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Healing a Tongue Tie

Rehabilitation from tongue tie can take time. For many, true healing requires a team of people to support them at a physical, spiritual and relational level.

The Trauma

For some, one of the hardest things to heal from a tongue tie is the trauma. Between my son’s traumatic birth, the far reaching negative affects of the tongue tie on our life including his hospitalization in the PICU at 7 days of age, and all of the food reactions due to the medical damage and the resulting limited diet that my son and I have been on now for over a year I have had a pretty traumatic introduction to motherhood (I am still pumping breastmilk for him so my diet has been deeply affected as well). At first I didn’t recognize the trauma for what it was but have since been able to identify the trauma as well as some of the triggers. When my son first advanced past gagging on contact with a spoon and started gagging with food in his mouth during occupational therapy I would sometimes have to leave the room because my heart would begin to race and the fear and the panic felt like a wave hitting me out of nowhere. This was in a safe environment under the care of a therapist that helps with feeding and gagging all of the time. This is trauma. Mournful tears welling up uncontrollably just from driving by the hospital where Caleb was born a few weeks before his first birthday is trauma. My son’s first birthday was a particularly hard trigger for me because it is a natural time of reflection on everything that you and your baby experienced together during their first year and the trauma from everything that was taken from us by misguided medical and nutritional care came to head in the weeks leading up to his birthday. I have joked in passing with my son’s occupational therapist that I needed a therapist too…and I actually am getting ready to go visit a Christian counselor to help me even further as I pursue complete healing and rehabilitation in the Lord. I am really thankful that Dr. Ghaheri, an ENT that specializes in tongue tie, speaks to the emotional impact that tongue tie can have on both mothers and babies.

“Mom has an inherent instinct to nourish her child, and a disruption in that desire can have profound psychological impacts.” Dr. Bobby Ghaheri (1)

I can attest to this statement one hundred percent, not only in the context of tongue tie inhibiting the ability to breastfeed but the detrimental affect it has had on my ability to feed my son in general. Our problems transferred from the breast to the bottle and then to solids not just with gagging but picky eating and texture aversions as well. While we have a lot to be thankful for and God has been so good to us, this struggle to do the most basic thing: to nourish my son, certainly has taken a toll on me as a person and on the quality of life that our family experiences. Something as simple as sharing our regular meals together as a family has become a mountain. Praise God that we can say to that mountain move and it will move…and believe me, I am telling that mountain MOVE! in Jesus name and I know it will!

I am supposed to be able to instinctually nourish and care for my baby with my body starting in utero and then at birth with breastmilk and tongue tie has the capacity to attack a mom in this arena (remember not all tongue tied babies have trouble nursing). When a mother is attacked in this way so is her baby, at their most vulnerable time in life and at their most basic instinct at birth, which is to suckle at their mother’s breast for nourishment, as Dr. Ghaheri valiantly points out for infants:

 “I maintain that babies who have difficulty with breastfeeding are actively in distress, similar to the abandoned baby. A basic human function (like parental proximity during sleep OR breastfeeding easily) becomes disrupted, and cortisol levels can rise…It’s time that medical professionals start to look at breastfeeding as an important developmental process rather than a stair step to getting a baby to grow physically…We need to focus on the neurologic and psychiatric well being of infants in addition to their moms. Our current system is failing the dyad from the emotional aspect, and we need to examine what happens as a result of that failure.” Dr. Ghaheri (1)

Taking Off the Trauma

Earlier this year God revealed to me that part of my continued feeding struggle with Caleb was indeed linked to trauma. He showed me that Caleb had a mask of trauma around his mouth and face. I asked God what I should do. He told me “Take it off”. God’s power can do that and He is leading me in the charge to stand against trauma in the name of Jesus and in defense of my son’s well being. A weighty thing about being a mother or a father is that God has given us spiritual authority over our children and with the Holy Spirit residing in me I can be led by God to bless my child and be given power and authority to remove things like trauma from my baby’s face, from his mouth, from his mind and from his heart. Praise the Lord, my GOD is BIGGER.

