I am very far from an expert in the field of lactation, but since I have seen some babies with this very typical finding of tongue glued to the roof of the mouth I want to give my 2cc. 
You mentioned that baby had an unusual position emerging from the womb and this is in consistency with what I know. Sometimes this position of the tongue can mean damage to one of the nerves enervating the tongue due to a difficult birth. The abnormal movement of the tongue may have the same reason - so maybe it is a good idea for this baby to be checked thoroughly for some kind of a nerve damage too. 

Christina Yaneva
BF Peer Councellor
Bulgaria

--- On Mon, 5/11/09, Michele L. Crockett <[log in to unmask]> wrote:

> From: Michele L. Crockett <[log in to unmask]>
> Subject: what's going on? long story
> To: [log in to unmask]
> Date: Monday, May 11, 2009, 11:49 PM
> Help!  With permission to post:  I
> am working with a mom who is one of our WIC Peer Counselors
> and and experienced mom of 4 exclusively breastfed
> children.  Baby #4 was born April 5th in an completely
> unmedicated home water birth---dad caught as midwife did not
> arrive prior to birth.  Dad is not sure how baby presented
> but reported it didn't look 'right'.  He may have had his
> hands on his cheeks (think of the kid in Home Alone with his
> hands on his cheeks!).  He had quite a bit of bruising on
> that area of his face.  No molding I could see 20 hours
> later.  Weight 7'4".  
> 
> 
> 
> Mom has had uncomfortable latch issues with all kids that
> was likely caused by being 36-38 weeks gestation--all
> natural, not induced.  Baby #4 was actually at 40 weeks. 
> Other kids latch resolved with some basic position changes
> etc.  Worked with this little guy with out much luck.  His
> tongue was 'glued' to the roof of his mouth and he would not
> lower it.  Mom had a Lactina for back-up and to in sure
> good breast emptying especially on day 2.   Her production
> remains good, great MERs.  Continued offering the breast
> and backing up with EBM via dropper when baby was frustrated
> or mom was.  Had a brief episode with elevated jaundice
> resolved without any therapies.  
> 
> 
> 
> Saw mom and baby on day 6---dehydrated and losing weight! 
> Baby was at 6'6" and did not look good.  Latch awful. 
> Tongue up, small mouth and barely could extend tongue to
> bottom gumline.  It appears to me that the tongue is
> short?  Chin is recessed but not more than her other
> children's were. Okay wet diapers/marginal stooling. Mom
> left with MD appointment the next morning for follow-up, and
> instructions to pump more frequently and supplement EBM 2 or
> more ozs. every nursing.  MD confirmed my recommendations
> the next day although baby was not dehydrated by that time,
> fortunately.  She scheduled a follow-up in 3 days.  Within
> 24 hours baby was running a temp of 100.4 and rose to 104 by
> admit to ER locally.  UTI identified caused by posterior
> urethra valve, transferred to Seattle Children's Hospital. 
> IV antibiotics for four days then surgery to remove the
> valve and another 10 days of IV antifbiotics.  Mom
> continues to pump and supplement EBM.  No problems with
> breastfeeding in hospital but no support for solving suck
> issues.  I am not sure how assertive mom was about
> it---pretty overwhelming medical stuff already! 
> 
> 
> 
> Baby is home at 7'3" yesterday (5 weeks old) and just
> maintaining.  He spits up the supplement even in small
> amounts and held upright following feeds.  He wants to suck
> 'all the time'. Output is meeting minimum standards. 
> Tongue is down during nursing now due to mom using a nipple
> shield to help him. Mom can see milk leak out his mouth
> while nursing and she can see him swallowing. No choking or
> gagging or respiratory changes while nursing.  Nephrologist
> (spelling?) told mom that babies with these problems don't
> gain easily and if he doesn't begin gaining they will
> recommend a feeding tube.  Only exclusively (if you don't
> count the meds he is on) BF baby they've ever seen!  They
> have put him on antibiotics 'just in case' and he takes a
> 'salt' medication to help his kidneys. 
> 
> 
> 
> Baby continues to slide down the nipple in order to suck,
> tires quickly.  Over the weekend I took her a baby scale
> and a Lact-Aid supplementer someone dropped off with
> me...right now we need to help this baby gain a few
> ounces!  My gut says it has to be baby's tongue or
> something he can't manage to do with the suck.  I don't
> have a lot of experience here and it doesn't look like the
> tongue-ties I have seen a lot of...but not normal either. 
> This mom is my daughter's best friend and she nearly lived
> with us during high school years...and now she works with me
> and is like my daughter!  So sometimes I question what I am
> seeing too, due to the emotional connection.  I would like
> to have her evaluated by someone with more knowledge on this
> but two leading experts kind of glanced at baby in hospital
> (didn't even examine oral structures!) and said everything
> looked fine. And another nearby resource doesn't think she
> can help although she has only talked to mom on phone and
> me.  Again mom may not be very asser tive when she talks
> with them....I just keep coming back to his tongue doesn't
> look 'right' to me!  Maybe I am nuts!  Any ideas or if you
> have worked with a baby with his problems....we are open to
> any ideas!  Wish I had taken photos of his mouth this
> weekend...maybe I will try that this week.  Mom reports
> today that baby is maintaining weight over weekend but
> gaining.  She also says that it appears to her that his
> tongue pulls slightly to the right when he tries to extend
> it.  Needless to say we are both looking all the time! 
> 
> 
> 
> Thanks! 
> 
> Michele L. Crockett, IBCLC, LLLL, PCPA 
> 
> 
> 
> 
>          
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