Good evening all,

Me: I'm an RN and retired LLLL with about 15 years experience working with
breastfeeding dyads. This is my first "complicated train wreck" though.

PTP. Baby #3 for mom (breastfed first two); baby boy now 3 months old and
12 pounds- birth weight just under 5 pounds. PTT dx late in the game at 10
weeks (I missed it; I have never seen a submucousal PTT and kept assuming
his issues were due to mismatch between his mouth and her nipple). It was
clipped in ENT office the next day. Mom has excellent supply, and is very
dedicated. I've been working with her since 1 week PP, through 2 bouts of
mastitis and various other challenges (nipple shield for first 5 weeks due
to very large diameter ~3cm nipples, weight loss after gaining well for the
first two weeks, dramatic drop in supply due to poor transfer, regaining
supply, cup feeding, finger feeding, SNS, several different special bottle
nipples recommended by various IBCLCs, etc.) She has seen three IBCLCs (one
works in pedi's office and is less supportive than the others). ENT has now
clipped the TT twice (about 10 days apart). Mom has also had baby to a
chiropractor (4 visits, ZERO improvement) and has had two visits with CST
so far and is willing to continue.

I was on vacation last week so baby was with another nurse who is very
supportive but also very inexperienced- excellent cheerleader, but
sometimes cheers when things aren't actually going well. Prior to my
leaving, baby was transferring only around 20-50mL at the breast. Mom's
nipple is very large diameter, and baby never gapes open very wide- even
when using laid-back positions and allowing to self attach. Before I left
mom was having good success with limiting time at the breast to 15 minutes,
interrupting poor latches, using compression and nipple shaping/breast
support to keep deep latch, and then completing the feed with bottle if
less than 100ml test weigh. Prior to this she was allowing baby to stay at
the breast for 1-1.5 hours with very little milk transfer, then pumping,
then bottle feeding or FF or trying the SNS, then starting all over again.
 Once she began to limit the time and only allow baby to practice
"effective" suckling, she and I were both hopeful that the second
appointment with the ENT would allow even more improvement. There were even
a few 15 minute breastfeedings where baby transferred around 80mL.

The re-do TT clip was done last Monday while I was on vacation. Since then,
mom has noticed no improvement. I stopped in today to take a look at baby
as mom is about to head out of town due to a death in the family, and she
contacted me to say he is now "pushing both the breast and the bottle
nipple out with his tongue."

When I arrived, baby was hungry (mom waited for me to get there!) but I
wanted to feel the TT and see how he was with a finger. He was initially
very uncoordinated (and he's never been great- typically he will get a
rhythm for only 5-6 sucks, then loses it again), and I noticed that
suddenly he is having chin/jaw tremors. He was not tongue thrusting or
biting as he used to do, but he was having difficulty maintaining a rhythm
with the tremors. They would last maybe 10-15 seconds, then resolve. Other
than the tremors, his weight gain is still going in the right direction,
developmentally he is smiley and happy and cooing.

Mom put baby to breast using nipple shaping and breast support plus
compression throughout. Baby sucks with a rhythm ONLY when milk is flowing
quickly, then he pulls his tongue behind the gum line and jaw movements
sort of "flip" the nipple in and out (mom is sore for the first time since
he was born, but she isn't even complaining about that part). I had her
break the latch and we latched on the other side. Again, as long as she
supports the breast (and she is small breasted, just very large diameter
nipples) and milk is flowing, baby was at least showing nice pauses/jaw
dropping, etc. and had no issues keeping up with the flow (I was wondering
if fast let-down was causing the tongue movements she described on the
phone, but now that I've really watched him, I think he is trying to KEEP
the nipple in his mouth, he's just going about it all wrong!). I did not
observe any tremors at the breast, just the sliding movements.

Anyway, this is too long, but I had her switch sides each time he started
the tongue/jawing thing, had her continue to shape/support her breast and
then we weighed him after he was at each side twice- 18 minutes and he was
falling asleep. He took in 114mL, which is far better than he has ever done
at any test weigh. He was asleep, obviously satisfied, and mom was
thrilled. But his suck is truly still very disorganized, the tongue motions
are making her sore, etc. so it's only a small victory.

Where do we go from here? Mom is willing to try an SLP/OT -- any
recommendations in the Maryland/DC Metro Area? She will be bringing the
scale with her to the funeral- leaves tomorrow and back Sunday. Baby is
going with her, she is bringing the pump and will continue to switch
nurse/pump/ensure adequate volume by bottle if test weigh shows too little
transfer after 15-20 minutes. I won't see her again until Wednesday of next
week, but am in contact with her if needed and said I would share anything
anyone can offer.

Thank you if you made it this far, and I will be glad to answer any
questions at all for clarification. It's been a long road, and this mom is
so dedicated!


Heidi Streufert, RN
Maryland

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