Permission from Mom to post.  I've been working with her online for a few
months and we've tried all of the usual things.  Mom is also seeing an LC
but is interested in opinions from other experts in the field.  This has
gone way beyond my scope of experience.

Below is an email that she has sent to Dr. Newman explaining the situation.
Please feel free to reply off-list.  (Very long email below)

Carrie Patterson
LLLL, Dacula Georgia
Executive Director - ProMoM.Org



I am desperate for nursing help.  I am consistently working with a lactation
consultant and we still need help.  I have many many strikes against me and
I am still trying to nurse my daughter.  I think we have tried everything
but maybe you may have some words of advice - I dreamt of a beautiful
nursing relationship - I took Bradley birth classes and attended Le Leche
meetings before I had my daughter.  I think formula is awful and wanted
nothing to do with it.  I didn't even buy bottles before I had my child.  I
had bought nursing clothes to wear - I was so excited.  Yet, this whole
process has been a dedicated nightmare.  I will not give up.
 
I will try to keep this email as organized as possible to better explain
what is going on.  Unfortunately it will be quite long.  
 
My daughter was born 4/14/06 via an induced vaginal birth (her actual due
date was 4/28). She weighed 7 lbs 14 oz. I have several autoimmune issues
(auto immune delayed pressure urticaria w/angiodema - specialist has given
Breast feeding an ok - have been in complete remission for extended period
of time - whenever I have a flare up it is managed with IVIG infusions (5
days each course) - last infusion was a prophylaxis at 36 weeks pregnant)
and my doctors decided enough was enough despite my good health and the
babies good  health and they wanted to induce in order to have everyone on
board in the event of a medical crisis.  My doctors were concerned about an
anaphylactic reaction to childbirth.  Her birth went okay (however nothing
like the natural birth my husband and I had worked for)  except that I ended
up asking for pain medication towards the end of the induction because the
induction was horrible.  She was born and we were both medically okay and I
was able to attempt to latch her on directly after birth.
 
I stayed in the hospital for 3 days and attempted nursing many many times -
I was using a medela classic in the hospital to draw what I thought were
flat nipples out.  I never really got any milk from the pump but she seemed
to accept my breast a bit better with more extroverted nipples until about
day 3 -I was discharged, told to try to nurse her every 3 hours.  I begged
to take the pump home to keep my nipples out  and they didn't have anyone to
handle that on a Sunday- so we went home and planned on calling the hospital
Monday to get a pump -I was scared she wouldn't take my nipples without the
pumps bringing them out.  And I was right - she wouldn't nurse when we got
home but for 2 -4 minutes at a time.  
 
On Sunday/Monday Violet wasn't acting right and she stopped making diapers -
we picked up the medela classic pump late Monday afternoon and the LC was
quite rude to us and told me I had cone shaped boobs and to supplement.  I
didn't believe her because I was told in Le Leche meetings - no artificial
nipples and don't supplement and the way she said it made no sense.  She
didn't quite explain how to pump.  She didn't say all that much when she
watched Violets latch.  My husband and I went home very aggravated and were
not sure what to do.  I went home and pumped half heartedly and kept trying
to latch Violet on - it was going horribly.   
 
By Wednesday (5 days post birth) Violet stopped making diapers except for
red dust and her soft spot was sinking in.  She turned a sort of grey color.
Every time I had been trying to nurse Violet - she would scream this
horrible scream until she fell asleep - she wasn't getting anything and I
couldn't handle it.  I found a new lactation consultant (Linda).  
 
When we went to see Linda - Violet was down to 6lbs 10 oz and in trouble.
Linda looked at my breasts and explained to me that due to the shape and
distance apart between my breasts - I have insufficient glandular tissue.
And also that Violet has an extremely high palette.  She watched me try to
nurse Violet and Violet immediately shut down - we got her to sort of latch
and supplemented/fed her with a periodontal syringe.  She taught me how to
thumb feed her with the syringe and how to try to latch and feed her with
it.  She told me I would never have a full milk supply and we had to
supplement.  She said rule number one is you must feed your baby - she
herself hates formula but said you have to feed the baby.  She said my milk
hadn't come in yet but still it could - I had to do what I could to make it
come in while we worked on Violet learning to latch.  According to Linda -
Violet never latched on properly because she didn't take my areola into
mouth so she never stimulated my supply.  She then told me to rent the
lactina, double pump every 2 hours, power pump (10 on/off for an hour) 2x a
day) and to thumb feed Violet.    She sent me home with 2 small cases of
formula, the pump, and a pack of periodontal syringes.   Before I went home
we stuffed her with formula and by the end of my appointment - she looked
pink again.
 
