Glad they are doing a sweat test as the screening tests done with pku is  
not 100%. I have a child w/ CF and would definitely continue breastfeeding. 
Do  NOT let them scare her into weaning. And they might do that since you 
can't  "measure" breastmilk intake and will say they need to know how much baby 
is  getting. First thing that will help weight gain is the baby will be put 
on  digestive enzymes that will help the baby absorb her milk and also may 
be  put on high dose vitamins (another thing they have a hard time 
absorbing). Both  of these can be done while still nursing. Reassure her that her 
breastmilk is  the best thing for her baby to help decrease or less severity of 
infections that  cf babies are more prone to get. AND it is much more 
important for her to nurse  than the typical non cf baby and longer than the 
first year too. 
 
The thing with giving the enzymes is that it may seem like she should put  
baby on schedule so it is easier to give the enzymes but it is ok if she 
gives  them and then baby doesn't eat as much as she thought. She could also 
give the  enzymes half way thru a feed or right after a feed and still be ok. 
Many moms  tend to put the enzymes with apple sauce (spoonful size) (yes, 
even before they  start solids).  Another trick-- I know a mom did is to get 
the moms finger  wet and then dip the moms finger in the enzymes and the baby 
sucks it off. I  would also encourage her to nurse, nurse, nurse and keep 
nursing at night even  as baby gets older. This will keep her supply up for 
if  she needs to supplement and of course help with weight gain. But I  think 
the best would be to keep baby at breast (easier for mom) and once enzymes  
are used it should help weight gain and mom may not need to supplement as 
much.  But if supplementing is needed breastmilk should be first choice and 
discuss how  to bottle feed the breastfed baby. 
 
It is important that you (or another LC) will be able to stay in contact  
with this mom because she will need continued help especially if baby gets  
sick or hospitalized and to balance growth and supplementing issues.
 
Sorry if I sound on guard but often times breastfeeding is thrown out  the 
window on babies who have growth issues and  it is so important  for them to 
have someone who knows how important it is and help them communicate  this 
to the CF drs/team she will be working with--like a dietian who hopefully  
will be on board and educated about breastfeeding in CF babies. But given the 
 already low breastfeeding numbers in the general population the numbers 
will be  even lower in CF babies.
 
 
 
Kim Ann Lorber----LLL Leader Quad Cities IA/IL
[log in to unmask] (mailto:[log in to unmask]) 
_http://cancercaughtme.blogspot.com/_ (http://cancercaughtme.blogspot.com/) 

 
  
 
 
In a message dated 3/23/2012 2:19:57 P.M. Central Daylight Time,  
[log in to unmask] writes:

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


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

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