Seeking words of wisdom! Since I work primarily in Public Health and don't
often see babies with major medical issues I need to learn more about this
situation and ways to support this mother (permission to post):

1st child; Baby boy born at 40 weeks, normal L&D at a birth center, no
meds.  Birth weight was 7lbs 9ozs. 1st PP visit by midwife, baby's weight
was 7lbs 3ozs; 3rd visit on Day 8 was 7lbs 0ozs which is where I was
contacted.  I saw baby on Day 10 with weight at 6lbs 15ozs. and he was not
looking good, loose skin, crying when roused but not really 'awake'.  Mom's
nipples were abraded and one had a crack at the base.  Parents just
informed that 1st PKU was positive for Cystic Fibrosis and 2nd was drawn.
 Mom reports normal breast changes in pregnancy.  Mom felt that
breastfeeding was going great--didn't admit to sore nipples until I pointed
out the damage.  Midwife reported concern with anxiety in mom (possibly her
maternal radar was firing off!).

Baby went to breast, never opening his eyes, suck/swallow with initial MER
then went to sleep.  Repeated on second side when removed from breast and
allowed s2s and self-latch.  Output had been on the lower edges of normal.
 Oral exam revealed posterior tt and possibly labial tie contributing to
low intake of milk. Baby had a few more swallows with finger support under
the lower jaw. Started pumping with hand pump immediately and fed 1 oz with
artificial teat.  Mom got a loaned 'old' Lactina from a friend but it has
not been effective so went back to using an Avent single-hand (very
rural-working on getting a effective double electric pump).  Mom breastfed
at least every 2 hours during mom's awake time and at least twice at night
using BN positioning and under the jaw support then supplemented with 1oz
of EBM every feeding for 3 days using paced feeding methods.  Weight check
at peds office baby gained 3oz in slightly less than 72 hours and was
stooling much better although mom now saw mucus in the stool.  2nd PKU also
came back positive.  Sweat test scheduled for yesterday late afternoon
(Seattle Children's Hospital) and frenotomy scheduled for today (Seattle BF
Medicine) a five hour drive from their home.  I haven't spoken with parents
today.

I found information in the current Guide to BF for Medical Profession.
 What else do I need to know to help this mom and baby?  How does CF affect
breastfeeding?  Will addressing caloric intake and frenotomy be enough to
help this baby be able to bf effectively or will there likely be some
muscle weakness or other physiological challenges?  Mom is willing to pump
but wonders how long?  Really, really, really wants her baby at breast!  I
would love ideas on how to help make her breastfeeding experience the best
it can be.  Any information is so appreciated!
Michele Crockett, IBCLC
Snohomish & Okanogan Counties Washington

             ***********************************************

Archives: http://community.lsoft.com/archives/LACTNET.html
To reach list owners: [log in to unmask]
Mail all list management commands to: [log in to unmask]
COMMANDS:
1. To temporarily stop your subscription write in the body of an email: set lactnet nomail
2. To start it again: set lactnet mail
3. To unsubscribe: unsubscribe lactnet
4. To get a comprehensive list of rules and directions: get lactnet welcome