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The Great Debate: Tongue Tie Aftercare May 7, 2014

“My baby screams so hard when I perform stretches, are they really necessary?”

 

“My doctor/dentist/IBCLC told me that I can manually rip open the revision site after it has reattached, but, that feels barbaric.”

 

“My baby seems to have an oral aversion . . . at least to my fingers.”

 

“My IBCLC/doctor/dentist said oral aversion is worth the risk of aggressive aftercare.”

 

“My toddler is so strong, I can’t seem to get under the tongue without being bitten.”

 

“I was told my baby’s tongue/lip tie reattached because I didn’t stretch aggressively enough (or did not stretch at all).”

 

“I stretched aggressively and the ties still reattached.”

 

“I did not stretch and the ties did not reattach.”

 

To be perfectly honest these sorts of comments make me angry. I am not angry at the parents, but, angry at the professionals that keep insisting aggressive aftercare is the only way to prevent reattachment, when we are not even sure it prevents it at all!

 

To back up briefly, not even professionals seem to agree one what reattachment is when it comes to tongue and lip ties, or when it becomes problematic. The thoughts seem to range from any frenulum with any symptoms mean problematic reattachment, to some frenulum and reattachment is normal and even some remaining symptoms are normal. It is important to realize that not all breastfeeding problems are caused by tongue tie and that even if a particular baby’s problems are all tie related, it can still take a long time for the symptoms to improve after release.

 

I am going to share my story, with names of professionals intentionally left out, and conclude with some links to aftercare articles written by professionals that I trust understand the emotional and physical trauma aggressive aftercare can cause.

 

I have two children that have had their ties released. My son, C, (3 years old at the time) and daughter, N, (several releases during her first year).

 

I started out stretching C’s revision site aggressively, but, he was strong and fought hard so I quickly reduced the frequency of stretches and performed them more and more gently until I stopped. His tongue healed perfectly and 18 months later he has no symptoms.

 

N has had multiple “revisions.” Her tongue tie was first released at 7 weeks old and I used gentle “sweeps” under her tongue (no stretching or bleeding and she hardly flinched). Her tongue healed without any reattachment.

 

At 10 weeks old N’s lip was released, I did not touch the wound, it reattached, though it was closer to a class 3 than class 4.

 

When N was 5 months it was determined she had remaining frenulum (not reattachment!) under her tongue and remaining symptoms so it was released again. I did slightly former stretches. At this point I had joined some tongue tie support groups online and had connected with some professionals (one in particular) that put significant emphasis on stretching to avoid “reattachment.” When I saw frenulum under N’s tongue again I panicked and broke it open (looking back I am not even sure if it was true reattachment). I called the dentist who released the tie and he suggested not stretching, but, using a gentle massage. My understanding of what he said that reopening the wound would slow down the healing process and increase the risk of reattachment. I am not sure he still advises that or maybe I misunderstood him, but, when I switched to the gentle massage her revision site healed within 2 weeks without reattachment. I did not consider at that time that the gentle massage may have been more beneficial in preventing reattachment than aggressive stretching.

 

Over the next few months I followed the professional that was placing major influence on aggressive stretching to prevent “reattachment” and insisting it did not cause oral aversion and any upset or pain to the baby was worth it. Much to my shame I followed and participated in the person’s advocacy of aggressive aftercare. I became literally blind to the trauma it was causing parents and children and followed this person like a cult.

 

N still had many symptoms at 10 months so we returned to the dentist, this time he released the lip and the tongue (which had not reattached, but, he released deeper). I had become so consumed by the paranoia of reattachment that I was terrified of it happening to my baby and willing to do anything to prevent it. I blindly followed the advice of a professional whom I trusted . . . ignoring some of the blogs which had begun to pop up warning against aggressive aftercare.

 

The professional watched me and instructed me stretch/rub the revision site to the point that I removed more tissue from the lip frenulum than was revised. I continued to stretch, rub, and break up tissue multiple times a day for 14 weeks. N was so traumatized she would cry as soon as I begun preparing to stretch her. Symptoms had briefly improved but began to get worse and worse and it seemed the more aggressively I stretched the more it reattached.

