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And the breastfeeding troubles continue...got her tongue tie fixed!

post #1 of 16
Thread Starter 

So, as I posted before, Rachel and I had nursing problems from the get go.  Low supply, insufficient mammary tissue, etc.  Mostly got that figured out; haven't supplemented in 2 weeks.  But she is BARELY gaining weight, and is getting increasingly frustrated (as am I!) with how nursing is going.

 

Finally went to go see the IBCLC today, and have a reason!!!

 

Rachel has a 3rd degree lip tie (out of 4) and a 4th degree, aka posterior, tongue tie.  Poor little girl!  It took her over an hour to transfer just barely 2 oz of milk.

 

The nearest place that might perform the needed surgeries is 2 1/2 hours away; waiting to hear back from them.  If not, I'll probably have to fly up to Pennsylvania to have this taken care of.  And we'll probably have to pay out of pocket for all of this.  I am just so grateful that I have an official diagnosis that I agree with, and, God willing, the people and resources to fix this!

 

I'll keep you updated; please keep us in your prayers.

post #2 of 16

Thinking of you! I am glad you got the diagnosis and I hope that the closer place can take you. (((Hugs)))

post #3 of 16
Thread Starter 

We have an appointment for Wed morning with the surgeon 2 1/2 hours away.  And it looks like our insurance might cover it!  We'll see about that one, but we are hoping so. 

 

In the meantime, we are back to supplementing, and I am trying to fit in pumping with all that, too.  Gah.  I hate pumping, but my milk supply is pretty low right now, so I need to get it to where Rachel needs it to be, esp. once she can access that milk after the surgery...assuming that this dr. will correct the problem.

post #4 of 16

Wow.  That is a whole lot to deal with, but at least you have a path.  Pumping is a PITA, that is for sure, but I promise it is worth it.  I pumped and dumped for Aiden's first month of life and it was such a struggle.  But, now that he is still nursing once a day at 3, I am so glad I stuck it out.

 

If you can, try to make some of your pumping sessions some time for yourself.  Read a good book, eat a treat, meditate, etc.  If you need some support, try Kellymom and a yahoo group that is called (I believe) Pumpmoms.  Those ladies are seriously pumping, some for years, and so they are a wealth of info and support.  I did not post much on there, but was always amazed at women who had pumped every drop of milk their babies had eaten until they were past 1!!!! 

 

Definitely let us know how the surgery goes. 

 

post #5 of 16

Gosh, that would explain a difficult nursing relationship. DS had a short frenulum, right to the tip of his tongue. After the snip I felt an immediate improvement. And it was over in a matter of seconds. And her nursed immediately after the snip.

 

Good luck!!

post #6 of 16
I hope this fixes it. So glad you found the issue and can get it resolved.
post #7 of 16

aw emily i am thinking of you and rachel. we are still struggling here with alden - nakking - trying to nurse every 1.5 hours (aka i dont get off the couch) and still not quite back to birth weight after 3 weeks and 2 days...

post #8 of 16
Thread Starter 

Saw the surgeon today.  I thought his exam of Rachel was cursory at best.  He will do the lip tie surgery if we demand it, but he doesn't really seem to belive that posterior tongue tie exists.  Our insurance did cover that visit, but I feel like it was a waste of time, and it is highly doubtful that they will cover anything else at another place.  DH and I are now in a disagreement about what to do next.  I want to go to PA or NY and have this looked at, and corrected, ASAP.  I have contactefd the drs. up there and hope to hear back from them soon; I think the snow is impeding their ability to get to their offices and hear my messages!  cold.gif

post #9 of 16

A lot of doctors don't see tongue tie as an issue, unfortunately. DS1 was tongue tied, and the only reason it got clipped was because the ENT who was putting his ear tubes in at 7 months said he would clip it while he was under anesthesia anyway. Some home birth midwives will clip it in their office though. You may be able to try and call around to find someone who actually knows what issues being tongue tied CAN cause.

post #10 of 16

Oh gosh. That sounds so frustrating. I spoke with two or three peds who all were of the opinion that there was no need for surgery (surgery is a big word for this very brief procedure). And yet they all recommended circumcision.... ridiculous!

