Infant Silent Reflux Is NOT Silent – Tongue Ties and Lip Ties DO Matter

Infant 'Silent' Reflux is NOT Silent - Tongue Ties and Lip Ties DO Matter | thisgratefulmama.com

When our third baby was born, I knew something was not right when I nursed her, even in the hospital. Experience nursing her two siblings, something just did not feel right.

Our daughter could not open her mouth wide to nurse, even with me using my finger to open wider. Once she did latch, she could not stay on, and was constantly gulping air and choking on milk. 

Our daughter needed to be burped every few minutes or she would spit everything back up and would writhe in pain. And when she burped, it was not a burp you’d expect from a tiny baby. No, she burped like a grown male after they gulp down a whole can of pop.

Buuuuuuuuuuuuuuuuuuuuuuurp.

Seriously. You cannot believe these massive man-burps from her tiny body. Then she’d resume eating, and to relive writhing and crying, she’d need to burp again.

Buuuuuuuuuuuuuuuuuuuuuuurp.  

Again and again and again. Through the feeding and afterwards. The amount of air she swallowed was remarkable.

And the noise. When she nursed, there was this strange ‘click.  Our other kids didn’t do that, and no adjustment to the latch made it go away. In the hospital, the noise reminded me of something I’d read on Facebook in the infant reflux support group called Reflux Rebels. Several people had posted about how their baby had a tongue tie or lip tie and ‘clicked’ while nursing. Other than reading about ties there, I knew nothing about them and knew no one whose child had them.

In addition, our daughter’s tongue was ‘heart-shaped’ because the tip was indented. I learned later this is a rather obvious sign of a tongue tie. The frenulum below the tongue is so tight that it pulls the tip of the tongue down and back, preventing it from lifting up and coming forward as it needs to in order to nurse. Our daughter could not stick out her tongue at all but we didn’t know that quite yet.

As we researched ties, we asked two pediatricians and a lactation consultant in the hospital to assess our daughter. ONE pediatrician confirmed a possible minor tongue tie but told us not to worry about it. The lactation consultant and other pediatrician dismissed the idea completely. So, I went home blaming a fast milk let-down and a baby with a small mouth, assuming we’d just figure it out with time.

I assumed as she grew the nursing woes would resolve themselves, but they did not. And when she began to have issues with acid reflux at 6 weeks, the excessive air-intake became a huge problem. All that air kept forcing the acid right back up and the pain it caused was obvious. Despite my initial denial that yet another of our children had silent reflux, the rapid onset of symptoms confirmed we needed to treat it right away.

This wasn’t our first rodeo with reflux.  I had already eliminated dairy and soy from my diet before our daughter was born because our other children could not tolerate them at all. I was also already avoiding foods that trigger reflux in adults. We recognized the reflux symptoms – refusal to feed, arching back and screaming in pain (aka. colic) right away. Into the pediatrician we went, feeling defeated. I nursed the baby in the office and the symptoms were agreed upon by the pediatrician and she prescribed Zantac.

After two weeks, we were disappointed to find she was still just as miserable. She was crying inconsolably for at least 4 hours per day, and up to 10. I’m not going to lie, the days were rough.

While I agreed with the reflux diagnosis, I was unsettled about the feeding issues. Our other babies had reflux but did not gulp air and choke while eating.  I was convinced she could be happy if she could stop sucking air and having the acid be forced back up again.

Two more pediatricians assessed our baby for reflux and were asked about tongue and lip ties. One dismissed us, but our primary care provider agreed there was a ‘slight’ tongue tie. However, in her experience, it would not cause issues. She recommended we see the clinic lactation consultant.

The lactation consultant was by far the most knowledgeable about ties and feeding issues. She also agreed there was a tongue tie, but did not know of any doctor who would cut a tie. Instead, she focused on helping moms work with it. By the end of our almost hour-long appointment, she thought the excessive air intake was due to over-supply of milk rather than anatomy. She gave me many helpful tips and we put all into practice. We tried bottles. No difference. We incorporated all her adjustments.

The clicking noise continued, as did the consumption of air.

Our daughter was now 9 weeks old, taking the highest dose of Zantac, and miserable. She cried the majority of the day and needed to be held for all naps. Baby wearing was a necessity, but even then, she was still crying.  They switched reflux medication to Prevacid. We gave it two weeks to see if it took her pain away.

She was still miserable. The pediatrician told us she had colic and there was nothing else they could do.

