.  I
started pumping evenings and would even get up
in the middle of the night to pump.  Pumping did
not get much easier as time went on.  Melissa was
still a very noisy eater.
     At 9 weeks Melissa would nurse long and
often, and still very noisy. I was still not
keeping up with her if I pumped only once a
day at work.  I ended up pumping two times
during the day and two times at home.  Only
every now and again I was full in the morning
when I awoke and Melissa's diaper was only very
slightly wet in the morning.  At her doctor's
appointment she had gained only 3 oz. since we
weighed her at the midwife's office three weeks
earlier.  My pediatrician just commented something
about the two week weight being wrong when I asked
about it and told me not to worry.
     At 10 weeks, I reweighed Melissa on the
doctor's scale - she had gained 2 oz. in a week.
By this time my son had weighed over 4 lbs more
than Melissa (they were born weighing within
3 oz. of each other).  I contacted my LLL leader.
We tried super switch nursing for one entire
weekend and I pumped for 20 minutes or so after
each nursing to build my supply.  Nursings were
at two hour intervals.  I did not feel much fuller
after the weekend was over.  I did not feel as
though Melissa was nursing well even though she
was nursing long and often.  She was still noisy
and did not seem to have the strength of such I
remembered my son having.  After feedings my
nipple was not hardly drawn out.  Melissa would
come off frequently, fall asleep quite soon after
starting to nurse and was very hard to keep awake
during nursings.
     I contacted a lactation consultant.  She
checked for tongue tie and latch on.  She noted
a slight problem with the way she moves her tongue
but did not think it was that bad.  She told me
she thought all I needed was to build my supply,
suggested I try to use a supplemental nurser while
doing so and sold me a 2.5 oz one.  She told me to
supplement with 1 oz. per feeding.  I guess she felt
that it would take no time to build my supply and
then I wouldn't need it anymore.  She also set out
a new plan for building my supply (really not too
much different from what I was already doing).  I
tried to use the supplementer for about 24 hours.
At the end of this time I was so frustrated I didn't
know what to do.  The LC had talked as though the
supplementer was a snap to use and yet I couldn't
get it to work.  My baby sucked in air when she
nursed normally and with the tube in her mouth,
this was much worse; the milk from the supplementer
leaked everywhere.  I sat time after time and watched
my milk spill everywhere but in her mouth.  On top
of that, she got less from me since her suction was
worse with the tube in her mouth.
     On monday I called the LC again after the
baby's weekly weighing.  She had gained no weight.
I was hoping for some encouragement and some help
in using the supplementer.  I had to be doing it
wrong.  If it was normally this hard to use, no
one would do it.  She, instead, seemed to scold
me for not feeding my baby.  She told me to feed
1 1/2 oz. per feeding and to put the supplementer
on my finger if I needed to.  (She also told me
she would get me to where I wanted to nurse my baby.)
     I started finger feeding, and looked for
a new LC.  A friend of mine suggested I bottle feed
after each feeding.  At this time I was tired, worried
and desperate to see her gain some weight because I
knew there was something wrong.  I did so and she
gained I think 4 oz.
     The new LC started me back to building my
milk supply and again told me I could bottle feed
or use the SNS (whichever I chose) after each feeding.
One very important thing occurred during this time.
My daughter, before the use of the bottle at home,
would have poor feedings where the nipple was not
even drawn out at all.  but every once in a while,
she would have a "good" nursing.  (By that I mean
better than her normal.)  I could tell by the amount
of sound she made as she nurse and then the next
morning I would be much more full.  These occasional
good feedings kept me going.  However, after the use
of the bottle at home, she had no more occasional
"good" nursings.  She was nipple confused.  She
never refused the breast, always she seemed to like
to nurse but she now had a much harder time figuring
out exactly how to do it.
     I talked with my LLL leader again and another
friend.  We took her off of all bottles.  I bought a
5 oz. SNS.  We tried to use the supplementer after
nursings to finger feed and to do exercises to bring
the tongue out and down. We tried to cup feed, finger
feed, or syringe feed at daycare.  While she did OK at
home finger feeding from myself or my husband, but she
stopped eating entirely at daycare unless I came and
fed her.  She would not even feed from her old bottle
and bottle nipple.
     I contacted another LC (I was tired of doing
milk supply building exercises).  She told me over
the phone as soon as I described my daughter's symptoms
that she thought the problem sounded like a disorganized
suck.  I was amazed and relieved.  Other than my LLL
leaders (thank God for them) this was the first person
to listen to me.  She told me there was very little other
than what my LLL leaders had me doing already that could
be done but she would come out and look at my daughter
anyway if I wanted.  I wanted!  I needed to know I was
doing everything I could before I gave up.