I also praise the Lord with all my heart that He has provided for Caleb a team of people that respect me, respect my intuition and decisions for my son, and who take tongue tie seriously. As I mentioned in my last two posts, we went through a lot of medical professionals before discovering the tie and while many were truly kind and caring some of them were very degrading. What makes matters worse for many tongue tie mothers is that they face this kind of degradation not only in the doctor’s office but away from it as well, even from people they should be able to trust at their most vulnerable times. I have found that being around people that act from a place of misunderstanding and lack of empathy compounds the trauma I experience and increases the curve for healing. I noticed a few months back that when I leave my son’s Occupational Therapy session that I feel uplifted, positive and happier because just talking to his therapist each week reminds me that I am not alone, she sees what I see. She is so valuable not only for my son’s physical rehabilitation but also for my emotional healing. Surrounding yourself with therapists, medical professionals and people in general that are of the same mind helps to heal trauma. I also thank God for the godly friends that He has given me, friends that love me and who have not dismissed me or my experiences, who have been there for me and even those that God has been so kind to provide that can relate because of their similar experiences. Praise God.

Physical Healing

Healing of course must be supported physically as well. That is where our “dream team” shines. Through both the first and second frenectomy Caleb’s improvements have been aided along by his valuable team of medical professionals that God has assembled for my precious little one. Having an experienced release provider in our same city was a Godsend as well as my son’s physical therapist, occupational therapist (who also is his cranial sacral therapist), and his chiropractor all of whom have helped Caleb to physically be set free from tongue tie. I also thank the Lord for the primary care doctor God provided for Caleb who not only takes his gut health very seriously but who also encouraged me to face my fears and get Caleb’s tongue tie revised when I was having doubts.

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We visited Caleb’s holistic dentist recently for his regular check up and she got really serious when we were talking about Caleb’s occupational therapy. She told me that Caleb’s occupational therapist had changed his life for the better in ways we can’t even begin to imagine and that she is having to regularly work with adults who did not get such early intervention and have suffered a lot of the consequences of an untreated tongue tie, untreated tongue thrust, sleep apnea, etc. I truly agree with Caleb’s dentist. Caleb’s occupational therapist has dedicated herself to the hard work of addressing his ultra-sensitive gag reflexes, his food trauma, his low facial muscle tone, his highly uncoordinated suck-swallow-breathe pattern, tongue thrust and more through occupational and cranial sacral therapy techniques which have been a life-changing blessing.

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Caleb with his Christian chiropractor. 

Caleb didn’t roll until 8 months, just after his frenum was first lasered which included multiple chiropractor visits. He also began climbing the stairs within 24 hours of his first or second chiropractic visit. As mentioned in past posts Caleb felt like a loose noodle immediately after his first frenectomy because of the tightness the restricted oral tissues caused in his body. The tongue muscles stretch surprisingly far into the neck, and tongue tie has a surprising affect on the body via fascia. These muscle and fascia tensions pull on bones and muscles in ways that contribute to imbalance. I do believe that the combination of a frenectomy, physical therapy and chiropractic adjustments are what helped Caleb finally roll at 8 months. He didn’t stay on the ground much longer after that though ’cause he also started walking just a month or so later at an early 9 months 3 weeks! Go Caleb!