Desperate, I asked questions on the Reflux Rebels Facebook page. They referred me to the  Tongue Tie Lip Tie Babies Support Group. I posted pictures of my daughter’s suspected lip tie and tongue.

beforelip-tie

The comments agreed she should be assessed by a recommended provider in my area who not only assesses ties but also corrects them. They gave me a list of ENTs and Pediatric Dentists.

We chose a pediatric dentist because they use a laser for the procedure. This means the wound heals easier, baby experiences less pain, and there is no bleeding during the procedure so they can see better and have higher precision. For us, there was no question between a laser and someone using scissors and trying to see through bleeding as they cut inside our baby’s mouth.

I expected to have to wait weeks to get in. But a provider 15 minutes away got us in the same week. Confident with our daughter’s symptoms and the lack of effective treatment using medication, my husband and I agreed if the dentist confirmed ties, we would have her do the procedure in the office that day. We were surprised to learn our family dental insurance covered the procedure.

There was much anticipation leading up to the appointment. I was nervous and prayed for clear answers. Was I crazy? Everyone told us this was no big deal. Was I just making it up to give our baby’s colic and uncontrolled reflux a reason? Was this just me trying to fix something that would only resolve with time? Yet, I was excited to know for sure if I just needed to let it go, or if this needed to be fixed, once and for all.

The appointment was covered in prayer by many.

My husband and I took our daughter to the appointment and prayed outside in the car before going in. We had complete peace going in and were in agreement.

The dentist was knowledgeable and frank with us. Our daughter had a level 2 tongue tie. There are 4 types with 1 being the worse – where the frenulum connects to the very tip of the tongue. Our daughter’s tie connected to just behind the tip and was really quite pronounced. The heart-shaped tongue was evidence of how strongly it was being tethered down. This type of tie could cause speech issues, dental issues and is known to cause feeding issues with symptoms we were seeing. Basically, when the tongue is tied down, it cannot do the two things it needs to do when nursing – control the flow, and create an air-tight seal. She could do one or the other. This meant she either choked or gulped air.

The dentist recommended correction without hesitation.

In addition, our daughter did have a lip tie. It was restrictive when nursing, causing her upper lip to be unable to flange outward. However, from the dental perspective, she did not think it would cause dental issues. She the decision to correct it up to us. She did confirm that sometimes, families came back to have it done because the tongue correction did not resolve feeding issues. We decided to have both corrected to prevent the possibility of putting her through two separate procedures and recovery periods.

The procedures took 5 minutes. The dentist used Novocaine to numb her tongue and lip because she was a little older and her tongue tie was described as ‘quite thick’. She came back wide-eyed but calm.

Did it work?

It sure did! Our very first feeding at home (while she was still numb) was a perfect, click-free latch and she did not gulp air. She was still numb but we knew she could do it.  After that first feeding, it took several weeks to correct old habits and for her to heal from the procedures. Her latch for the first week or two while healing was still loose and she gulped air, but not quite as much. When we knew she wasn’t hurting any more, I started breaking the latch until we got it right during feedings. It took a couple weeks to re-learn how to nurse with her now ‘free’ tongue and lip. We did ‘stretches’ on the tongue and lip for 4 weeks to prevent reattachment (the mouth heals very quickly). Once she could eat without choking or gulping air, the reflux medication finally seemed to work – it controlled her reflux and she was happy. We did try to wean her off of the medication but it was evident she needed it. We’ll try again later.

Today, she has reflux, requires medication, but no longer is in pain and her reflux would be called ‘controlled’.

Many doctors and even lactation consultants don’t know what to do with tongue ties or lip ties in infants. We found some doctors really had no experience with ties of any kind and had no idea what to look for, or how to assess them. Others were aware of ties even agreed our daughter had one, but grossly underestimated the severity. Most who agreed there was a tie were reluctant to admit it could contribute to reflux symptoms. That said, finding a doctor willing to DO something about our baby’s ties was a difficult task.

If you suspect your baby has a tongue tie, I strongly suggest you follow through and find someone who is trained to assess the ties and correct them if advised to do so. If you just have questions, the first place I’d start is on the Tongue Tie Lip Tie Babies Support Group. Their list of providers is helpful and you can ask there if anyone has seen the specific provider you are considering. You can also ask about others experiences with the procedures and see pictures of what it looked like for their children.

For our baby, tongue and lip ties mattered – while they did not cause reflux, they made it uncontrollable with medication. The correction procedure literally changed our baby’s colic to calm in 5 minutes and the recovery was no worse than teething symptoms.