     The LC came and examined Melissa.  She confirmed
what she had said over the phone.  She described it as
inconsistent, erratic, and with her tongue curled up at
the tip.  She encouraged my to keep trying the SNS to use
it during nursings, to use the larger one and switch the
breast I was nursing from.  It would reward Melissa for
trying.  She did tell me that the supplementers were NOT
always easy to use, especially with Melissa's condition.
How I wish the first LC had just said something like that
to encourage me.  That was all I needed to hear to keep
trying.  She put Melissa back on bottles at daycare, but
none at home.  She thought that there was just too much
intrusion into Melissa mouth.  She told me to go find
several different bottle nipples to try out at daycare.
Sometimes babies will like one bottle nipple better than
another.  Surprisingly, one of the nipples we tried worked.
It even helped her to nurse a little bit better from the
breast.  She encouraged me to keep doing the tongue
exercises and to sleep with Melissa so I could get more
rest.  We also went back to the old pumping routine my
LLL leaders set out for me in the beginning in order
to keep my supply up.
     My husband and I wanted the baby to be evaluated
by an occupational therapist my LLL leader had found for
us to see if there was anything else we could be doing.
My physician this entire time didn't seem to think there
was not much of a problem.  He wouldn't give a referral,
he wanted to watch the baby for a few more weeks.  Once
Melissa started gaining, he saw no problem at all.  "Just
keep doing what your doing" was the advice of his nurse.
I was pumping six or more times a day.  I would feed Melissa
with the supplementer on, then finger feed and do exercises,
then pump.  It doesn't sound hard, but it was not so easy.
Even with my husband helping out quite a lot, it was taking
a lot from my while family.  All of this was on top of working
a full time job and taking care of a two year old.  The third
LC talked with my pediatrician's nurse and explained what
supplementing was and that this was why the baby was now
gaining.  She explained the problem had not gotten any
better and a referral might help the baby nurse better.
The nurse did not understand even though the LC tried her
best to explain the situation.
     We gradually got better at the supplementer.
Melissa kept gaining little by little.  I had that to comfort
me even though there were no "good" nursings anymore.  My
midwife wrote the referral to the occupational therapist.
She met with us and gave us more exercises to do for Melissa.
Upon the advice of my LLL leaders we tried remedial cobathing.
It may have been slight help, it was hard to tell.
     By her next check up with our new pediatrician she was
back up to about the 75%ile.  At least the supplementer was
doing its job and it kept her energy level up so she could
nurse as effectively as possible for her.  About this time,
my son began having difficulties at daycare.  We decided that
it was probably due to quite a lot of stress at home and too
little time with me.  I decided for sanity's sake it was necessary
to relax quite a bit.  I cut down to pumping when I had the most
free time (about four times a day).  We stopped doing exercises
while finger feeding.  I just supplemented when I nursed the baby
and we did the exercises to bring the tongue out and down three
times a day.  I needed to spend time with my son. We kept doing
the occupational therapy exercises, but after more than a month
of doing them I let them go for a few days.  There was no change
in her nursings so I changed to just doing them a few times a day too.
     The third LC gave me the phone number of a lady who had
3 children with a disorganized suck.  It was nice to call and
talk to someone who had the problem before.  Her children were
much worse off than Melissa.  I had to take stock in the things
I did have.  It helped me be more at ease with relaxing my efforts
some.  This was something Melissa was going to have to outgrow.
     Gradually her nursings got better.  At about 5 1/2 months
of age she got quite a bit better at nursing; she was now drawing
the nipple out much better than before and I stopped supplementing
at every feeding.  She still was not really good and when nursings
were poor I would supplement while nursing.  At about 6 months I
stopped supplementing altogether.  Nursings kept improving.
Melissa got rhino syncytial virus not long after this and nursings
went back down again.  I supplemented for a while and as she returned
healthwise, nursing improved too.  At about 7 1/2 months, Melissa
got pneumonia, not really bad, but enough to scare us quite a bit.
Nursings went down again but not near as bad as before and I did not
need to supplement this time.  With the pneumonia, if she refused the
breast, she also refused the bottle.  She just did not feel well
enough to eat.  Again, she improved and nursings did too.  Each
time she went down in nursings you could hear her noises of losing
suction while she ate get worse and supply went down.  When she
improved, supply improved and the noise became quieter and now
only happens every once in a while during nursings.  Upon successive
checkups Melissa stayed in the 75%ile on the charts.
     So many times I almost quit.  Many times I was in tears
(often in tears and on the phone to my LLL leader, my friend
or the last LC - I don't know if I would have had the energy
to see it through without them).  It was very reassuring to
see Melissa growing even though I knew in the beginning it
was due entirely to the supplementer.  I lived for weekly weighings
for a while.  The supplementer became my necklace, and it kept
Melissa healthy.  It was a wonderful graduation day when I
threw it in the trash.