Infant ‘Silent’ Reflux is NOT Silent: 5 Survival Tips for Parents

silent-reflux-is-not-silent

1. MAKE Time For Sleep

Duh-this may seem like a no-brainer if you haven’t had a hurting baby. But our baby hurt, and could not sleep. We rarely slept more than 4 hours per night, and those were non-consecutive 40 minute spurts. Sleep broken up like that is not restorative. As days months pass, the need for any solid chunk of sleep becomes desperate.

Here are a few ideas to schedule sleep:

  • Trade off – one parent goes to bed early while the other takes the evening shift. Take turns during the week.
    • If your child cries most of the night, use a loud fan, ear plugs or noise machine to block the noise so you CAN sleep while the other parent is awake.
  • If you are a working parent, allow yourself one day a week to go home and sleep for an hour or two before picking your child up from daycare.
    • If daycare isn’t a possible outlet for you, ask a trusted family member or friend to come hold the baby while you sleep. And when they come, don’t do anything else. Just sleep.
  • Do whatever it takes to help your child sleep – I held our son on my chest in a big chair with pillows propping my arms up so he couldn’t fall for his first 3 months of ‘sleep’.

2. See a specialist

No matter how good your pediatrician is, see a specialist. A pediatric Gastroenterologist (GI) just knows more because of their specialized training. They see more cases of severe reflux than a pediatrician and have resources and ideas even the best pediatrician may not.

3. Be Honest and Transparent

While no one wants to complain about their child, it is not complaining to admit or explain what is really going on. Take time to explain why you can’t volunteer, go to an event, or why you might be late or need to leave early. Being open and honest will help others understand, give grace, and even offer to help. People who don’t know you need help will not offer to help.

Another reason to be open and honest is that sharing your experience will add a new level of authenticity and trust in your relationships. You may be surprised which relationships thrive in this time and which ones do not – true friendships are forged in fire. These are the people who walk through struggles with you. Life isn’t perfect and we shouldn’t pretend it is – don’t be afraid to share the hard stuff.

4. Seek Experienced Reflux Parents

In addition to a great pediatrician and GI specialist, others have been in these trenches before you. They have spent their days and nights loving and doing everything they can to not only soothe their child, but also to learn how to do it better. As a mom who has gone through what you are going through now three times – I know the advice and encouragement from seasoned veterans is invaluable. If you don’t know any such moms, here’s a few resources that may help:

5. Pray and Then Pray Some More

In the middle of the night, all day long, when your ears, back and arms hurt from rocking and soothing the screaming, prayer is your lifeline to the God of all creation. He made you, your baby, and He knows exactly how hard this is for all of you.

He listens, He answers, and He equips. Reach out to Him for strength, comfort, and peace.

I recently studied John 11 and was so moved by Jesus’ compassion and how deeply troubled He was over the death of Lazarus. He comforted Lazarus’ sisters Mary and Martha and wept beside Lazarus’ grave. Even though death had to happen for Him to show His power over death as He raised Lazarus from the grave, He took NO joy in seeing the sorrow of those He loved. And, He felt His own sorrow over the situation. Cry out to Him, He hears you. He is your help and holds you both in His good, sovereign hands when there is simply nothing else you can do for your child.

On my bed I remember you;
    I think of you through the watches of the night.
Because you are my help,
    I sing in the shadow of your wings.
I cling to you;
    your right hand upholds me.
Psalm 63:6-8 (NIV)

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).

Infant Silent Reflux Is NOT Silent – 5 Ways to Help Older Children Cope

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

Adding a baby to the family is a big adjustment.

For everyone.

And when that baby hurts and has perhaps more needs than some other babies do, it can be an even greater adjustment.

The newest sweet addition to our family has silent reflux and had a tongue tie and lip tie that caused feeding issues which caused pain and crying for much of each day for three months.

Despite the challenges, we are so grateful for our growing family. We are grateful that even though our baby hurts, she is healthy and thriving.