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God knew that Caleb needed physical therapy early on and he provided this therapist in Caleb’s life through a special connection. The early intervention has made a huge difference in the quality of Caleb’s life. One of the very first interventions was the introduction of a Nuk pacifier to help him strengthen his facial muscles (Caleb was identified as having low facial muscle tone by both his PT and OT). Caleb could not use a soothie because it so easily fell out of his mouth and if he did manage to keep it in he would swallow so much air from using it that he would scream and scream. The Nuk also helped shape his palate which was identified as being high-arched by the lactation consultant very early-on. Since his tongue had not been in proper contact with his palate in utero the palate formed wrong and the Nuk was able to do what Caleb’s tongue couldn’t do, make full contact. When we finally made it to the release dentist just shy of 8 months he praised the fact that we had been using the Nuk because of it’s help to the palate formation. A person’s palate continues to grow and develop through toddlerhood, a tongue is supposed to play the most vital part in shaping it correctly, that is why so many kids and adults that have tongue tie also have sleep-disordered breathing (apnea) and/or nasal airways. Many of these kids and adults end up having to get nasal surgeries to try to open airways and reduce sinus infections, adenoids removed, use of a CPAP machine at night and more. Caleb’s physical therapist also addressed his torticollis at a very early age and supported the dentist’s frenectomy by supporting proper positioning of the jaw and helping to both address the tone of the tongue base as well as release the tight base of his posterior tongue. The physical therapists also spend a lot of time working on Caleb’s hips because just like “what you get at the lips you get at the hips” is applicable during birth it is true for babies while eating as well. A tight mouth and a tight pelvis go hand in hand. Releasing the pelvis helps release the mouth. Vestibular insecurity was something else that both Caleb’s PT and OT identified and have worked on with him using various swings and physical maneuvers to strengthen him in this area since he was a late roller and also experienced high cortisol levels and fight or flight throughout infancy due to the tongue tie and invasive medical treatments which resulted in traumatic food reactions on top of the choking and gagging etc. that he already experienced from the ties. There is a lot more that both Caleb’s occupational and physical therapists have accomplished for Caleb through early intervention, more than I will ever know I am sure. As one of my son’s physical therapists puts it “the baby’s mouth is the first place a child learns motor skills, and sensory skills. If this is compromised due to positioning problems or timing, or strength problems it can have an impact on further development” (2).

And the Spiritual: Ka-POW! Take that Tongue Tie.

In addition to a team of medical professionals that take me, my son and his tongue tie seriously God also provided for Caleb and I a prayer team that I could turn to for help even when I felt I couldn’t turn to anyone else. I have been at the precipice of hopelessness in our medical or feeding situation, I email this team and within 24 hours, boom God moves. I can never thank God enough for them or their prayers. The prayers from this anointed team have been critically important to Caleb’s healing and victory over all that the enemy has thrown at him already in his first 21 months (Caleb’s guardian angel sure hasn’t been bored, I can say that for sure!). From God healing Caleb’s oxygen saturation issues before things got even more invasive to Him giving one of the member’s a vision of Caleb with Jesus standing over him with His hand on Caleb’s chest, protecting his oxygen and airways before the healing…I should mention I was praying specifically for his oxygen that morning and I hadn’t talked to this member since before Caleb was born and that afternoon she gets a vision and emails me. God is amazing. God has given these prayer team members words of command from God, words of encouragement, all very timely in miraculous ways. I am in complete awe still at these experiences, humbled and so thankful.

Jesus Heals a Tongue Tie

While Jesus may not have healed Caleb’s tongue tie in the same manner that he did for the man in the gospel of Mark…I can truly say Jesus has healed my son’s tongue tie. If it were not for Him I would never have known Caleb was tongue tied to begin with! If it wasn’t for Him I would not have won the Owlet oxygen monitor on Instagram right before Caleb was born, if it was not for him…the list goes on and on (See my post Dayenu for more of the great things God has done for Caleb). The Holy Spirit victoriously led me to find out about a generational birth defect that has gone undetected for almost one hundred years on my mother’s side (See my post Great and Hidden Things). I just thank and Praise the Lord everyday that He is has been there with me through it all, encouraging me, sustaining me and guiding Caleb and I up out of the pit. He was there every time Caleb’s medical grade oxygen alarm went off in the middle of the night, He was there as Caleb continued to not sleep day after day after week and He alone understands the severity of sleep deprivation I was facing as I began to cry out for help only to be misunderstood by multiple people. He was there every time Caleb choked, gagged, or projectile vomited and He is the Cleft in the Rock Who loves me more than life itself. I hide myself in Him. I hide myself in His love for me and in His love for others. He will contend with those that contend with me and HE will save my children. In Jesus’ name, so be it.

