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Tongue Tie Exercises July 27, 2013

Many times just “clipping” a tongue tie is not enough. Babies usually begin sucking inside the womb, so even a baby who has their ties released as a newborn may need therapy to relearn.

It is best to work with an International Board Certified Lactation Consultant (IBCLC) and/or Speech Language Pathologist (SLP), because they can assess your baby’s suck and show you exercises to specific to your baby. We have seen quite a few IBCLCs and SLPs now, so the information below is compiled from them, along with a few things I have come up with on my own.

Sucking, strength and mobility exercises (to be done as much as the baby enjoys):

Insert clean finger (nail down) or Soothie pacifier into baby’s mouth. Gently pull it back out – just until you feel resistance as the baby sucks harder, trying to hold on.

Insert clean finger (nail down) into mouth, gently stroke palate, then flip over and apply gentle pressure while stroking from the back of the tongue to the front of the tongue.

Insert clean finger (pad down) and stroke along the gum line.

Either hold onto a vibrating teeth or electric toothbrush or inset finger (pad down), or insert the electric toothbrush itself and stroke all over the tongue.

Older babies and children:

Offer a variety of safe objects for the baby to mouth and lick.

Offer Popsicles, lollypops, egg beaters etc. and encourage them to lick.

Spread something sticky (peanut butter/jelly etc) on the outside of their mouth to lick off.

Play imitation (silly face) games.

Practice a variety of sounds, especially ones that require complex tongue movements (“L” has been especially helpful for my children).

The orally defensive infant/child:

Take it slow! It is not uncommon for tongue tied babies to develop oral aversion, feeding can be stressful from birth, on top of surgeries, reflux or other issues that give them unpleasant oral experiences. We need to teach them that they can enjoy using their mouth!

Some children may not let you in their mouth at all. It took me several months just to touch my daughter’s face. I started with massaging her hands and feet, and progressed fairly quickly to her legs/arms and back, however, progress slowed down after that. I started each time on her hands and tried to work my way to her neck, then the top of her head, face, near her mouth and outside of her mouth. I always stopped as soon as she looked worried. After many months she let me fingers into her mouth but did not suck and quickly gagged. I discovered that if I put something tasty on my finger (such as jelly) she was more willing to accept it, slowly I worked up to doing sucking exercises, providing a lot of encouragement along the way. I have heard of other mothers finger feeding younger babies who were not interested in the sucking exercises.

 

Quite Problematic for a “Minor” Tie (Photos) March 22, 2013

Every time I hear of “minor,” “mild” or “small” tongue ties alarm bells ring. This often means the provider is not well educated when it comes to posterior ties.

When a provider examines for tongue and lip ties they should not only look and feel in the mouth, but, should take a full history to include current and past symptoms (depending on age). It is all about function.

If it is an infant or breastfeeding child and IBCLC who is familiar with posterior tongue and lip ties is often the best resource. Sometimes it is not possible to work with an IBCLC, or it may be an older child or bottle fed infant. Some providers will offer an assessment via email. Another resource is the Tongue Tie Babies Support Group on Facebook – they will not diagnosis, but, there are many knowledgeable parents and providers that will offer insight, as well as an international list of frenectomy providers.

The photos below are a sample from my own children – there are many more presentations than the ones pictured here. Just remember, it is all about function!

Unrevised Tongue Tie  This is the “minor” tongue tie. In actuality it was severe. Notice how only the very tip and sides elevate – this is during a full cry, the very highest she could lift her tongue. Her symptoms included: Thrush (see white in edge of mouth), weight loss/poor gain, clicking and slipping off the breast while feeding, little to no milk transfer and falling asleep while feeding, choking on the bottle, reflux. My symptoms were damaged nipples, engorgement and oversupply followed by low supply.

Posterior Tie - Hidden  This photo also shows a posterior tongue tie that revised incompletely (choose your provider carefully and if you have doubts get a second opinion from someone more experienced!) Here the tongue lifts a little more, but, still not enough to properly milk the breast.

Remaining Frenelum after 1st Revision  This was taken the same day as the previous photo, often when the tongue is lifted enough, a posterior frenum will “pop” into visibility. When these photos were taken her symptoms were slow weight gain/failure to thrive, clicking and slipping of the breast reflux, and poor milk transfer, and poor coordination while feeding.