 

I stopped stretching and rubbing at 14 weeks, within about 2 weeks her tongue and lip had healed. Her lip did reattach some (but even less far down the gum line) and her tongue did not reattach at all. All of her symptoms improved significantly within the first few weeks after I stopped stretching and continue to improve 18 months later.

 

N must have broken her lip frenulum on her own a few months later because one day I noticed it was completely gone . . . since I had no idea it had even ripped I had not touched it . . . yet it was perfectly healed.

 

The worst part is that N still has not forgotten, she still does not fully trust fingers near her mouth, or being put in “stretching position.” I no longer believe stretches prevent reattachment, but, even if I thought they did, I feel it would be less traumatic to have more revisions than endure aggressive aftercare.

 

How to avoid oral aversion from aftercare: Tongue Tie – Gentleness and Compassion for the Baby Part 1 and Tongue Tie – Gentleness and Compassion for the Baby Part 2

 

The danger of and lack of evidence for stretching: What Is Appropriate Aftercare Following Tongue Tie Treatment? PART 1 and What Is Appropriate Aftercare Following Tongue Tie Treatment? PART 2

 

***I will have no problem approving comments from the apposing point of view, but, personal attacks against me, especially without real contact information of the person commenting will not be approved.***

 

Why I am Still Breastfeeding February 3, 2014

Naomi recently had her 24 month check-up. I mentioned that she was still breastfeeding and the pediatrician laughed – I did not get the feeling it was in mockery, more in shock.

 

Some know it has been incredibly challenging for us – much more so than the struggles most endure those first few weeks or months (read “Sleepless Nights” or other blog entries for some background). But, I did not stick it out to be a martyr, in fact, I am not even sure why I kept at it. It was simply putting one foot in front of the other, one feeding after the next. It was knowing that she would benefit greatly from the nutrition, bond and oral development. I thought about quitting every feeding, but, I knew it would be harder to stop than to go. It is like driving half way to your destination before you realize you left your wallet at home . . . you may as well keep going.

 

I did not enjoy breastfeeding much, in fact my baby has probably had more formula than breastmilk in her life. Every solution offered ended in disappointment. Sure, there was some improvement with the various suggestions, but, there was no magic bullet for us – no instant fix.

 

I have been so angry some days I have literally shook from head to toe for hours. It is not fair. I researched and educated myself and as many people told me along the way, “did all the right things.” I see a thin baby and my heart stops beating and my blood drains to my feet. Nothing is worse than finding out after several weeks that your child was starving – thinking about that hurts.

 

However, I am not writing this to rant and complain. I am writing to encourage. Any breastfeeding relationship is beautiful. Ours is not perfect, never was and probably never will be…but, it is ours…and we love it. Sure we have hated feedings and even now there are feedings I dread the idea of her latching onto me, but, when I step back and look at the big picture it is so worth it.

 

I also want to encourage those struggling with poor  milk transfer and/or low supply that even if it does not improve at all…ever, that it can be very worth sticking with it. I have found it so much less stressful since my daughter turned one and I did not feel I had to be her primary source of nutrition any longer. We breastfeed with a cup of water next to us, she happily suckles at the breast, taking water breaks. It is not conventional, certainly looks different than most, but, it works for us.

 

So to all of you mothers out there who are struggling for that perfect breastfeeding relationship, it is okay to keep trying to improve things, but, please recognize that you are doing an amazing job. You may be breastfeeding exclusively, pumping exclusively, breastfeeding with bottle top ups, breastfeeding with an SNS, any combination of the above or something else…and it may even change from day to day or feeding to feeding and that is OKAY! It is YOUR breastfeeding relationship…so beautiful and amazing.

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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.

 

Sleepless Nights May 11, 2013

Eleven months of sleepless nights . . . that’s what it took for me to realize the dark pit I was really in. Nobody really understands until they have been through it, and for that, I will never fault them.

Thousands of tears shed, and hundreds of hurtful words shouted at the ones I love the most. Hour upon hour of research because everyone else had long since given up on us, my mind, body, and soul were consumed . . . but, I pushed through because somebody had to and my baby was too little.

Too little . . . failure to thrive. I felt I had failed my child by starving her and that my milk was not good enough or maybe they were right and I wasn’t feeding her often enough. Because nursing for 30 minutes, bottle feeding for 45 and pumping for 30, every 3 hours is not enough.

