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Breast Feeding
Tips
(please
see disclaimer at the bottom of this page)
Question:
My
husband and I are the parents of five-week-old twin girls, born at 33 weeks.
At this point only one baby has been diagnosed with BWS. We would like
to hear from mothers who have tried and/or succeeded at breast-feeding,
in spite of macroglossia.
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Tip
#1
I have a 17
month old girl with BWS. Her tongue was pretty large. It would constantly
stick out of her mouth about 1 1/2 inches and it was thicker on the right,
because of her hemihypertrophy. She had a tongue reduction at 15 months.
I wanted to let you know that I did breastfeed her and I still am, though
she does eat solid food during the day. I still breastfeed her to get her
to sleep. Unfortunately, she got used to that because I had to feed her
every 2 hours until she was a year old, because of her hypoglycemia. But,
I did want to tell you that it was hard getting her to do it at first.
She spent 8 days in intensive care after birth and during that time I tried
and tried to get her to breastfeed. She couldn't seem to figure out how
to do it. It wasn't until a nurse gave me a "breastshield" that everything
changed. It was a plastic nipple that you put over your nipple. It's very
long and she could get it past the thickness of her tongue. So, they finally
let us leave intensive care after she started drinking good with the breastshield.
It was funny because as soon as we got home I tried to breastfeed her without
it and she took to it right away. Maybe I was too stressed in the hospital
and she could feel that. She's been a pro at it ever since! Though,
she didn't want to breastfeed for 2 weeks after her tongue reduction surgery.
Tip #2
I also have
twins (now 10 months old) and only our daughter has BWS. They were born
3 months early at 27 weeks 5 days. My daughter never had any eating problems
in the NICU. That all started after we got home. We began using a different
bottle than what she had been using in the NICU and had no idea it would
cause major havoc on her. I tried breastfeeding them as soon as we got
home (they wouldn't allow it in the NICU) and both twins really enjoyed
it. The problem with my tiny little preemies is that they never got a strong
enough sucking action to benefit nutritionally from breastfeeding. My daughter
was a completely different baby at the breast. She was relaxed and content
and although not getting nearly enough milk to satisfy her hunger, she
definitely preferred the breast to struggling at that 'fake' nipple. Eventually
we found a bottle nipple that allowed her to get maximum intake with minimum
effort and that made a huge difference in her level of tension (she was
wound up like a clock up to that point and always so tight and tense).
This was about a month after coming home from the NICU. We had already
gotten into the system of feeding her with a bottle so she'd get the calories
she needed and then letting her breastfeed for comfort afterwards. This
always put her to sleep and made her very calm. I also pumped breastmilk
for the first five months. Feeding every three hours and pumping in between
will take it's toll though (especially with twins), so if this ends up
being the way you have to go, do it as long as you can without wearing
yourself down. Breast milk is best, but only when the babies have a mother
who can function to give that milk ;-)!!!!!!
Tip #3
I breastfed
our son from about day 8. He ended up quite good at it once we'd figured
out a way to handle the large tongue (trial and error with positioning)
but as time went on his tongue got bigger so eventually it got harder and
harder for him to make a seal good enough. Also he had obstructive episodes
while feeding and turned blue. This resulted in a trach at 2 months. Due
to the hypoglacemia (he wasn't getting enough milk from me), he ended up
on NG tube feeds as well as having a short breastfeed first. I did this
until he was about 5 months but stopped due to the enormous workload of
his care. I encourage any mother of a BWS baby to try and breastfeed as
they seem to make a better seal with a breast than a bottle. Of course
its a totally personal decision, but I found that it was a good therapy
for me while my son was in ICU and hospitalised that after all the "medical"
things that were being done, we could sit down and relax together for a
little while. I hope this has helped.
Tip #4
When I began
to breastfeed our son Joshua in the neonatal unit after one week of birth
it helped a lot to hold his head and hold my breast in my hand and direct
it into his mouth til he would latch on. Breastfeed now (he is 8 weeks)
is not a problem at all. He learned quickly and can even feed when I am
lying down at night. I think breastfeeding has been great for him. The
hospital staff encouranged it also since I wanted to and he has a large
tongue.
Tip #5
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