“And again, departing from the coasts of Tyre and Sidon, he came unto the sea of Galilee, through the midst of the coasts of Decapolis. And they bring unto him one that was deaf, and had an impediment in his speech; and they beseech him to put his hand upon him. And he took him aside from the multitude, and put his fingers into his ears, and he spit, and touched his tongue; And looking up to heaven, he sighed, and saith unto him, Ephphatha, that is, Be opened. And straightway his ears were opened, and the string of his tongue was loosed, and he spake plain.” Mark 7:31-35

Blessed be the name of the LORD.



Resources:
1. BREASTFEEDING PROBLEMS CAN AFFECT THE EMOTIONAL HEALTH OF MOM AND BABY
https://www.drghaheri.com/blog/2014/11/14/breastfeeding-problems-can-affect-the-emotional-health-of-mom-and-baby-1

2. Considering Breastfeeding/Early Infant Feeding a Developmental Milestone by Karen Adams

3. Tongue-Tied: How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More by Dr. Richard Baxter
https://www.amazon.com/Tongue-Tied-String-Impacts-Nursing-Feeding/dp/1732508208

4. When Did It Become OK to Stop Listening to Mothers?
https://www.facebook.com/DrGhaheriMD/posts/when-did-it-become-ok-to-stop-listening-to-mothersan-integral-part-of-any-patien/923606461134064/

5. BREASTFEEDING DIFFICULTY AND FAMILY SUPPORT
https://www.drghaheri.com/blog/2014/2/10/breastfeeding-difficulty-and-family-support

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Great and Hidden Things

I desire only for compassion, love and grace toward every medical professional we have worked with. They were each trying their best for Caleb I hope and I do not want even a hint of bitterness, slander, or unforgiveness to be in my heart or words.

The Generations

In 1936 a baby girl was born in Illinois. Baby thankfully was able to breastfeed because unfortunately for her three siblings mother’s milk was deemed to be “poisonous”.

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Baby bottle from the 1930s. (1)

In 1959 the baby girl from Illinois gave birth to her firstborn in Oklahoma, also a girl. She cried continuously and just wouldn’t sleep. Extreme sleep deprivation set in as baby girl began to starve and finally the doctor discovered that mom didn’t have the milk for baby girl to nurse. Since mother had issues with milk production (her 5 following children were put on formula straightaway) no further investigation was made to see if there were any other underlying factors contributing to the infant’s inability to thrive on the breast.

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“By 1950 over half of all babies in the U.S. were on evaporated milk”…! (2)

By the 1940s formula companies had successfully influenced pediatricians to recommend their products through direct advertising (3). The widespread decline in breastfeeding culminated with breastfeeding commonly being considered unclean in the 1950s and ’60s. In 1959 formula companies began providing formula to hospitals and pediatricians as part of their marketing strategy in order to gain endorsement. (2After taking a hit from organized efforts to save breastfeeding (such as the Nestlé boycott of 1977), formula companies began directly advertising to the public in 1988. (2,3)

In 1986 the baby girl from Oklahoma had grown and gave birth to her firstborn in New Mexico. This baby girl was able to breastfeed, but she screamed…a LOT. Colic nearly drove her parents mad for 9 grueling months, the entirety of her breastfed experience. When babysat she would refuse to eat even if it were an entire day, screaming and starving herself until mom got back. With solids she would eat and then vomit over and over. This little one had tongue thrust and into adulthood she frequently swallowed water “down the wrong tube” resulting in coughing fits as a result. Worst of all her husband had to frantically do the Heimlich on her during her third trimester because her swallowing issues caused her to start choking on a piece of steak. Thankfully her baby had already flipped during this very scary experience and even more thankfully the Heimlich maneuver worked!

Between the 1980s and 2015 babies continued to be born with everything from needing formula supplementation to help with weight, to colic, to slow eating, gaps between the two top teeth as toddlers, food pickiness, recurring ear infections and ergo recurring antibiotics, ear tubes, speech therapy needs, anxiety, mouth breathing at night, and plenty of orthodontic needs.

