The Long Story of a Short Tongue: Part Two

Written by Laura on December 25th, 2010

Breastfeeding, Breastfeeding Alternatives, Feeding With Love
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(Part one of this story was published earlier this week.)

Happy, healthy breastfeeding BearI am very active on a Catholic parenting forum and a local AP forum. I often go to them for advice, support, and prayers.

When I first began having problems feeding my forth baby, I posted a prayer request on my Catholic forum. A woman wrote back that she was praying for me and asked a series of questions. The final one was, “Have you had him evaluated for a tongue tie?”

“No,” I said. “He can stick out his tongue.”

“Check him for a type four tongue tie,” she wrote back. “Your story sounds similar to my son’s and he had a posterior tongue tie.” I thanked her but put the thought to the back of my mind. Of course he didn’t have a tongue tie; he could stick out his tongue!

Although we had been having frequent weight checks, Bear hit rock bottom when he was just over a week old. I took him into the doctor around 9 am for a weight check and he was six pounds, 2 ounces, nearly a pound less than his birth weight. The doctor instructed me to keep supplementing after each feeding and come back for another weight check. I changed the baby into a cloth diaper and went home.

He slept all afternoon and when I changed his diaper around 3 pm, I noticed it was damp (but not soaking, as it should have been) and that his urine was red, like blood. Alarmed and trying not to panic, I called the LC at the hospital, who suggested double pumping to boost my supply and supplementing with more than an ounce of breast milk after each feeding. I agreed, feeling that something was wrong; he just wasn’t acting like a normal nursing newborn.

That night, I sent my husband out to rent a double pump. While he was gone, my doctor called us at home. He apologized for his behavior during our morning appointment and said he “wasn’t thinking. Bear has lost twelve percent of his birth weight, and normally I would have admitted him to the hospital for IV fluids.” He asked when I was going to feed him again and advised me to call him back when the feeding was over.

I felt wretched. I have struggled with PTSD since the birth of my third baby and I was afraid that having another child admitted to the hospital, hooked up to monitors and IVs, might bring on flashbacks. I quickly gathered my nursing supplies (a burp cloth, the tube and syringe, expressed milk and a bottle) and roused the baby. It took 20 minutes but I nursed him and then finger fed him with the tube. At the end of the feeding, he was laying on the couch quietly, smiling and watching the ceiling fan.

I called the doctor back and he expressed relief that the baby had eaten well and was now content. I was to keep an eye on him over the weekend and bring him into the office for another weight check on Monday. I began writing down his wet/dirty diaper count, how long he nursed, from what side and how much of a supplement he took. I finally had a written record to show me how well he was doing, something I should have done from the beginning.

That weekend, my mother arrived to help. She had nursed all three of her children into toddlerhood and helped numerous women with breastfeeding problems. She would sit by me, help Bear latch on again and again, snake the feeding tube into his mouth and help supplement him. She did this every feeding, all day. She would laugh at his antics, like latching off to suck on the tube, not the nipple, and say “I’ve never seen a baby do this before!”

By the next weight check, Bear had gained 4 ounces in 36 hours. The doctor was impressed, although we were still supplementing with the tube. I took the baby to a chiropractor appointment and she adjusted him while he was nursing. At the advice of my mother and husband, I went out a brought a new nipple shield. That afternoon, he nursed on both sides and took a full feeding from the breast. We were thrilled!

On Thursday, I took Bear in for a final weight check. He had gained NO weight in four days, in spite of nursing well. That evening, he was back to playing latch on/latch off, refusing to nurse, and crying. I was supplementing again, and he appeared to be taking a full feeding from me, even though he would take a 2 ounce (or more) bottle post-nursing session, and I was pumping 3-4 ounces a side. Out loud, I said I thought everything was fine. Inside, I was worried that something was wrong, but I was afraid to admit it.

On Friday, he had lost two ounces.

I had HAD it. Everyone kept telling me, “oh, when this or this happens, he’ll get it” and he wasn’t. He wasn’t nursing well at all from me; he was biting or chewing at the breast if he latched on at all. I was tired, exhausted, and frustrated. I even looked at my husband once and said half-joking, “Honey, I think the baby’s broken.”

I posted on my AP forum and Facebook that the baby was 16 days old and still not up to birthweight. I said I needed an LC or La Leche League Leader to come out and check his latch because, I finally admitted, something was wrong.

