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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.

 

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!

sns

 

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.

 

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!