I came back to see Linda every few days for the first 2 weeks to make sure
Violet stopped losing weight and to see if my milk would come in.  By the
end of the second week I had started to withdraw from Violet a bit because
she screamed when she latched so I was thumb feeding her all the time and I
felt like I couldn't ever hold my baby and feed her.  I felt like I was
always trying to work with her.  Linda gave me a haberman feeder to use and
I finally felt some peace with Violet  - at this point I was only pumping
about 4 ounces a day - 
 
I was doing everything I could - We co sleep in our family - Violet has a
sidecar to our bed, I spend time skin to skin with her, I wear her in a
sling a good part of the day, I practice attachment parenting - and yet my
milk never came  in.  I saw Linda frequently - pumped like a mad woman and
when Violet would allow - I would hold her to my breast - yet she still
screamed her head off until she went limp. I mostly gave up on latching her
and just focused on pumping every 2-3 hours.
 
Luckily my family is all Canadian (I live near Detroit - they are all from
southwestern Ontario ) and their family doctor is pro breastfeeding - so he
wrote my mother in law a very large script for domperidone and I started to
take that.  That upped my milk supply to its current level of about 9 ounces
a day.  I am taking between 3-4 ten mg tablets 3 times a day.
 
On one visit with Linda - we did try an SNS and formula ended up up her nose
- in her eye, etc.  Her latch isn't good enough.  Violet still hates to
latch.  She still screams.  I could have milk dripping out of both breasts
and she still wont take it.  We also tried a nipple shield but she doesn't
suck hard enough to draw milk through it.  
 
 
At my last visit with Linda (2 weeks ago), Violet latched on for 5 minutes
and got 4 cc's - I realize this is next to nothing - but I cried - it is the
only time she got anything at all from me.   Her growth is on track - she
was 11 lbs 4 ounces.  Every appointment we have had - she has made the
proper gains (about an ounce a day).   I see Linda every other week and talk
to her on the phone often.  She says I am the most dedicated Mom she has
worked with - I really want to nurse my baby I am not sure what else I can
do - the only thing Linda has asked me to do that I haven't done - is suck
train my baby - she seems to hate it and I am apprehensive about it - it is
probably because the first 2 weeks I fed her like that when everything was
so hectic.
 
I know some may say take away her bottle and force her to nurse and when I
have tried this - she screams until she is bright red and then she shuts
down.
 
Even now, when I squeeze my breasts - I only have one or two hard spots and
if I squeeze those I get a quick spurt and that is about it.  With Violet
not wanting to latch that well - the only stimulation I get is the pump.
The 9 ounces I pump I give to her in her morning bottle (4 ounces) an ounce
in the afternoon, and her bedtime bottle (4 ounces).  (she eats 3-4 ounces
every 3 hours or so except at night she sleeps from 10 pm -6 am -)  I am
still pumping every 3 hours - I never notice a difference in total amount if
I pump every 2 vs 3 
 
I am continuing to take the domperidone.  I was taking more milk special
blend (fenugreek, goats rue, blessed thistle, etc).  I ran out of it and
ordered more milk plus and goats rue on its own - it should be here any day.
I also drink breast tea from the breastea.com - I don't know what else I can
do.  We have done everything from co bathing to nipple shields to a pumping
schedule that is nuts)  
 
Linda says her goal is to get Violet to my breast with the SNS.   I hope
that is an achievable goal - I don't think I can ever get her off of formula
- I am sick of pumping but I committed to doing it for the first 4 months.
I sometimes wonder if my 9 ounces a day is worth it.
 
Tonight out of nowhere, Violet latched on for about 4 minutes - I heard
about 4 swallows.  When she started to get fussy - I gave her a bottle ( we
quit using the haberman at about week 5 and went to  Playtex nursers)  When
I laid down with her tonight to put her down - she suckled a little again
but no swallows (I had pumped 15 minutes previous - I don't think I had
anything there for her to get) Her occasional latches (1-2x a week) are what
give me hope that maybe I still can nurse my daughter.
 
Can I do anything else?  Thank you so much for your time.    
 
I know some may say take away her bottle and force her to nurse and when I
have tried this - she screams until she is bright red and then goes limp.
It breaks my heart.
 

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