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Subject:
From:
Jaye Simpson <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Sun, 16 Oct 2005 09:55:43 -0700
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Hi all,

Ok, several things have come to pass.  To refresh, baby is now 10 wks old,
not meeting milestones, avoiding visually, dysfunctional suck, lots of
aspiration, etc.  Mom and dad took baby to see the neuromuscular therapist
who found baby's spine to be really out of alignment,  There was some spinal
cord pressure in the middle upper back as well as at C-1.  Possible pressure
on the brain stem.  She did a lot of work with baby, the back muscles were
REALLY tight - you can feel them like cords - they aren't supposed to be
that way.  She was unable to do an exam of baby's mouth because it was just
too tender, possibly due to the frenotomy. 

Parents took baby to see a Pediatric Neurologist 2 days later who diagnosed
Cerebral Palsy.  He is ordering an MRI for this Monday, full battery of
tests - everything that can be run will be run to find out just how severe
this is.  His comment tho for mom, was that baby is doing well given her
efforts to make sure he is fed well.  Most babies, he said, would have been
admitted to the hospital already for FTT due to his suck disorder.  Good Job
mom!  Family is doing infant massage daily and I believe this is helping
him.  They are seriously considering a G-Tube to eliminate any aspirations
from bottle feeding.  The Neuro encouraged mom strongly to continue to BF as
baby does not aspirate when he does and he needs the good oral associations
as well as the good oral motor development that comes along with BF.  The
G-Tube will be used to supplement as necessary.

Mom did some research and found a possible reason for baby's avoidance -
Cortical Visual Impairment - which apparently is what can happen when there
has been some anoxia to the brain.  We think that there definitely was  -
but are unsure as to when this occurred - was it around 17 wks pregnant when
there was a partial placental abruption or was it due to the overdose of
meds mom was given in labor that nearly killed her and left her with a very
sleepy non-responding baby?  The Neuro is going after all the hospital
records - apparently he is MOST unhappy with the situation, very concerned
and will be taking excellent care of this family.  (Oh, the Neuro and mom
used to work together <mom is a Ped RN> and are on great terms.)  Baby is
being placed into an excellent program for babies and children who need
assistance with PT, OT therapy of all sorts, etc.  They are in good hands
now.

So, what else can I do to help this family besides support and helping mom
maintain milk supply?  What would be the better resources for me to research
so that I have at least 1/2 a clue of what this family is dealing with?  I
have never worked with a baby in this situation so it is quite out of my
experience.  Mom has worked with server cases of CP in older babies in her
RN days so is scared out of her wits...Hard to switch out of mom-brain in
these circumstances.

All of your input thus far has been very helpful.  Thank you so much!

Warmly,
Jaye

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