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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.

 

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.

 

Pumping Tips September 24, 2012

Pumping can be so challenging and not fun! I have pumped for 3 children; I have changed a few techniques and most importantly changed my attitude. My milk can literally letdown at the sight of my pump now – with my first child I could never letdown. In addition to this I have found that my body responds differently to different types/brands of pumps, so I needed to find what worked for me. I hope a few of the tips I have learned can help others!

-Comfie chair and relaxing atmosphere

-Coconut oil on nipples for lubrication

-Hands free pumping bra

-Embracing the experience and becoming one with the pump

-Massaging/compressing breasts and tilting flanges in all directions while pumping

-Once the milk stops flowing:

-Massage/compress breasts all the way back to my armpits

-Shake breasts while leaning forward

-Manually or hand express for a few minutes

-Pump again until a few minutes after the milk stops flowing (tells you body to make more milk)

-Then take your time sitting there with your breasts hanging out…take your time putting your pump parts back away and the milk you pumped. Smell it and look at it and imagine your baby drinking it. Keep your pump where you can see throughout the day, even when not pumping. Look at it and think how amazing it is that it enables you to provide your human milk to your baby. A lot of pumping is attitude . . . relaxing and getting good letdowns and growing to love and appreciate the experience helps so much.

 My 3 year old has seen me pump so many times he can put the flanges etc. together by himself!

 

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.

 

Tongie Tie Pictures June 7, 2012

Tongue and lip ties, especially POSTERIOR tongue ties, are so  often under diagnosed, and improperly treated (if treated at all) – it makes me frustrated just to think about it. This is not just a breastfeeding issue. Tongue ties can and do cause reflux, dysphagia, tooth decay, difficulty with speech, and anecdotally headaches,tongue, neck and jaw pain in adults. Unfortunately, at this point it is mostly up to parents to diagnose themselves, I hope these pictures of my daughter can help!

N’s tongue at birth. This is a full cry, and as high as she could lift her tongue. She could, however, stick it passed her lips, which was the rationale the first ENT and pediatrician used to say she was not tongue-tied. It is very difficult to see a frenulum without special tools to lift the tongue. You can see the tongue is cupped, and when inserting a finger (nail side down) for her to suck her tongue would put pressure on the knuckle and not the nail, indicating she was unable to make the “wave-like” motion to suck). She could not transfer breastmilk and could barely transfer bottle milk. If you ran your finger under her tongue you could feel a “speed bump,” or in other words a “restriction” – your finger could not slide smoothly from one side of her mouth to the other at the base of her tongue. You can also see a little white thrush (yeast) in her cheeks here – she could not clean her mouth with her tongue, allowing for thrush to grow, this is the same reason people with tongue ties are more likely to have tooth decay.

Unfortunately we later found out the ENT who first revised N’s tongue only lasered the anterior tie, not the posterior tie. This picture shows again how hard it is to see a frenulum when it is a posterior tongue tie (wider, thicker, and further back). You can see here, though, that even after the anterior portion of the tie was removed she still cannot fully lift her tongue when he mouth is open. One should by able to lift their tongue at least 2/3, better yet all the way to the hard pallet, with their mouth wide open and no straining or pain. This is when I started to realize I have a tongue tie too. Someone had mentioned to me when my son was a baby and my milk dried up (something that often happens to mothers who are breastfeeding tongue-tied babies) and I compared his tongue to mine and assumed that he was not tongue-tied. Well, actually we both are. Tongue tie is a common and genetic midline birth defect.

 This is also after the first revision with ENT. Even though her tongue is pretty well lifted here, I had to use incredible force, and it took me many tries to get this picture. You can see the webbed skin attaching the tongue tightly to the floor of her mouth, that is the “tie,” which looked completely hidden without the strong pressure.  These photos were taken about 2 months after the first revision and sent to Dr. Kotlow (pediatric dentist and world expert in tongue tie) for review (he was also aware of our other issues such as reflux, poor milk transfer, failure to thrive, low milk supply, sore and damaged nipples, possible dysphagia, disorganized suck/swallow/breathe sequence etc). He responded with in minutes, telling me it had been improperly revised the first time and was still very restricted.

