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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.

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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!

 

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.