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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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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!

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

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

Lots of skin to skin time

Bed sharing (and nursing while sleepy)

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

Babywearing

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Suck/Swallow Therapy March 3, 2012

Revising my daughter’s posterior tongue tie helped so much, she went from removing around 1/4 ounce of breastmilk to removing about 2 1/2 ounces. Still, she seemed to constantly break suction while nursing. I chose to revise her upper lip tie as well, she can now flange her lips more and she no longer has a painful looking mark on her lip after nursing; unfortunately it did not solve the problem with poor suction.

We had already seen a speech-language pathologist through our county’s “Birth to Five” early intervention program, and she had helped us some, but, seemed to think my baby was nursing well enough and we opted out of the program. Our lactation consultant (IBCLC)recommended a specific team of speech-language pathologists that specialize in infant sucking and swallowing issues and work in the NICU where I delivered. I had low expectations, but, the IBCLCs I have been working with have given me great advice so far, so I made the appointment.

My daughter (12 weeks old now) had her first appointment with the new speech-language pathologists yesterday, they were AMAZING! They did the most thorough oral examination of anyone so far, and were able to see that my baby has a perfect range of motion and a perfect latch, but, they noticed when she breaks suction (and slides further towards the tip of the nipple, not having enough areola in her mouth) that she also retracts her tongue. She is nursing like she is still tongue-tied! What amazed me, is that they went on to suggest some techniques (the main one being to provide cheek/jaw support, which also encourages her tongue to come forward and in turn results in stronger suction). We will work with her during bottle and breastfeeding both (as I suspected she “nurses” the same way regardless if it is bottle or breast) for two weeks, and then we will see the speech pathologists again . . . they seem optimistic that my little one will be much improved by then, but, if not they will keep working with us.

I just cannot believe throughout this journey how many different types of professionals can help so much! I only wish the information and resources were more readily available.