possible tongue & lip tie tied in w/ question about supplimenting - Mothering Forums

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#1 of 11 Old 04-18-2013, 01:54 PM - Thread Starter
 
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My 10 week old has a possible tongue & lip tie and also a very high pallet. A little back ground...

My daughter was born 4 days before my due date via c section. I had a perfectly normal/wonderful pregnancy. She,was 6 lb 14 oz. 8 hrs after she,was born the nurses took her to do her bath & about 30 mins later came back & asked us if she looked or was acting funny at all, or ifshe was turning colors. She wasnt doing any of those things.

Well aparently she was turning gray for them & had to be brought to the NICU to find out what was going on. The nicu dr came in a little while later and told us,he was air vacing her to the childrens hosp. 40 mins,away. she was very very ill .

They didnt know if she was going to make it. She was on a ventalator for 10 days. Tons n tons of medication IV's. They werent feeding her, she was only getting nutrients from IV fluids. It turns out she has whats called PPHN (persistant pulmonary hypertension newborn). Its where the heart and lungs of the baby dont transition over to.infancy, they are still working as if they are in the womb. She also developed a heart condition called SVT, which is where the heart beats really really fast. she is doing much better now, got out of NICU after 30 Days, shes only on meds for the fast heart rate, n that should only be until shes 6 mo. Old.

Soo... She started feeding thru a feeding tube when she was 2 1/2 weeks old. And breastfeeding when she was 3 1/2 weeks. So now my concern is ever since she started breastfeeding shes,had a real loud clicking sound, cant keep suction on the latch (pops off a lot), hungry every hour it seems, very gassy, has started spitting up after every feed when i burp her. I have a lactation councilor and shes looked in the babys mouth & says she has a lip tie (her lip cant curl out when she latches) & grade 4 tongue tie her tongue doesnt go to tge roof of her mouth when she cries, when she moves it around it doesnt all move at the same time. Now i am having a dip in production because she cant empty me all the way. All classic signs of tongue tie. Oh yes n my nipples come out like flat pancakes when shes done nursing. She also has a,really high pallet from the breathing tube in her mouth for so long, and also from her tongue not bein able to reach up there. Does anyone have experience with this? Im taking her to a ENT on monday. Possibly to be clipped. Her pedi. Doesnt believe she has one. Thats why im takin her for a second opinion.

Another issue with this is she has,slowed gaining weight, she was 8lb 6.2 oz from one fri to the following fri. Then i did block feeding the rest of fri- sun night. She went back to the dr on mon n was 8lb 9oz, so she gained a few ounces. But its,slowed significantly.
so anyone whos gone thru tongue & lip tie? Clipping?

On to second concern which has to do with her dr not believing in her tongue tie. & her not gaining good weight as above, she wants me to suppliment with formula. I am dead set against formula. I pumped for the whole time we were in the nicu so she wouldnt have to do formula. Its this stuff called enfamil enfacare.

What would you do? Would you suppliment? Shes still growing just a little slow.. When i did the,block feeding every two hours it worked out n she,gained but it was frustrating cuz she would get so mad on the breast cause it slows down n the hind milk cones out but very slowly. Ugh. So i have lip &tongue tie issues and supplimentation issues.

If you read all of this i thank you.
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#2 of 11 Old 04-18-2013, 03:11 PM
 
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Looks like your post got cut off before you finished.  Could you fill us in on the rest of the story?




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#3 of 11 Old 04-19-2013, 06:26 AM - Thread Starter
 
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I finished it, sorry about that, i dont know why it submitted
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#4 of 11 Old 04-19-2013, 07:23 PM - Thread Starter
 
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#5 of 11 Old 04-23-2013, 09:39 PM
 
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We had a lip and tongue tie.  Several drs said it would not matter but it did significantly affect breastfeeding and I have been working on supply issues because it was not sufficiently established.

 

Our daughter was nearly FTT and it took her a few weeks to learn how to nurse right but she's gained a pound in twelve days.

 

Call Greg Notestine's office (Dayton OH).  He watched her nurse, evaluated her palate, her jaw movements, etc.  He charges $400 for both for laser - www.gregnotestine.com

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#6 of 11 Old 04-24-2013, 03:12 PM
 
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My baby is 3 weeks, and I was at the Breastfeeding clinic today due to low supply on one side. The doctor there found that my baby has posterior tongue tie. When she was checked by our ped. at her 2 week appt., the dr. said she had no tie. I had it clipped today. No point in delaying it. I need to find someone to check some of my other older kids. They say it's hereditary.

 

The LC are more in tune with these things, and at my BF clinic, they do several clippings a day, due to always seeing babies with issues, and this is many times the cause.

 

It's possible that that the dr. doesn't notice, but trust the ones who have experience. I can't tell you how it helped, since it was just done today. 

 

This could be the main reason of low supply, and not enough weight gain.

 

 

Good Luck finding someone in your area.

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#7 of 11 Old 04-24-2013, 04:17 PM
 
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If the LC recommends it, do it!  All of our br'ing issues turned around when I had my son clipped at 8 mos (and again at 9 as it grew back some).  It's very likely that weight gain will improve after the clipping, so don't delay.  Best wishes!


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#8 of 11 Old 04-25-2013, 12:11 PM - Thread Starter
 
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The ENT i took her to said he doesnt see a tongue tie. Only lip tie. Hes going to clip it. I know there is a hidden tongue tie from researching it & alpt of docs dont look for it... We will see if the clipping of the lip tie helps.
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#9 of 11 Old 04-25-2013, 06:59 PM
 
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There's a dr in ny that will look at pictures if you email. Ours in Dayton will too.

I wish i would have started galatolouges a few days before her appt So i would have supply for her. .. we're still dealing with supply issues but at 8 weeks she's getting 4-6 oz formula a day.

Good luck!!
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#10 of 11 Old 05-07-2013, 12:43 PM
 
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Any luck with that hidden tie?  I had several people tell me DD looked perfect but I knew the colic, constant spitting up (despite an elimination diet and proper positioning) and clicking was abnormal. I had my LC refer me to an ENT, the best in the area who clipped her tongue and lip.  The PA in his practice who saw us first didn't think she had a tongue tie, or at least not a serious one.  I would get a second opinion for sure if you still think there's a problem.

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#11 of 11 Old 05-26-2013, 05:56 PM
 
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Where do you suspect the hidden tie to be? I suspect one of my other children has it, but it doesn't look it.
 

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