But watching a baby cry in pain gut-wrenching. It motivated us to seek treatment and to research everything we could find. This is our third time around with silent reflux and we are still learning. Every baby is different. There is no magic recipe for treatment that works for all babies.

For a while, it seemed like nothing could help her. But we kept praying. Kept searching. God has been faithful throughout the journey. When I have time to process the past months I’ll share what did help our daughter. She is still medicated for reflux, but it is now under control most of the time. God is so good. And His timing is perfect.

While we waited for the solution to control her reflux, we did our best. Many days we carried everywhere, all day long.

Often, she cried whether we held her or not. At least when she was in my arms, she wasn’t in pain alone.

If you’ve spent time around a baby who cries a lot, you know even the most seasoned parent can get frazzled – even a mom who cared for two other reflux babies.

A frazzled mom is simply not at her best, even when she is giving her best.

This frazzled mama has two older children who were not getting my best. Given the volume of crying, most interactions with my kids was done at an elevated volume and tone. I am not proud of some of the sharp replies and responses they got from me these past months. It is not surprising that our older children also struggled to cope. 

Our son had severe silent reflux, but he was our first child, so he had our full attention. Although our second child also had reflux, her symptoms were present more so at night than during the day, and were never as severe as her brother. Her older brother did not have to cope much with her crying because he slept through most of it.

While we are so grateful our third child has been a champion sleeper, her symptoms are expressed mainly during the day. And the pain and crying expression of that pain has been profound. In the second and third months of her life, it was not uncommon for her to cry for 5-10 hours of the day. She was either eating, sleeping or crying. There was little time or energy for anything, or anyone, else. For any of us.

If you are a parent of older children and a hurting baby, here are some tips for helping your older children cope with what is going on at home.

Infant Silent Reflux Is NOT Silent – 5 Ways To Help Older Children Cope

1. Don’t Expect Too Much

When frazzled by a screaming baby, we seems to expect older children to be on their best behavior. However, kids get just as frazzled as we do. I often found myself dismissing them, or asking them to wait for unreasonable amounts of time for basic needs because I was overwhelmed. But being overwhelmed does not mean they don’t need me as their mom, nor does it give me the right to expect them to not need anything while the baby is crying – especially when the baby is crying for most of the day.

If I am not at my best, it is not fair to expect our children to be at their best. But how should we expect them to behave? It is certainly OK to ask them to follow already established family rules – we wont’ be encouraging bad habits or lowering our standard of discipline because  that would have to be corrected later. However, it is appropriate and important to extend grace to an emotionally frazzled child who may just need more attention. Is your child’s misbehavior a cry for attention, or simply from frustration and confusion about what is happening in their home? If so, they need your help to cope.

2.Carve Out Quality Time

If siblings are struggling to behave or are emotionally frazzled, MAKE time to spend with each older child. This doesn’t have to be a big event. Take advantage of baby’s nap time and spend it with older children – household chores can wait, no matter how messy the house is. Sit down, read a book out loud, play Legos, or color. An amazing attitude adjustment can be seen in our kids after just 15 minutes of dedicated time. They need more of us. We need to make the time for them, no matter how old they are, or how much the baby cries.

3. Recruit Other Adults

After quality time, your children may still struggle. If so, it might be time to recruit some help. Grandparents, aunts, uncles and trusted family friends are perfect to lavish love on older children. Often, they do not know you need help and are more than willing to help. Or, those who don’t want to overstep may just waiting for you to ask. Not good at delegating? Check out this post for some ideas of ways others can help and have graciously helped our family. Then go ASK!

4. Talk About It

Siblings may not know if it is OK to feel frustrated, sad, or confused about what is going on at home. The crying, and decreased attention from their parents on top of the normal adjustment to a new family member can be hard for them to understand and may need help sorting through their feelings. One way to get them talking is to share how you are feeling. Tell them you are aware you’ve been spending less time, that you miss them and cherish the time you do have together. Gently, kindly share what you have noticed about their behavior and mood. Give them time and assurance that it is alright to share their feelings and that it is OK to have those feelings. Assure children that this season will not last forever, and be sure to make sure to tell them how much you love them and how proud of them you are. Repeat.