Within minutes, I had a response from a friend and LLL Leader. She gave me the number of a former Leader turned Lactation Consultant. I called “Bee” Saturday morning and she returned my call that afternoon. I could hear a slight edge of panic in her voice when she asked, “He’s how old and not up to birth weight yet?” She promised to come out that evening and for the first time I felt like I might be getting some answers and seeing the end of the nursing, pumping, supplementing, weight check cycle.

Bee arrived after dinner, just as I was sitting down to feed the baby. She and I quickly stripped him and weighed him on her portable scale. Seven pounds even. She then sat down with me and we spent forty-five minutes trying to get him to nurse. She showed me some tricks to work with the nipple shield and to get him to latch on. The she did the “after” weight check.

He had gotten three-fourths of an ounce from me.

Bee looked at me and said, “This baby fooled me. I knew he hadn’t taken a full feeding but I thought he had gotten an ounce or so, not that little.”

My husband quickly made up a bottle of expressed milk for Bear and he gulped it down and then asked for more. Bee instructed us to feed him as much as he would take, so my husband made up another two ounces. In all, my seven pound baby took five ounces from a bottle before he was satisfied.

When the baby was happy, Bee preformed a digital exam. For five minutes she sat manipulating her finger in his mouth. She finally looked at me and said, “I’m pretty sure he has a posterior tongue tie.” She went onto say that most people think of a tongue tie as a thick membrane that extends out to the tip of the tongue, giving it a “forked” appearance. While that is one type of tie, my son had a different kind, where the membrane at the base of the tongue was thick and inelastic. He couldn’t maintain a good suction on the breast or suck effectively enough to transfer milk. Babies with tongue ties often have poor weight gain, are fussy, tire out easily from sucking but not getting enough milk, and “make noises” when nursing. Although they may receive chiropractic adjustments for the poor latches, the adjustments don’t “stick.” Bear had all these problems.

Bee took out her computer and portable printer and typed up a “game plan” for us. She instructed me to try nursing when he was hungry but not to force the issue; if he wouldn’t latch after a few minutes I was to bottle feed. She wanted me pumping around the clock, day and night, and feeding him as much as he wanted. I was to carry the baby skin to skin in a sling, to help him grow and mature. She took all my doctor’s information and promised to fax him her notes and findings that Monday so that we could take the baby to the ENT to get his tongue tie clipped as soon as possible.

That night, I got on my Catholic parenting forum and posted to the mother who had initially suggested a posterior (Type Four) tongue tie. She responded with links, pumping tips and support. She warned me that it might be hard to find someone to clip his tie but it would be worth it in the end if I could get my baby to nurse.

Right before bed as I was sitting down to pump, my husband asked me if I was upset. I said no, I was glad we had a diagnosis and a game plan. I felt relieved that I could go to church or run an errand without having to worry about feeding the baby in public, which would have been impossible to do before. I sheepishly admitted, “I’m glad I did all the wrong things, like giving him a bottle of formula or expressed milk. I think he would have gotten very sick if I hadn’t `given up’ for the moment and followed my `something is wrong and he needs a bottle’ instinct. I thought I was crazy but I guess my mommy-gut was right after all.”

The following Monday, I took him to the doctor for another weight check. He was over his birth weight and the doctor was thrilled. When I asked about the tongue tie, he admitted he didn’t know much about it and referred me to an ENT (ear, nose and throat doctor).

The ENT looked over Bear and the notes the LC had faxed to him. He thought he didn’t have a tongue tie and that perhaps it was just a neuro-muscular problem that the baby would outgrow. He said that if he did, he (the ENT) wanted to wait until Bear was 13 pounds before performing surgery as it would have to be under general anesthetic. I thanked him for his time.

I went home from that appointment with an unsettled feeling in my stomach. While I was thankful the doctor didn’t rush to do surgery on an eight pound baby, my research had shown me that an infant would not need general anesthesia for a tongue tie, even a posterior one. I was convinced that there was something physically wrong with the Bear’s mouth, as it made no sense for an otherwise healthy, full term baby with an experienced mother to be having this many problems!

As I began the search for someone, anyone, who knew about posterior tongue ties, I had to search inside myself. Why did I want to keep breastfeeding? Why was the method of feeding my baby so important to me? Was I still bonding with my baby, even though I wasn’t feeding him in my preferred way?