Lip  This is her lip tie, notice how little the lip lifts, she often rolled it inward while nursing and it prevented her from latching deeply.

high palate  Here is a high and narrow palate, when the tongue is restricted, babies cannot properly “spread” their palate. When the palate is high it causes additional sucking difficulty, dental problems, and is just one more sign that a tongue tie is likely present.

20120727_094314  This is a poor latch caused by tongue and lip tie. Notice that not much of the breast tissue is being drawn into the mouth, and the upper lip is rolled in. After nursing the breast would be flattened (think lipstick), whitened, and have teeth marks due to her restrictions.

johnny This is also a posterior tongue tie, my 5 year old. Notice how far the tongue can stick out, but, also take note how it turns down, and has a heart shape at the tip. He reports pain when lifting his tongue, choked and spit up (projectile) often while breastfeeding as an infant, fed constantly, and I had severe pain for more than 6 months. His tie was not found until recently…not one doctor or IBCLC we saw every looked or mentioned it. We treated ourselves for thrush for months only to have a culture done which concluded we did not have thrush at all. Thrush and tongue tie symptoms feel very similar!

johnny3  Notice here that he has to close his mouth to lift his tongue this high, you can also see the triangle shape at the base of the tongue where the floor of his mouth is being lifted as well. He complained that it hurt to do this.

johnny2  Here he is “clicking” his tongue and the posterior frenum has “popped” into visibility – very short and thick!

Links for more information:

Consquences of Untreated Ties (TongueTie.Net) 

Articles Specific to Infants and Children (Dr. Lawrence Kotlow, DDS) 

Case Studies about Tongue Ties, and Related Physical Issues (Dr. Brian Palmer, DDS)

Resources and other Parents Dealing with Ties (Tongue Tie Babies Support Group)

 

Bottle to Breast! February 9, 2013

At eight months old Naomi began losing weight again and her latch and suck at the breast declined. I offered her more and more bottles of formula and she began actively refusing the breast. By 10 months Naomi was latching every few days, and only for a few seconds. I was pumping and only getting about 1-1.5oz each time.

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Naomi had her posterior tongue tie revised for the 3rd time, and upper lip tie revised for the second time when she was 10.5 months old. She latched deeply and nursed for several minutes immediately after the procedure.

Two days after the revision I tried the Medela SNS, but, Naomi felt the tube and threw her head back refusing to latch. I tried several more times with the same result. I then tried a periodontal syringe with a 5FR tube attached and she still refused. Finally, on the third morning post revision she latched on in her sleep and I snuck the syringe in (without the tube) and squeezed some milk into her mouth.

On the fourth day I hid all artificial nipples and promised myself they would stay hidden for a minimum of 3 days, and up to a week before I reassessed.

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By the fifth day she was consistently taking the syringe, with the tube and I switched to the fastest SNS tube . . . and she took it!

sns

 

Within 2 weeks my supply increased, and within 2 months we weaned off the SNS. Naomi has since gained weight faster than she has ever consistently gained. Her transfer is still low for her age, but, we nurse all the time and we both enjoy it!

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Things that helped me get her to latch during the two months she was refusing:

Lots of skin to skin time

Bed sharing (and nursing while sleepy)

Bathing and showering together, and allowing her access to the breast during that time.

Babywearing

Allowing her access to the breast while moving (rocking chair, walking etc.)

Most importantly, providing access as much as possible, and encouraging, but, never pushing her.

 

Mama and Papa See Me Through (PTT through Baby’s eyes) November 2, 2012

Squeezed and pushed I tried so hard to rotate through. It took some time, but, finally the shape of my passage changed and I slid through into warm, expectant, hands. These hands belonged to my Grandma, who was gazing lovingly into my eyes.

I heard familiar voices, and smelled my Mama and heard her heartbeat as I was laid on her chest. I felt safe, and laid there for a long time. After a while my Mama put me near something soft and round, it smelled sweet and I tried to suckle on it . . . I did not know why, but, it seemed so natural.

After a while my stomach started to bother me – I had never felt hungry before. Inside my Mama’s womb I was constantly fed. I kept trying to suck on my mother’s warm, round, breasts, but, it was so much work for so little reward. Over the next few days I decided I preferred to sleep –  to conserve my energy.

Soon I realized if I sucked a few times milk would flood my mouth briefly. I liked that feeling and it tasted so good. I cried and cried when my Mama gave me a rubber nipple without milk instead of breastfeeding me, but, it relaxed me, and I drifted off to sleep.