It shook me and broke me and I swore I was crazy as I took her from one healthcare provider to the next pleading for answers . . . to which they had none. My intuition told me that something was wrong, very wrong, but, nobody would listen. “Just add more calories,” was the answer over and over again . . . but, nobody took the time to consider why she needed so many.

Everyone says it is a “simple clip,” for tongue ties, but, there is nothing simple about it . . . at least not for us. Many refuse to revise, and others do so incorrectly. Nothing is worse than realizing the doctor you trusted performed a procedure incorrectly  . . . it feels even worse when deep down inside you knew you should have gone to someone more experienced.

It was not easy when we reduced our grocery budget and postponed the rent because we had to travel through several states and pay out of pocket to get to a healthcare provider who was experienced enough to help our child . . . at least I hoped.

Most parents think they lack sleep . . . but, very few have spent the better part of every night for 11 months in a rocking chair with a screaming baby, listening to the wicked air trapped inside of her little body.

People do not realize how much it hurts a parent who gave everything she had to breastfeed to hear another parent say, “I tried so hard and I just couldn’t.” I just cannot be empathetic to that after pumping around the clock for months, latching with cracked and bleeding nipples, screaming in a pillow while someone else held the baby to my breasts for fear my pain would cause me to hurt her, attempting over and over to latch my baby, fighting with supplemental nursers and eating galactogogs like candy. I am pretty sure everyone can breastfeed if they try hard enough, though I certainly understand those who choose not to . . . especially now.

11 months, a bruised hand from punching a wall in frustration . . . and that night my baby slept . . . and I slept. It was about 5 weeks after her 4th frenectomy (it certainly was not a “simple clip” for us). Suddenly my world began to change . . . to brighten. Within a few months I was finally able to enjoy and care for my family instead of spending every waking moment simply trying to survive.

Naomi is 17 months, she has come so far . . . and has some left to go. We have both recently let out a cry . . . a deep and heartfelt release of all of tension from her first year of life. It was the most stressful of mine thus far; I can only imagine what it must have been like to her as her very introduction to the world.

Now people’s eyes glaze over as soon as I mention “tongue tie,” because until one has survived it and lived to tell the story, they just have no idea the impact it really has. A tiny little defect of the mouth . . . that can easily turn life upside down. But, we survived and lived, and for that reason I tell me story and I know the ones that listen and understand are the only ones who need to hear it.

407912_10150510171353105_1837601309_n 7 weeks old, crossing her birth weight the day of her first frenectomy (which was incomplete), two months later she was labeled “failure to thrive” dropping from approximately the 75% to the 5% and then below the charts. If only it were a “simple clip” that anyone could do and do correctly.

75040_10151270709653105_2003651271_n She cried so much, and was so often sick with ear infections etc that first year, so painful to watch your baby suffer . . . thankfully she is quite healthy now.

417946_10151438877233105_769283572_n Taken a few days ago . . . 17 months. She’s still tiny, but, so healthy and loves her mommy milk. Even though we still are working on some suck training among other things, it is amazing that her reflux and aerophagia are almost non existent and she is such a happy little toddler! This is the reason I seem so obsessed . . . I want everyone to survive . . . and live to tell the story. The more of us who do, the greater chance people will take notice and hopefully more healthcare providers will become aware and babies will be treated sooner and correctly.

 

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.

 

“Cornless” Bread January 25, 2013

Filed under: Recipes — birthboobsandbabes @ 5:27 pm
Tags: , , ,

Ingredients:

2 cups sorghum flour

½ cup rice flour

1 teaspoon salt

1 teaspoon gluten free baking powder

1 tablespoon honey

1 cup water, milk, or alternate milk

2/3 cup butter, margarine or coconut oil (in solid form)

Method:

Preheat oven to 425

Mix dry ingredients

Add wet ingredients and cut together with fork (dough is smooth, wet, but, can be formed into balls)

Pour into greased baking pan, muffin tins, or form into balls and place on cookie sheet

Cook until edges are golden brown (about 15 minutes)

Try serving with coconut oil and honey, alongside Quinoa Sweet Potato Chili

 

 
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