In the end, I realized that I was working so hard to breastfeed because I truly enjoyed it. I like breastfeeding – it is pleasant, fun and normally easy. It was a way for me to bond with my baby. Because I wasn’t able to breastfeed, my therapist instructed me to wear him in my sling and co-sleep as a way to promote bonding. I also made sure that I took time to enjoy just him and marvel in his sweet babyhood.

Pumping with four children, however, was very difficult. The older children would fiddle with the knobs or play with the tubing. As soon as I sat down to pump, someone would want a snack or drink, and I couldn’t just get up to help them. PuddinPie was only sixteen months old and was jealous of my pump and all the time it took! It was especially difficult when Bear would cry, wanting to be held or fed. I couldn’t cuddle him to my chest while pumping; the horns and plastic bottles would get in the way. My children and I like to go to the zoo and parks, yet I couldn’t take them anywhere without my husband or another adult to watch them while I popped back to the car to pump. I didn’t feel like I could pump in front of our friends. I would openly NIP but there was just something different about pumping. I confessed to my husband that I didn’t know how long I could exclusively pump because I didn’t feel like it was fair for my three older children to give up so much of their time for me to provide food for their brother. The stress was also taking a toll on my supply, and I sometimes had to add formula to his bottles of breast milk.

Bottle feeding was our only option for Bear. Although people would suggest using an SNS or Lact-Aid, he couldn’t physically nurse. It wasn’t a matter of my supply; it was impossible for him. Finger feeding left his need to suck unsatisfied and took more time than bottle feeding.

Thankfully I had help. My husband gamely took a nighttime feeding so I could pump and then get back to bed. He told me my only job was to make milk for the baby and take care of the kids. He cooked a lot of dinners, washed a lot of pump parts, and even ran out for an emergency can of formula when my pump broke at 2 am. When we went out as a family, he made sure I had all my pump parts, the car adapter, plenty of cold packs for the bottles, and a Snuggi so I could pump discreetly.

It was shortly after the pump broke that I finally tossed out the first ENT’s idea of waiting until Bear was 13 pounds and began calling different ENTs for a second opinion. My good friend provided me with a list of breastfeeding-friendly ENTs and oral surgeons. Not a single one took our insurance.

Just as I was reaching my breaking point, the LC called and gave me the name of two ENTs her colleagues had worked with and who knew about a Type Four Tongue Tie. I called Dr. R at a local hospital. She had an appointment open that week, so I took it and dragged my three youngest to the office.

Dr. R is a pleasant woman who had done a lot of tongue tie clips. She said, “I love the look on a mother’s face when their baby latches on and nurses properly for the first time.” She had not heard of a Type Four Tongue Tie and asked for the name of my LC. She stepped out of her office and called the LC right then. I heard the quick description “Bee” gave her, and then Dr. R came right back to look at Bear’s mouth. She saw the problem right away. Relief washed over me!

Dr. R was very up front. She said she had never clipped a Type Four before and wanted to do some more research. She said she understood if I wanted to see a different ENT who had clipped them before. I appreciated her honesty and felt that it was the hallmark of a good doctor; she clearly was interested in this “new” problem but understood that she was inexperienced with it. Tired of calling ENTs and pumping, I agreed to call her back in a week to see if she felt comfortable with the surgery.

A week later I called the doctor back. She agreed to do the surgery, and two days later, Bear and I were in her office again. The underside of his tongue was swapped with a numbing agent and then he was given a Novocaine shot. He cried for a second, looked at me, and then fell asleep!

Five minutes later I held his hands, two nurses held his mouth open, and the doctor snipped his tie. He stopped crying as soon as I picked him up and gave me a petulant look. Right away I could see a difference. His tongue was higher, touching the roof of his mouth when he cried. That night, he was able to hold a pacifier in his mouth for as long as he liked, and he was much, much neater when he took his bottle.

Although he nursed in the office, it took another week, two more adjustments, and a few tongue exercises to get him to nurse. He would often have a good morning nursing but be so tired in the afternoon that he wanted a bottle. This helped me gradually wean from the pump, avoiding engorgement and another round of mastitis. I would always offer an ounce or two after a nursing session but he was soon refusing the bottle.

By the time he was three months old, he was fully breastfed. By four months, he would no longer take a bottle from anyone. Today, at nine months, he only breastfeeds and take solids; he has not had formula since he was two months old.