Here’s our daughter, a few weeks after the procedure, with a tongue that is no longer heart-shaped. Happy, with controlled reflux.

Worth it.

now

 

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Infant Silent Reflux is NOT Silent – God is faithful, still.

Infant Silent Reflux Is NOT Silent: 5 Ways To Help Older Children Cope | thisgratefulmama.com

Watching our third baby suffer in pain from silent reflux is not any easier than with the first or second child.

A tiny baby writhing in pain, arching their back and screaming, red-faced until they have no more breath, is gut-wrenching for even the seasoned reflux parent.

Silent reflux is still awful.

While this time around we were more proactive in asking for and accepting help, daily, we were in the trenches, trying to soothe our hurting child. And, as I shared before, this time around, we also struggled to help our older children cope.

It was not easy for our children to watch their baby sister suffer either.

Many days, I sat back and observed how our entire family was affected by our baby’s pain. I often wonder why? Now when I say why, I don’t mean the science behind it – I actually understand that quite well by now.

No, I mean WHY?

Why would God allow a baby to suffer this way?

Why our children?

Why is this so hard?

Why isn’t He answering my prayers NOW?

My emotional response is to ask why, neglecting to go any deeper. Asking why only allows me to dwell in a dark place of mourning and frustration. It is not wrong to come to this place on occasion, but staying there long does only damage. There is no hope there, and as your little one suffers, trust me, you need all the hope you can get.

Like many injustices and suffering, we may never know why on this side of heaven, so dwelling there is not a fruitful endeavor.

Instead of asking why, I should be asking where God is as we walk through it.

I don’t know why He allowed this again, but I do know where God IS.

Right here.

With me. With my husband. With our baby. With our older kids.

He has not looked away even for even one second, even thought there were times we took our eyes off of Him.

God is not surprised that our baby has reflux.

He made her. Carefully. Without mistake.

God is allowing reflux to happen for a reason, even though I want it to be over without all the suffering.

I also need to ask WHAT is God doing?  

What is He teaching our family?

What is He working out in me?

What is He equipping me to do?

For now, it is evident He is teaching each member of our family to be more dependent on Him. He is teaching my husband and I to trust Him with each child He has given us, and to parent with His strength.

And to trust His perfect timing.

I am grateful that we have already seen Him work in this situation twice before – and He has an excellent track record. God never changes. I am confident He will work here too. I have already seen how He has used these experiences already to encourage other reflux families, just like I have seen Him work for good in our family’s life because of our son’s food allergies.

I expect Him to show up big here too.

God walks through all suffering with us – comforting, supporting, equipping, and carrying us through the worst of circumstances. He gently, lovingly guides us freely offering peace, kindness, love and forgiveness along the way.

From day one.

I admit, I do not agree with our baby suffering, but God’s character is good, regardless of our circumstance.

I trust Him and believe He will use this suffering for good. The countless hours spent fervently praying over our babies for relief have not been spent in vain, although I do wish He would answer those prayers now.

He answers all prayers in His timing. And I do trust His perfect timing and care. And that His ways are higher than my ways.

He knows the entire plan for my life, my family’s life, and this sweet baby. He is working for good, in something that feels only bad. The Bible is clear that God works for the good in ALL things of those who love Him – And I believe Him. And so I cling to this truth.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

He has shown Himself faithful to me and to each of our children.

So, while we walk through this, we keep our eyes fixed on Him. We expectantly wait for Him to make His presence known.

And every day, He does.

Because He is faithful, still.

 

*I CANNOT wait to share how God has worked in this situation already – our daughter has improved SO much since I started writing this in July. In the craziness of those days, I never published this – so here it is (With a few more posts to come explaining new lessons learned about infant reflux the third time around, and just how God’s timing was perfect in this situation).

Just Once More…

Just Once More

I love being pregnant. Some people think that is weird, and I’m ok with it. I don’t love the nausea, aches and pains, or interrupted sleep, but there is just something incredibly special and sweet that words cannot quite describe.

At first, despite the sickness, I love the knowledge that a little someone is being knit together inside of me. There is simply nothing that compares to the truth that God, Himself, is creating and carefully making a person with their own unique features and personality. A miracle within. It is the knowledge that He chose me to be this child’s mom, my husband to be her dad, and that this baby is the perfect addition to our family.

For you created my inmost being; you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.
Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Psalm 139:13-16 (NIV)

At first, our pregnancy was a secret shared with few. Then we had the privilege of sharing our special, joyful secret. We have lived in hope for months, preparing for the arrival of a little person who has already changed our heart and made us love them more than we ever thought we could.