My skin began to hurt, itch, and flake off . . . this had never happened before. I felt so hungry, but, I was too sleepy to cry for milk – it was too hard and painful to suck for it anyway.

One day Mama gave me a different type of rubber nipple; this one had milk in it. It was scary to drink from the bottle – I kept choking, and it was still a lot of work to suck the milk out, but, after a few days my belly felt full, and my skin felt comfortable, but, something else happened. My throat started to burn as the milk came back up, I did not want to lose that milk so I would swallow it back down and it burned again.

One day a man looked in my mouth, and then he put something hot under my tongue. It made my tongue feel funny, and Mama stopped offering so many bottles. I was happy that I could get more milk from her breasts . . . but I still felt hungry all the time, and my throat still burned. We saw another man who did something similar to my lip; I felt I could drink really well for a few days before things got worse and worse.

One day Mama started giving me bottles again after I breastfed, I felt less hungry, but some of the bottles tasted so bad, I think I heard someone call them “formula,” it made my tummy hurt, and sometimes all of it came back up my throat. One time so much came out Mama screamed!

Some time passed, Mama and Papa fought a lot and I sensed so much tension in my house. They kept using my name, and I felt it was my fault.

One day I had to stay in my car seat the whole day, we stayed at my Titi’s house far away. The next morning we had another long car ride to another doctor’s office. I had seen so many. I could not understand why.

The doctor looked in my mouth and then took me away, once again I felt something hot under my tongue. When the doctor brought me back I drank milk from Mama’s breasts. It felt easier, and did not hurt so much, though I still found it hard to coordinate sucking, swallowing and breathing. I often would forget to breathe and have to gasp for air. Feeding was still stressful.

Mama took me to a sweet lady who rubbed my head and did funny things with my body. Sometimes I did not like it, but, I felt better afterwards. It seemed like the more times she brought me there the easier it was to drink milk from Mama’s breasts and before long I was not drinking from many bottles at all.

I felt the tension in my home release, and even my tummy and throat stopped hurting for a while.

After more time passed I began feeling hungry again; my ears, tummy and throat began hurting too. I would cry for hours. I could tell something was bothering Mama, but, I did not hear her say much until she told Papa, “he thinks more frenum came forward from craniosacral therapy,” whatever that means. Mama started giving me bottles again. The bottles made my tummy feel full; I did not want to suck on Mama’s breasts anymore. It was too hard to get milk.

One day I had to ride in my car seat for a long time and went back to the doctor again. This time he put the hot thing under my tongue and my lip. When he brought me back to Mama I decided to try to suck on her breast. I found I could open my mouth wider and somehow that gave me more milk. I decided I would keep trying to suck on her breasts.

Mama would stretch and rub her fingers under my tongue and lip. I did not like the feeling of being held down and it hurt a little bit; but, I let her, because she always told me so calmly that she had to do this so I could drink easier. I trusted her.

We went to another kind woman who rubbed my head and neck and moved my body around. She talked a lot while she was doing this, and Mama asked questions. I did not understand what they were talking about, but, I think it made Mama feel happier, and I felt better too.

Another lady kept watching me eat. She talked to Mama a lot too, than she kept trying to put a tube in my mouth while I sucked on Mama’s breasts. I felt Mama was stressed and the tube felt funny so I decided not to breastfeed anymore. I was really hungry for a few days because Mama stopped giving me bottles. One day I decided I would try the tube. The tube had milk in it! After that, I decided I liked drinking from Mama’s breasts again. I liked it so much I drank from them constantly for a few days. It seemed the more I drank from them the more milk there was – this was new to me and I loved it.

Now I drink from Mama’s breasts all the time. My ears, throat, and tummy have started feeling better. I have even learned to say some words – I love the reaction I get! The tension in my house has relaxed and I can see how much Mama and Papa love each other – and love me. Things have been hard for me since the moment I tried to exit Mama’s womb, but, they are getting easier . . . and I know my Mama and Papa are loving enough to see me through whatever lies ahead.

 

I Can’t Steer a Parked Car September 11, 2012

Naomi is 9 months old. 9 months is the age Caleb was when I made peace over losing my nursing relationship with him. I could simply say, I passed my goal of 6 months, we overcame the worst of the difficulties regarding the tongue tie, things are “okay.” But, I will not settle for “okay”.