This photo was taken today, 1 month after the second tongue tie revision with Dr. Kotlow. If you look closely, you can see the lighter skin (diamond-shaped) where her posterior tongue tie was. Dr. Kotlow took off an additional 1/2″ (deep) by 1/4″ (wide) posterior frenulum. When I run my finger from one side to the other in her mouth now it is a smooth “road” with no “speed bumps.” No can lift her tongue all the way to her palate, and is able to suck better, transferring more breastmilk and thus increasing my milk supply – my nipples are happier too! Most of all, having done the revision I expect her oral and surrounding structures will develop better and she will reap the benefits for the rest of her life. It has been a long road, and because we were unable to get her tongue tie completely revised until she was 5 months old we still have a long road to do (retraining her tongue, healing her gut, etc.) I am blessed to have such a great support system and to have been able to find answers and education. I hope and pray that this information will become more well-known and that more dentists (or other professionals) will become competent and willing to revise tongue ties (specifically posterior tongue ties). In the meantime, maybe you are viewing these pictures and finding your own answers, or simply becoming one more educated person . . . I would not wish anyone go through this, but, I honestly believe God allowed it so that we would become educated and share information and support; I hope you do the same.

 

Posterior Tongue Tie – Part 2 June 4, 2012

Despite seeing some major improvement in Naomi’s latch and suck after her tongue tie was lasered and upper lip tie was revised with scissors, it was not the instant fix I had been led to believe.

As time went on her latch and suck deteriorated and my milk supply dropped dramatically. I saw the lactation consultants from the hospital again when Naomi was 3 months old and she only transferred about 3/4 of an ounce in over an hour and she was fussy and crying the entire time, not to mention my nipples were sore and flat. I also found that she had dropped from the 25th percentile to the 5th percentile for weight in just one month. I felt hopeless and wanted to throw in the towel.

A dear friend I met online invited me to join the Tongue Tie Support Group on Facebook and I posted pictures of Naomi’s tongue on there and also emailed them to Dr. Kotlow. Within a couple of hours I had responses from several IBCLCs on the support group and Dr. Kotlow, all said that her tongue still looked very restricted.

I asked Dr. Kotlow if he thought it was worth going back to the ENT who had done the first revision, I will never forget his respose: “Fly to Albany . . . ” Tears streamed down my cheeks as I read it and re-read it. I knew that was what we needed to do. I saw a new IBCLC who agree that the tongue was still restricted and recommended craniosacral therapy, when Naomi was 4 months old we did one CST session and then drove to Albany to Dr. Kotlow’s office.

I second guessed myself when we pulled up to a small old building, then we stepped inside and were immediately greeted by a friendly staff, there was a carousel in the office and pictures of how tongue tie effects breastfeeding all over the office. We were immediately given a private room.

Dr. Kotlow was just as kind and professional in person as he is over email. He took a very thorough history from us, and assessed N’s suck, and upon examining her mouth said it looked like she had never had a revision – that the ENT had probably only taken the anterior tie, not the posterior. He showed us a very informative video and explained very carefully the procedure and what to expect afterwards. N was gone for less than 10 minutes and was not even crying when she returned.

Dr. Kotlow said we could breastfeed as long as we needed to, he showed us how to perform exercises to keep the tongue tie from reattaching and made sure we had more CST lined up. He gave us his cell phone number and told us to keep in touch with him every day no matter what – and I did, she’s almost 6 months now and I still email him about once a week.

We followed up with 2 more sessions of CST and suck training exercises from the new IBCLC. Naomi’s latch and suck steadily improved. We are still doing the suck training, the stretching to avoid reattachment, and plan to get her some more sessions of CST when we have the funds available to do so.

Recently Naomi gained 18 ounces in 15 days – that is incredible for her! My milk supply increased enough that I weaned off of domperidone. It is a little low now that I weaned off, but, still better than it was before her second revision even taking the domperidone.

Naomi’s suck and latch are not perfect, my milk supply is not perfect. Things may never be “normal” by most people’s standards. I still am proud of how far we’ve come. I am happy that not only is she breastfeeding better, but, hopefully she will reap the benefits of not being tongue-tied for the rest of her life.