Then in 2016 a baby boy was born. He had had jaundice and barely avoided supplementation even with feeding every 2 hours. He was sent home with an SNS by labor and delivery nurses because of the difficulty mom and baby were presenting with nursing. He also presented with low oxygen saturation which landed him in the PICU at just a week old. After 2 rounds of antibiotics this full-term baby was diagnosed with “apnea of prematurity”. He quickly fell asleep on the breast and off the breast his sleeping deteriorated to only a matter of minutes, if he didn’t wake right upon being put down. His mother was sent to wound care by a pediatrician for her torn up breast and was instructed to dress her wounds between feedings…except baby would not even sleep long enough for mom to eat or even go to the bathroom! Mom also had chronic plugged ducts and experienced mastitis twice. Mom did find that lying on her back helped with feedings. In addition to the physical trauma on one breast the other side for mom was always creased after feedings. Baby started having watery green stools in addition to periodic projectile vomiting. Extreme sleep deprivation in both mom and baby began to set in and mom began to become unemotional toward her own baby as he kept on crying and not sleeping. Mom resorted to rocking him for hours on the birth ball. Once asleep he would roll to his side scratching and sucking at the walls of his bassinet. Baby grew animalistic during skin to skin, scratching and grasping at the breast. Finally mom realized that what she was going through was not simply the trenches of new motherhood but rather a form of oppression. The multiple doctor visits already had yielded no help and so mom cried out to God for their deliverance. God helped mom figure out that her baby was cutting off his milk supply by pinching her nipple shut (chomping vs sucking) and to get him enough milk as well as to heal her physical trauma mom stopped nursing altogether at 6 weeks. When she started pumping mom barely produced anything and had to supplement in order to keep up with her baby’s hunger (mom’s low supply gave way to an ample supply with regular pumping). With a satiated tummy baby finally started sleeping but he would choke and audibly struggle to breathe all the while. He also “chirped” in his sleep and even snored and whistled sometimes. The bottle feeding honeymoon was short lived because of huge burps, prolonged screaming, excessive leaking milk out of his mouth and the continued projectile vomiting along with choking and gagging. Baby was diagnosed with a “high arched palate” and put in therapy for feeding. His oxygen, sleeping and feeding problems continued. At around 2 1/2 months mom did find the oxygen improved drastically if he was laid on his tummy, however because of SIDS risk a pediatrician advised she continue to lay him on his back even though his airways were struggling to remain open in this position. Baby was diagnosed with silent reflux which resulted in pediatricians advising for his mattress and changing table to be elevated on one side and he was put on omeprazole. He even received a referral for a medical sleeping wedge. Solids went from exciting to gagging, vomiting and aversions to the spoon or food.

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This special needs bottle was the only bottle Caleb could thrive with, otherwise a dish towel had to be wrapped around his neck to soak up the milk that leaked from his mouth and he would scream for hours. God provided these at a pharmacy. They made a mistake and made me pick-up instead of deliver his first refill of oxygen monitoring supplies and viola there was a basket of these bottles ON CLEARANCE! Praise the Lord.

After a series of swallow-study x-rays, upper gi x-rays, a “fluff-to-make-mom-feel-better- x-ray” and a birth x-ray mom really wanted to try to avoid anymore invasive diagnostics…not to mention all the antibiotics, rx caffeine and omeprazole (a proton pump inhibitor) baby had been put on. God had already protected Caleb by providentially securing his medical grade oxygen monitor which had alerted mom to his choking in his sleep (the post Caleb Gabriel tells how this started with winning an Instagram contest) and from being put under to have a camera stuck down his throat by healing his 02 issues and showing mom about his allergies before the doctors (see post Red Lips). Still, with the continued feeding problems mom knew something was there, something elusive, something that none of the doctors, therapists or the lactation consultant were catching. The doctors seemed to favor the theory of it all being neurological, they had even thought the oxygen saturation issues were too…and neurological problems means generational anesthesia and an MRI after the other invasive diagnostics have ruled things out, including being put under for scopes and then all the x-rays and meds and allergy testing we had already started. Mom knew that this path of medical testing was not working, it was not catching the problem, she knew in her heart it was just damaging her baby further.

