How long does dysphagia take to resolve?  I am seeing twins at home, both
with dysphagia and the NICU doctors who treated them as inpatients don't
plan to do a swallow video study until they are 2.5 months old.  Mother is
worried that they will never breastfeed after NG and bottle feedings for
that long.

This is mother's second pregnancy, BF for 15 months.  Twins were delivered
at 37+ weeks by c-section.  Both initially went to regular nursery and were
breastfeeding like champs.  Baby Georgia was sleepy with jaundice on day 4
and choked and went limp and blue with a strong MER.  She was sent to NICU.
Baby Cass went home with mother later that day, but had several choking
episodes at home and was readmitted through ER to NICU.  They came home at
10 days of age.  Baby Georgia has an NG tube, feeding pump and monitor.
Baby Cass is being fed thickened breastmilk by bottle.  Both babies are
setting a brisk pace for feedings and are gaining weight very well.  Mother
is outpacing them with an abundant milk supply.

Both babies obviously want to breastfeed.  We are trying all sorts of things
to make this more bearable and nurturing for them.  Waiting till the end of
August seems like a long time to wait, but the NICU docs say that babies
with dysphagia don't change their suck-swallow-breathe ability until after
that time.

Have others had experience with babies diagnosed with dysphagia?  I had
experience with another full term baby from the same hospital with the same
diagnosis that turned out to be totally wrong.  That baby had a minor
procedure with sedation and a nurse fed the baby before it was fully
recovered and alert.  They wanted that mother to NG feed for many weeks,
too.  Mother  followed her instincts and found another hospital that did the
swallow study after one month and there was no problem.
These parents of these twins ae very frightened with the choking episodes of
both babies, so they will do everything they are told to do.  However, Baby
Cass is having a very difficult time with constipation from the thickener,
so parents are getting little sleep.  Actulose is being added today to help
with stooling.
I would be interested in hearing from others who have seen babies with
similar problems.

Diane Perrone, RNC
Materna Wellborn
Algonquin   IL   USA

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