Monday, November 10, 2014

what's the deal with ties?

I've been meaning to write this post for awhile now - it might not pertain to everyone, but I am hoping that our experience will help at least one more overwhelmed mommy out there.

My youngest was born Oct 18th of 2013. As of about Oct 20th, 2013 I wondered what we had signed on for. He was miserable - beyond the normal kind of crying that newborns do. Beyond anything I had ever personally dealt with, and I have 3 kids! He screamed incessantly. Slept in short spurts. Seemed to be in pain, and he was inconsolable.

Doctors seemed puzzled, but offered little help. Most of them patted me reassuringly on the back and 'there there'd' me, and most of them thought I was a nervous first time mom. A few of them agreed that things didn't seem quite right. When Declan nursed he would sweat like a grown man. Big beads of sweat rolling down his face. I took a picture to show his pediatrician and she admitted she'd never seen anything quite like it. She went for a 2nd opinion, but no one knew what might cause it.

In December there was a stretch of time that I didn't leave my home for 9 straight days because he screamed so much. I was at the end of my rope, and desperate for something that would help. I called the pediatrician and demanded to try Zantac for possible silent reflux. It may have been the crazy in my voice, but they called in the script. In a few days we saw a fairly significant improvement. He definitely wasn't a happy baby by any means, but he wasn't screaming inconsolably for hours on end. I felt hopeful.

But pretty soon, things were back to normal. He cried a lot, he slept hardly any, he wasn't gaining weight at a healthy rate and I felt back to square one. I cut out dairy, wheat and soy. We tried bottles and formula. I saw lots and lots of doctors through this time. We cycled through pediatricians like it was our job. I finally threw in the towel on conventional medicine and sought the advice of a more naturopathic pediatrician in town.

My first meeting with her was amazing. She sat and spoke with me for 90 minutes. She listened to
everything I said, she asked question after question. She validated my concerns and she vowed to help. She sent me home with a list of things to try and other professionals to consult with.

One of the first things we tried was chiropractic care. I had high hopes for this, as it is supposed to be very helpful for reflux babies. But a few months into our care, even our chiro suggested we look into further testing, telling me that Declan was one of the most difficult babies he'd ever seen in his practice.

Back to the naturopathic pediatrician for more advice. I felt discouraged and overwhelmed. Sometimes I felt plain crazy. I started to doubt myself - maybe I was making more of this than it was? But then, in the worst of moments I knew I wasn't crazy. This was, after all, my third child. I wasn't new at this. I've been around babies my entire life! One day I remembered something the holistic ped offhandedly mentioned to me - something about his thick upper frenulum. And she had asked if Declan had ever been checked for a tie.

So I started doing a little research about this thick upper frenulum (also knows as an upper lip tie). The more reading I did about it, the more I became sure that this was Declan's problem. So many of the symptoms described him exactly. A baby with a tongue or lip tie experiences reflux-like symptoms, and it is often diagnosed as such. Or many mothers are told they don't have a good milk supply and they should switch to formula. Of course there are mothers who struggle with milk production, just as there are babies who have real reflux problems - but often times these issues are wrongly diagnosed.

Medical providers and often even some lactation consultants aren't well versed in this area. A lot of people don't understand the correlation between a lip and tongue tie and the breastfeeding relationship. A few doctors pooh poohed Declan's upper lip tie as being no big deal, and told me there was no way it would affect his breastfeeding.

Although I was discouraged, I pushed on. Through further research, I began to educate myself and what I learned was that if an upper lip tie is present (like Declan's), the majority of the time there is a tongue tie as well. Many pediatricians understand an anterior tongue tie - that often prevents a child from sticking his tongue out. But what many professionals don't understand is that a tongue can have a posterior tie. Declan could stick his tongue out but he couldn't lift it up. And without the ability to lift his tongue, he was unable to latch correctly and nurse efficiently. When he would cry, his tongue would lay flat and square on the bottom of his mouth. When a baby without a tongue tie cries, the tongue should lift up towards the roof.

A baby who latches correctly should have an upper lip that flanges out like a fish, and a tongue that curls around the nipple. A baby who can't latch correctly will have an upper lip that curls under, which is what Declan had. The inability to lift his tongue caused him to gulp lots of air while feeding, and to tire quickly. Nursing was so excruciating for him that it caused him to sweat profusely.

Through further research, I found a local dentist who performs the lip and tongue tie procedure. Not only does he perform them, he is one of the leading specialists in the area.

Declan's procedure was very quick, and his recovery was pretty easy. I felt an IMMEDIATE difference in his latch following the procedure. Within minutes, I could tell he was nursing differently. But the baby needs to re-learn how to feed. A baby begins to learn how to suck in utero - which means many times, it's a long road to teach a child how to suck correctly.

It's been a long, long road with my little peanut. Babies are supposed to triple their birth weight by a year old, and he just doubled his. But his development is on track and we are slowly finding a rhythm with him. After 9 months of him being hungry, exhausted, and unable to feed correctly or sleep well we have a lot of behavior to unlearn and fix. We just began working with an occupational therapist and I am hopeful we will continue to make great strides.

My gut told me that babies shouldn't cry like that for no good reason. That the ever elusive 'colic' diagnosis just didn't make sense. And that letting a baby cry to break him of bad habits or manipulation wasn't at all what was going to work in this situation. My child was, quite literally, starving and no one seemed to think it was a big deal.

If you have questions about any of it, you'll probably find your answers here. I am so grateful to the doctors who trusted my instincts as a mother, and who listened to my concerns and vowed to help me find the answers. I wish I had been able to piece it together earlier, but I hope that this experience will help me to educate others in similar situations.

1 comment:

  1. those pictures break my heart! for him and for you! so thankful you stuck with your gut. i love him!