 

Anyway, try and find a doctor/dentist (here in Israel it seems to be ped dentists who are doing the research and the procedure itself) who knows what they are talking about. It is only now that breastfeeding is so much more common that 'they' are realising this is an issue/can be an issue. Bottle fed babies do not use/need their tongues like breastfed babies do.

 

I hope you can get the help you need

post #11 of 16
Thread Starter 
We leave Sundy to go to NY for an appt on Mon with Dr Kotlow, who is willing to take all the frenulum cases no one else will..  It will take him 10 min to fix both things and cost less rhan $500 for the procedure--and no scalpel, and no anesthesia. 
 
He will have me nurse immediately and help us fix things, and I have another LC appt on Thurs for another weight check and to work on redoing our latch.
 
I am supplementing using the SNS and pumping but my supply is still low.  I ordedred domperidone online yesterday.  I am scared that we will do this procedure. I will take all these herbs and meds, and I will still have touse that damn SNS and not be able to fully nurse Rachel on my own. 
 
I feel angry at the world...at me for not catching this sooner and not being able to give Rachel the one thing she wants, at my mom (IBCLC) for not seeing it, although she freely admits that tongue ties are not her specialty, and for freakimg me out every time I talk with her about never being able to produce enough milk, at Rachel for having these problems (I know that is completely irrational) and demanding from me what I can't give her, at Steve for not understanding how I am so tied to this emotionally...  I would call this PPD but it is pretty much all related to nursing, or not being able to.
 
Thanks for letting me vent. 
post #12 of 16

DDDC to say good luck with your doctor's visit. I hope all goes well and this is able to resolve things.

post #13 of 16
Thread Starter 

An update on us: We had the procedure to fix Rachel's tongue and lip tie done this morning. She is recovering well, and we have to keep doing some exercises with her tongue and lip everyday to keep it from "resealing." I had hoped that I would feel that "suck" immediately, but the reality is that we have both been doing this wrong for a month; it will take at least that long to relearn it all. I know she is capable of corrrect nursing, but she doesn't know how to do it yet. Frustrating for both of us still; I will have to keep pumping and supplementing using donor milk for a while, I think. But, at least we are now capable of solving the problem .  We are also trying suck training.

post #14 of 16

I'm really glad you were able to get it done. I've heard nothing but good things about clipping from people who have had the same problem. I've ordered domperidone, too. Mine should be coming in the next couple of days--I'll let you know how it works!

post #15 of 16

Mamma, just wanted to send you support and well wishes for your nursing relationship to take off over this next month!!  From a mamma who had a really hard time establishing nursing with my first (inverted nipples, tongue tie and overactive letdown response along with oversupply) I just wanted to pass on hope that it can and WILL get better!!!  My dd and I were able to nurse successfully and contently for 2+ years after 2 difficult initial months that seemed to take forever. 

 

We never ended up getting the frenulum clipped because silly me rejected it in the hospital when they first saw it...thinking, why on earth would you need to clip a part of my perfect baby...no one explained anything to me as far as what it was for or anything and I was naive and young and thought I knew everything. But even with that, she and I (with good support) were able to get a good latch, pull out my inverted nipples and cope with the other issues...

 

You are doing great and now that you have this obstacle passed, this relearning will be much less difficult. Whenever you find yourself getting frustrated or irritated...remind yourself...This Too Shall Pass. AND IT WILL!!!!

 

Hugs mamma. 

post #16 of 16
Thread Starter 

Things are going MUCH better.  It took about 24 hours after the procedure for both of us to get the hang of this nursing thing.  Nursing doesn't hurt anymore!  And I feel like I am finlly able to enjoy my baby.  I have to keep pumping one side after feedings--the one breast is hypoplastic and I am trying to convince it to make more milk--and I am still on all my herbs and am eagerly awaiting my domperidone, and we may need to supplement in the evenings sometimes, but things are definitely looking up!

 

Thank you for all of your encouragement and good wishes!

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