I don’t love that I’m on round 3 of gestational diabetes. I don’t love the carb counting and finger poking. And I certainly didn’t love the 1 hour and 3 hour glucose tests that I simply cannot pass in any pregnancy. But I am grateful the condition has been managed with diet and exercise. Not using insulin has been a effort of discipline and self control, and has been a very tangible answer to many, many prayers.

The more pregnant I get, the more others ask if I’m ready to be done. They expect that I am. They figure I’m fed up with this this and ready to get the show on the road. My doctor has commented on how the third trimester for many third time moms feels like eternity. And yet…it doesn’t. Not to me.

Here I am in the final weeks of this third pregnancy. I am very emotional and feel like I can’t get a handle on this roller coaster. While I’m excited to meet this little one, I’m not ready to be done either.

This will most likely be our last pregnancy. My husband and I have been in agreement on the number 3 since we started talking about kids. And while it is hard to admit this magical time may be the last time, unless God has other plans, this will probably be our last one.

So during this pregnancy, I’ve been quietly enjoying even the struggles – finding myself grateful for the chance to do this one last time.

This pregnancy has been my most challenging. Blood sugar issues showed up earlier, and were harder to manage. This is my first pregnancy as a stay-at-home mom and I found the days chasing little ones to be harder than sitting in a laboratory or desk during the day.Plus, I’m 6 years older than when I began my first pregnancy, our evening activity schedule is busier, and I have found it harder to juggle everything effectively without getting overwhelmed and emotional.

And yet…

There has been such a sweetness in feeling the baby kick, squirm and hiccup. Day or night. Strangely, this time, even those pummeling bladder kicks haven’t frustrated me as much although they have certainly kept me on my toes.

Keeping the secret about this pregnancy was just as special as the first two times, even though we’d done it before. And this time around because our other kids are old enough to have an opinion about the baby’s gender, we did our first and only gender reveal party with family. It did end with a 5 year old in tears, but he’s coming around. This baby girl will be VERY well loved.

There is a special contentment in just being pregnant. I’m not in a rush to get past it or to just be done. This is the last time I’ll be unable to see my toes because of a baby in the way. The last use of maternity pants and shirts that never seem long enough. And the last time I’ll wonder how my stomach could possibly get any bigger. Knowing this labor and delivery thing is also just once more makes it less scary, less of a hurtle, and the start of a whole new stage that will also be full of last moments.

Once more will we see a baby’s face for the very first time. And just once more will we have that first special moment holding her. Just once more will we carefully pick a name and hope it suits her. And just once more we will hear that first cry.

Just once more we will watch our children meet their sibling. And introduce the baby to great grandparents, grandparents, aunts, uncles, cousins and friends. We will see that joy and wonder on their faces as they meet our baby that first time, just once more.

And just once more will we bring a baby home and feel that exhaustion and sleep deprivation that comes with caring for a newborn. And we will feel again the fierce love and joy of this little life that makes it all worthwhile. We will be faced with the realization that we somehow are responsible for now 3 little lives – to love, tickle, discipline, feed, snuggle, raise and introduce to Jesus Christ.

The truth is, this baby is no more special than the first, or second. They are all equally miracles created by God, and entrusted to us. But I do find myself treasuring the moments leading up to those precious firsts because they will also be last. Instead of being swept up in the busy-ness of life, I’ve been fighting to just experience what is happening NOW.

Life is speeding up all around us, with sports, and school wrapping up and staying busy outside because the weather is so nice. And yet…I am ready for it to SLOW down. To take time to treasure the time that is left before the baby is born. To spend quality time as a family of FOUR. To snuggle up and read more books and play harder with the two children that are here now. And to pour love into them because they are just so very precious. And together, as a family, to anticipate the moment when we will joyfully welcome the arrival of this sweet new baby. And become a family of 5.

But time isn’t slowing down. It will not wait for my nostalgia or for me to be ‘ready’ to be done being pregnant for the last time. This baby is coming. And very soon. Only God knows the exact moment and as with the other two babies, I can trust His perfect timing to be exactly what this baby and family needs.

I cannot wait…but will relish these last days or weeks of knowing her by her movements as I wonder what she will be like. Even in those nighttime hours as she does acrobatics and interrupts my sleep.

So today I find myself grateful. Hopeful. Not in a rush, but surrendered to God’s perfect timing.

And I remember that all that is to come in the next busy stage of life is just once more.