It was hard, hard work but I am glad I kept working at breastfeeding. For me, the end result was worth it. I know Bear and I educated several doctors in the process. They now know about a Type Four Tie and how to fix one. I also discovered why I really breastfeed and learned not to judge people when they say, “Oh, my baby couldn’t latch on.” Now I know first hand that sometimes there are hidden, hard to resolve problems, and that mothers shouldn’t be blamed for stopping because of them. It was a difficult problem to overcome, but we did it and I am thrilled to be a breastfeeding mother again!

Further Resources on Tongue Ties

About The Author: Laura

Walden Mommy: Life Behind the Red Front Door My NPN Posts

Laura is the mother to a herd of four small children, wife to her Engineer Husband, and owner of a pesky dog. She blogs about her life in the Midwest at Walden Mommy: Life Behind the Red Front Door.

10 Responses to The Long Story of a Short Tongue: Part Two

  1. Deanna

    I too have faced similiar problems with my 6 week-old son. Honestly it’s been a feeding nightmare and it’s just exasperating to the core. His posterior tongue-tie was clipped last Wednesday and his latch/sucking is still poor. We have an appointment on Monday for Cranial Sacral Therapy and will try to meet with a La Leche leader (weather permitting). It’s a tough road.

    • Laura

      Good luck with the therapy and please let us know how it goes. I remember needing to supplement in those first few days after his clipping because he would tire out. Breastfeeding was new to him and harder work than the bottle. Keep up the hard work and good luck!

  2. Jasmine

    there are no words to describe how happy i am that there are mother’s like you that will literally do all that they can to be able to nurse their babies. so often i encounter moms that think nursing is weird & can’t believe that i “do that” with my baby. stories of “oh he didn’t like it” and “well it hurt” make me think that if it was a priority to them, all problems could have been overcome. to each her own, and it’s a mother’s right to decide how she wants to feed her child, but it’s so amazing that you were able to overcome this struggle. a real role model for mamas everywhere!

    • Laura

      Thank you for your kind words. It was hard, hard work and I wouldn’t blame a mother for choosing not to EP. I felt I had to have his tie clipped for health reasons: to make it easier for him to eat, drink and talk when he was older. As I type this, we are closing in on our o ne year tounge tie clipping anniversary!

  3. Stephanie B. Cornais  

    Thanks for sharing your story. There is still so little information out there on type 4 tongue tie, for both mothers and professionals (including IBCLC’s!)

    • Laura

      I fully credit our very gifted LC for figuring out the problem and for a forum-friend for helping me out and troubleshooting via the internet. Please share his story with other professionals so we can get the word out about these atypical tongue ties!

  4. Anna

    Thank you very much for this article. My 2.5 month daughter has the same short tongue issue. So many similarities. Appears to feed well, gassy etc. I now have something to show my husband who cant quite understand it. No one has spoken to me about the possibility of surgery though, so we have been significantly supplementing with formula and EBM. I live in Australia and wonder if perhaps we are not as familiar with this condition. Anyway, thanks again. Anna

    • Laura

      Hi Anna! I am sorry to hear about all the trouble you are having nursing your baby. The type four ties are often over looked and under diagnoses, so many people have problems finding someone to help them. We ended up seeing an ENT but many other people have had luck with a dentist! Good luck!

  5. Jamelah

    I too am in the Midwest my sweet baby girl is 14 weeks old tomorrow – we have been struggling since birth and only suggestion I get is to supplement with formula which we had to do so she could gain weight it took 5 weeks for her to reach birth weight – I have insisted to our pediatrician that she struggles with a bottle as well.. Please could we get the name of the dr who did the evaluation and surgery for posterior tongue tie I’m positive my little one has this.. All the symptoms are there – fussy, arching wash at nursing time , chomping instead of sucking, my nipples feel as though they are being sawed off by a razor!! Long nursing sessions and a baby who tires easily when nursing. Low milk supply for me I must pump constantly, she has never been able to suck on a pacifier and the list goes on and on. I enjoy the closeness but am fast loosing my resolve to breast feed as my social life and hers are so affected. I would appreciate any help you may be able to offer!! Thank you!!

  6. Laura

    An ENT, dentist or LC should be able to help you find one in the area. LLL might have a list too. Good luck!

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