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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.

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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.