Hi All,
I just thought I'd give you an update on the baby with congenital CMV
that has been on an apparent "nursing strike" at 4mo.
We have some good news and some bad news. The speech therapist says the
baby has poor control of the facial muscles and tongue and that whilst
she was able to nurse at first, when the mother's milk supply was
somewhat excessive, she now finds nursing properly an uphill struggle.
She stopped nursing because she got hypoglycaemic and dehydrated and it
seemed to put her off. She also has a problem with a bottle (can't get
suction). The speech therapist is working with the baby and they have
got the baby back to the breast, but not sufficient to totally feed the
baby. The plan is therefore to continue gavage feeding in parallel with
nursing, preferably (when the mother can get some help to manage it) at
the same time as the baby is held to the breast so she associates a full
stomach with nursing.
Unfortunately, the mothers pumping yield is not keeping up, and severe
formula allergies in the family mean that finding an alternative has
been difficult. I have strongly recommended the mother enquire about
longterm rental of a hospital-grade pump (after reading on Lactnet that
a lot of the cheaper electric pumps available on the high street are
very poor). She is taking fennugreek and trying to improve her pumping
technique, but she has resigned herself to this relationship with the
pump being a rather longterm one :-(
The other good news is that the "sensory nerve deafness" they diagnosed
has turned out to be a rare kind of glue ear, and even better, one ear
has spontaneously cleared itself :-)
The baby's epilepsy is still problematic, and the drugs she is on to
control it tend to make her drowsy, but hopefully that effect will
decrease as she gets older and bigger (she is currently about 8.5lbs,
but she was 8 weeks premie). They are investigating her for pyloric
stenosis or GER, as the baby has developed projectile vomiting, but that
is significantly better when the baby has not had any formula (my
conclusion: don't give the baby formula, but I'm not a doctor, so what
would I know? :-^). The baby needs to be fitter however before
progressing with investigations, unless her condition significantly
worsens.
It does seem that it's been three steps forward and two steps back, but
the mother now feels they are getting there. She is not confident of the
medical care she is receiving, especially WRT breastfeeding a special
needs baby - the doctors keep asking *her* how it's done, rather than
knowing themselves and their are constant assumptions that she is
exclusively formula feeding (which undermines her breastfeeding efforts,
she feels). But nevertheless, the mother feels very positive that this
baby is getting breastmilk at all, and that she has been able to nurse,
albeit not effectively in terms of yield.
Considering this is the same baby that was given a 25% chance of
survival at one time, I think she is doing OK. Thank you for all the
replies to my last post on the subject - your insights and experiences
are appreciated :-)
--
Anna H. (professional Mummy to Emma, Alice and Sam)
mailto: [log in to unmask]
http://www.ratbag.demon.co.uk/anna/
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