Why should I force her to compensate? Why should I put her lungs at greater risk of aspiration, why allow artificial nipples to ruin her oral development, why feed her formula and mess with her delicate little gut? Why not shoot for the best? I have waffled over this for 2 months. No more pondering or second guessing. I choose to push forward. “You can’t steer a parked car.” So I turn the key, and press the gas. My tank often runs near empty…but, I never run out.

I started domperidone for milk supply today. Tomorrow I begin pumping and Naomi has a weight check. Wednesday we will attempt exclusive breastfeeding. Friday we will check milk transfer with an IBCLC. We will continue suck training exercises and craniosacral therapy as we are able. If there is a bump in the road or we take a wrong turn, we will re-route; but, I refuse to take my foot off the gas. At this point I do not know our destination – the earth is round. There is no telling just how far we can go, so I am driving.

 This is her face after nursing, which she now calls, “nun-nun.”

 

Big Gain! August 15, 2012

Go ahead and ask me: “How did your baby suddenly gain weight so well after months of sliding down the growth charts?”

The simple  question, “why isn’t she gaining?” introduced me to the complex answer that led to our solution, and delicious FAT on Naomi’s baby thighs for the first time since birth – at 8 months old.

Here are the problems and solutions:

1) Not transferring enough milk during feeds

Adding formula to expressed milk and/or mixing formula to 24 calories (under a doctor’s direction) and “topping off” with a bottle after breastfeeding

Releasing posterior tongue tie and upper lip tie

2) Allergies causing diarrhea and reflux

Eliminating allergens from my diet (cow dairy, soy, corn, gluten)

Switching to a high calorie homemade formula with no ingredients she is allergic too (more info below)

3) Still burning more calories than she was taking in after PTT release

Craniosacral therapy to release muscle tension associated with the ties

4) Low milk supply – likely because of the ties which were not properly revised until Naomi was 5 months

Fennel tea for me (I took domperidone prior to the PTT release and craniosacral therapy)

Pumping after feeds

Weighing Naomi before and after feedings every 2 weeks to estimate supply and transfer so she is not over supplemented

Many people ask me about homemade formula. It is my recommendation that you do your own research and find (or create) a recipe that is best for you and your child. I chose goat milk because Naomi is allergic to cow milk, I chose ingredients I can afford, feel are safe, can easily obtain, and are calorie dense. I started giving it to her at 6 months in addition to breastmilk – she was old enough to eat solid food, so it really is not much different, other than I give it to her in a bottle! I started making the formula with pasteurized goat milk and switched to raw because I researched and felt that was a healthier decision for my baby.

I am just a mom trying to help her baby – everyone should do their own research before trying any homemade formula recipe. I also recommend using another mother’s breastmilk whenever possible, we could not because of Naomi’s many food sensitivities.

 Naomi, 8 months, 15 pounds – up 7 lbs 1 oz from her lowest weight – the awesome part being that most of that growth has been in the past month! Notice the fat around her elbows, cheeks, and thighs – she had never had any extra fat! So exciting and beautiful! She is crawling around on the playground here – after her revision and craniosacral therapy she has been excelling with her motor skills as well!

 Proud moment for us both!

 

Everything Happens for a Reason (PTT #3) July 16, 2012

“Everything happens for a reason,” I have repeated this to myself like a broken record for 7 months; and when I was sobbing too deeply, my mother said it for me.

“Just hold your baby skin to skin, that will encourage her to nurse” – expert advice from a hospital nurse, and Naomi did nurse – for a few minutes before falling asleep, and so the cycle repeated itself. “Why is my baby rooting for the breast and not feeding?” I asked the pediatrician, and was assured everything was fine, but, in my spirit I knew it was not.

“She is still losing weight, maybe you are forgetting to feed her,” the pediatrician advised at Naomi’s two week weight check.

The lactation consultant confirmed Naomi was only transferring 20ml of breastmilk – after switching sides 4 times and performing breast compressions . . . and a “perfect latch,” which left my nipples flattened, broken, and bleeding.  “Your baby has become ‘lazy’ because of your ‘oversupply’ and does not want to nurse past the letdown,” I was told.

“Just offer a two ounce bottle after breastfeeding,” our pediatrician advised when Naomi was 3 weeks old and still losing weight, despite nursing her non-stop around the clock. Fearing rejection I sterilized the SNS and offered her expressed milk through a tube, taped to my breast – she never took more than half an ounce and I was certain things were improving.

