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Posterior Tongue Tie – Part 1 February 1, 2012

I am on the “band wagon” when it comes to tongue ties. When people suggested that to me while I was nursing my middle child, I dismissed it; when people suggested it (in the beginning) while I was struggling to nurse my youngest daughter, I dismissed it. I thought, “Tongue ties cannot be that common, and it certainly is not my child’s problem.” I am sharing the first 7 weeks of breastfeeding my daughter, because I hope it will help someone else to press on and continue nursing – and even enjoy it.

I had the perfect birth; I had nursed two sons prior and was highly prepared to successfully nurse my daughter. I saw the lactation consultant twice in the hospital; I was so surprised when she said my daughter’s latch was not perfect! She was sucking in her bottom lip and not opening wide enough; I concentrated on the lip and dismissed the shallow latch. The second time I saw the lactation consultant she reminded me about the shallow latch and gave me some tips and I thought we were golden.

By the time I got home from the hospital my nipples were cracked and bleeding, but, I attributed it to the poor latch in the beginning. I was hurting so badly that I gave my daughter a pacifier more and more because I just could not bear to leave her latched on; she was nursing so much I “knew” she could not be hungry.

When my daughter was 5 days old she was still losing weight, which was unlike my boys but the doctor was not concerned. I asked him why she would root and cry like she was hungry but would not suck when put at the breast and he said, “babies eat when they are hungry – she’s fine.”

At 2 weeks old my daughter had lost over 9% of her birth weight (and a breastfed baby should be back at their birth weight by 2 weeks old), I was told to nurse more often and return in 2 days. The lactation consultant suggested nursing as much as possible along with breast compressions. I nursed constantly. 2 days later my girl had gained 2 ounces and the pediatrician felt all was well. I saw the lactation consultant, and she noticed my daughter was clicking and only sucking through the letdown, then constantly latching and unlatching. She said that I had oversupply and that my daughter was so used to the milk spraying in her mouth that she did not want to nurse after the letdown and that we had to work harder to keep her awake. She drank around ¾ an ounce after nursing twice on each side.

At 3 weeks old my little one had not gained anymore. All of the sudden my world started crashing, I began losing confidence. The doctor said my milk was not fatty enough and suggested bottles of “fortified” breastmilk after breastfeeding – I was in tears; I felt like such a failure.

I took this picture afraid breastfeeding might not last, I wanted to have at least one picture.

I called the lactation consultant again, she suggested using an SNS so I would not have to pump, she said it would help “teach” my daughter to nurse. I was surprised that my little one did not take much at all from the SNS, but, I also hoped that meant she was taking a lot from me.

I went back to the doctor for the 1 month check up. My daughter was still well below her birth weight. Now her pediatrician said the SNS was not good enough (and I knew he was right) and I needed to use bottles.

Feeling so awful – like I had been starving my baby for my own gratification of being “successful” at breastfeeding, I began offering bottles after nursing. That is when I realized something was not right with her mouth/suck. It took 45 minutes in the beginning for her to down a bottle – she would seemingly get fatigued. I started taking fenugreek and domperidone and pumping like a mad woman trying to get my supply back up – it had dropped so much from lack of my breasts being emptied.

I was pumping so often that even my 2 year old could put together the parts

I saw another lactation consultant who said my daughter’s tongue movement was incorrect; we also weighed her before and after a feed and she only drank less than ¼ ounce in a whole hour of nursing, than 30 minutes of bottle feeding – just for 2 ounces.

We tried visiting a chiropractor, we saw a speech therapist, and they couldn’t help. The doctor diagnosed my little one with thrush, but, the treatment did not help her nurse any better. I felt defeated and depressed and tried to change my definition of successful nursing – I found so much support in my LLL group, my moms’ group, the hospital lactation consultants, WIC breastfeeding counselors, my mother, and even women I had never met – even though so few understood. I joined MOBI’s yahoo group and found women who were struggling with similar things; and I highly recommend anyone going through substantial breastfeeding difficulty join the group.

One LLL leader had offered me information on posterior tongue ties. I had dismissed it at first since the lactation consultant and pediatrician did not think my little one had a tongue tie, but, I found myself browsing website after website about it in sheer desperation to make breastfeeding work. I could not believe what I was reading; every sign, every symptom – we had every single one.

I took my daughter to an ENT in our town, he said she was not tongue-tied (though he did not sound convinced to me), but, she was lip tied. I felt I needed another opinion so I asked for recommendations and chose an ENT who was recommended by some local mothers and also listed here: http://www.lowmilksupply.org/frenotomy.shtml.

*Edited to add that a list that seems to be more “elite” (more highly skilled providers) can be found through the Tongue Tie Babies Support Group on Facebook. 

Finally, at 7 weeks old, we made it to the ENT who immediately diagnosed and recommended releasing my daughters tongue tie. It was a laser surgery and took seconds – she cried less than 5 minutes afterwards and did not even bleed. Instantly her tongue rose higher than before (keep in mind, it always rose some, and could always stick out of her mouth, and there was no frenulum visible without a very thorough examination!) I was able to nurse her immediately afterwards.

When I got home each time she nursed her latch seemed stronger and she seemed to click less (clicking is a sign of bad latch/breaking suction, as is often the case with tongue tie). She refused the bottle! She would scream, turn her head, close her lips so tight they turned white, and if all else failed and I managed to get the bottle in her mouth she would spit the milk out – so I quit offering.

It has been 4 days, early this afternoon I had her weighed before and after a feeding and she drank nearly 2 ounces in only 15 minutes! Not to mention, my nipples are feeling so much better and I can truly enjoy nursing my baby now!

I really thought people were overreacting when they suggested posterior tongue tie in the beginning; but, having been through 7 weeks of stress, which dissipated in a matter of hours, I am so thankful for the suggestions and support. If I have another child that shows any signs of a posterior tongue tie or trouble nursing, I will immediately take them back to the final ENT that I took my daughter to and get him/her checked and released if needed.

I really hope by me posting this someone will stumble across it who may have otherwise weaned, or blamed them self for something not their fault. I am on a mission to raise awareness for posterior tongue ties, because I have a feeling they are way more common than we think and probably many women who wean earlier than they want or struggle with low milk supply and/or painful nursing have a baby with an undiagnosed posterior tongue tie. If I can help even one other mom and baby our struggles are worth it!

Nursing Perfectly after PTT was Released