The Cry

In May 2017 I shared a photo of Caleb’s tongue thrust with prayer partners and asked them to pray for God to show me what was causing it. On May 26, 2017 a prayer partner for Caleb sent me the same image with Jeremiah 33:3 inscribed upon it. What a prophetic word! image1

God had placed that feeling in my heart that there was a root to the problems. Then I was sent that verse. In July I took these things to the mat and grappled in prayer, asking over and over “Lord please open my eyes and help me see, show me that which is hidden!” I could feel it, there was something there, something in the dark that I could not see!

After months of pediatric specialists, therapists, x-rays, medications and more God did tell me great and hidden things…things that I had not known, that my mother, grandmother and great grandmother had not known…almost a hundred years of not knowing. The suffering had come to a head with Caleb and it took an all-out fight in the spirit realm for the light to shine on that which was hidden, but God did shine the light, and now I see. I cannot thank or praise God enough for delivering Caleb from the damaging circus of medical diagnostics and medications, and for showing me what had wreaked so much oppression in our lives.

The Answer

Finally on July 23, 2017 as I was searching for answers in a Facebook forum another mom mentioned I should look into ankyloglossia. I had already been told by the lactation consultant months prior that Caleb did not have ankyloglossia and Caleb’s feeding therapist had reiterated this stating that Caleb could stick out his tongue so I kind of shrugged it off but politely replied by saying thank you for the suggestion and that I would look into it. I didn’t really intend to make a point of remembering to research it since I felt like the medical professionals we had seen had already evaluated that possibility it for us…But then the Holy Spirit deeply convicted me. I would be lying if I did not keep my word and look into it, and in a timely manner! In order to not be guilty of dishonesty I did a quick Google search that very moment and what I found made my mouth drop – literally. A blog with the symptoms of ankyloglossia that felt like a book about what Caleb and I had gone through.

Tongue Tie

Turns out Caleb was both tongue tied and lip tied! After a few days of research I starting wondering about myself…so I decided to check my tongue in the mirror, I couldn’t believe it, I am also tongue and lip tied! Then I asked my mom to show me her tongue, she is tongue and lip tied! The truth is out, no more tongue tie torture for mothers and babies in my bloodline! With awe and amazement I thank God Who so graciously helped me see. I am so eternally thankful to the Holy Spirit Who kept me at it, He helped me wrestle that answer out of darkness into the Light! Goliath fell in the Name of the Lord God Almighty for David and he can fall for us too in that same Mighty and Holy Name.

To God be the eternal glory, honor and praise. Amen.

Stay tuned for my next post which shares how it was possible for Caleb’s ties to have been missed even though we frequently visited many pediatricians, pediatric specialists, therapists, and more.

Footnote:
To finally get the answer it took an act of staying true to my word to the other mom on Facebook even when I wasn’t motivated to make it a priority. This is interesting because when trying to get pregnant I sought a referral to the only local reproductive endocrinologist on the grounds that I wanted to find the root cause of my infertility. When I got to her office and realized she intended try to get me pregnant with hormone manipulation versus uncovering and fixing the root cause of my hormone imbalance I decided to stay the course (and I am forever thankful for her hard work, night and weekends literally for us!). However, this ended up being dishonesty because I had told the referring doctor that I wanted to find the root cause, even if it meant I had to leave the state to see an in-network provider. I was given a rare referral to an out of network provider. If I had decided to stay true to my word even when tempted not to and search out a doctor that would help me find the root then tongue tie may not have even manifested in my child because of its link to nutrition. Our journey with antibiotics etc. which resulted in Caleb’s gut issues certainly would have been very different because I now know that much of the same opportunistic overgrowth (which is caused by overuse of antibiotics and the poor nutrition provided by the standard american diet) was at the root of my infertility.

References:
1. https://goo.gl/images/iUZNoL
2. A History of Baby Formula – How Emergency Baby Food Became an Everyday Meal For Babies In America
http://domesticgeekgirl.com/uncategorized/history-baby-formula-emergency-baby-food-became-everyday-meal-babies-america/
3. A History of Infant Feeding
https://www.ncbi.nlm.nih.gov/pmc/articlecs/PMC2684040/