“She didn’t lose any more weight, that is an improvement, but, the SNS is not working – you need to use a bottle” I was told at the 4 week check up. My stomach dropped and vision spun. This was not happening. I had researched for months, all I wanted was a normal breastfeeding experience . . . I just wanted to feed my baby in peace.

“Please help me, my baby can’t breastfeed and she chokes on the bottle,” I pleaded with the nurse who admittedly did not have much advice. My new routine became breastfeed, bottle feed breastfeed. Feedings were lasting 2 hours, 45 minutes of that time was Naomi attempting to drink 2 ounces before she was out of energy – more often than not she could not finish a bottle.

“There is this other kind of tongue tie that is really hard to diagnose, a posterior tongue tie,” wrote a trusted la leche league leader in response to my saga on the LLL Facebook Group.  I googled “posterior tongue tie,” and realized we had literally every sign and symptom except reflux (which showed up later, once she had enough nourishment to stay awake). I read stories of the “simple revision” being done and babies instantly latching and breastfeeding perfectly. My strength and hope for breastfeeding returned. I became a mama bear. I was angry and determined. I wanted to set things right for my baby and for as many other mamas and babies as I could.

I started taking domperidone and changed feedings to breast, bottle, pump. I prayed for my milk supply to increase – it doubled overnight!

The first ENT recognized an upper lip tie, but, not a tongue tie. The second ENT performed a tongue tie revision but claimed the lip tie would not affect breastfeeding. Naomi was able to transfer some milk. We followed up with speech pathologists who suggested suck training techniques, we began meds for reflux, Naomi was transferring some milk, my nipples healed. I eliminated dairy and soy from diet, we fed her high calorie formula in addition to breastmilk, and still her weight gain was painfully slow and reflux got worse by the day. Where was my quick fix?

We had the lip tie revised and still there was little improvement. I had health issues and took multiple medications and spent time in the hospital with very little pumping and my supply plummeted.

I joined the Tongue Tie Babies Support group on Facebook, IBCLCs and other group members were convinced there was unrevised tongue tie. I emailed pictures to Dr. Kotlow, and visited a local lactation consultant who all agreed Naomi’s tongue was still restricted.

Feeling crazier by the hour, I took Naomi to craniosacral therapy, where I watched her tongue change shape in front of my eyes. 2 days later, and several states away, I opened a door to an office which had a merry go round and video games in the waiting area along with breastfeeding posters. We were escorted to a private room where I filled out the most complete questionnaire yet, again my world spun as a man entered the room with a smile and said, “Hi, I’m Dr. Kotlow,” I wanted to cry, but, held fast. Before long he had taken Naomi and returned her, “the other doctor only took the anterior tie, now there is nothing left to take,” stated Dr. Kotlow. She had been seen by the best of the best. I felt such a peace wash over me. A few minutes after we left Dr. Kotlow called me, “I just wanted to tell you that you are not crazy and I really think things will improve.” I have been so amazed by people like Dr. Kotlow, and others who volunteer hours of their time to help people – I can only hope and pray I am able pay some of that forward one day.

Still, the road had not ended. I felt a surge of emotions. I was angry, cheated, defeated. I felt guilty for my feelings, because things had improved so much. I hated the people who had taken their babies for revision and they nursed perfectly afterwards. I had yet to understand that the complexity was our blessing.

“Gut healing” is the phrase I kept hearing over and over. I resisted until I was told, “gluten is like cocaine,” an hour later I was gluten free, a few weeks later corn free, the next week making Naomi’s formula from goat milk and other ingredients that I know she can safely consume.

I switched to stretching the revision site with Naomi’s head in my lap and feet pointing away, and it healed quickly and completely.

With more craniosacral therapy she was able to drink 3.8 ounces from my breasts last week – a milestone for both of us.

“Everything happens for a reason.” My baby is beautiful, happy, and growing. I have clarity of mind, and a passion to learn everything I can about the challenging topics of lactation so that one day I can pay it forward. I feel I am caring for my body and my family like never before. Everything is coming together at once, I am a stay at home mom for the first time, I am home schooling, I am breastfeeding, I am preparing healthy foods for my family. All these things fit together perfectly, God always has a plan . . . we simply have to trust and persevere. The phrase that kept me going was to help others – this journey has helped no one more than me.