5. Get Out Of The House

It can be easy to just stay inside when baby cries most of the day. But isolation is not helpful for anyone. Resist the urge to stay inside and get out of the house. Don’t worry if people look when your baby cries – most of them think you are doing a great job. They may look only because they heard a noise. What they see is a mama who is doing her best. You don’t have to go far to escape the house. Go for a walk, to the park, the zoo, or anywhere that is out of the house and out of routine. Even if baby cries the whole time, go anyway. Crying never seems as loud when you’re outside, and you never know, you might get a break from crying if baby gets some fresh air.

 

Hands FULL. My Cup Runneth Over

Well hello there. Wonder where I’ve been these past months?

On May 11, 2016 at 12:34 pm, we were blessed by the arrival of our daughter Audra Grace at 7 pounds 9 ounces.

Audra Grace

To say things have been busy…is an understatement. In fact, I don’t have time to be writing this now, but my soul and my brain are in serious need of writing therapy.

While I expected an adjustment period, I was unprepared for what a third child adds to the mix. Our hands are FULL.

One month in, I was just starting to get used to three children. We started getting out of the house on time, and figured out how to grocery shop with a baby and toddler in the cart, and 5 year old in tow…

But when silent reflux showed up at 4 weeks, it threw me for a loop and I’m still playing catch-up.

Many days are a blur. In some ways it seems like we’ve had this baby forever, and in other ways I feel like I blinked and she’s 7 weeks old.

How can that be? The newborn period is so very short.

My hands are literally FULL. Most everything is done with one hand. The other is holding a baby… shopping, cooking, cleaning, reading to the kids while they hold the book…

At times I feel like everyone needs a piece of me, and there aren’t enough pieces to go around.

I feel worn out, and fear I am not giving the older two enough attention. I am grateful  as they throw their arms around me without judgement or resentment. But as my 3 year old snuggles in with me at night and says, “I need you, I miss you”, I feel the pang of mama-guilt mixed with the joy of being loved unconditionally by our children.

And so we snuggle tighter, and a little longer.

Despite challenges, what I see looking back on the past 7 weeks is  an abundance of blessings.

A big brother and big sister falling in love with their baby sister is one of the most precious things I have ever witnessed. I love how they are ready and willing to help grab diapers, pacifiers, and burp rags, or to just sit and talk to her. They are my second set of eyes, alerting me when she spits up, is crying, or needs something. This baby is VERY well tended to! It is fun to watch the older kids play together more than ever because their parents hands are often full. I am grateful to see how easy going they have become and how they are growing in responsibility and love.

And then there’s my husband. My hero, yet again. My rock through pregnancy and delivery. My encourager. The tenderness he has shown as he cared for me and our family after delivery is inexpressible.

Selfless. Persistent. Loving. Enduring.

This man took over so much around the house and with our kids. He entertains and plays with our kids, filling our home with giggles and squeals of delight. He brings me beverages and snacks while I feed the baby. He cooks, cleans and runs errands, all while working full time. Thoughtfully, he recruited help for me when he had to go out of town on a work trip so I wouldn’t be overwhelmed. He is a full time, hands-on daddy and husband.

When we’re having a rough reflux-day, he comes home from work early to give me a break.  In the middle of the night, he takes over rocking the baby when she can’t fall back asleep. And he encourages and compliments, while graciously biting his tongue when I’m not doing the same. I am so grateful for his faithful, patient, selfless service to me and our family as he loves us through actions.

Words can simply not express just how grateful I am for him. Words fail me.

Our family and friends have blessed us beyond measure. Gifts, meals, visits with helping hands and loving arms have been given in abundance. We have been so generously cared for, the thank you card list keeps getting longer an longer (some day they will actually get written and be mailed!).

I feel the prayers of many lifting our family up as we adjust to being a family of five, and as we pray for Audra to feel better. We are so well loved, cared for, and covered in prayer. When I think I’m at my limit holding this sweet, crying child, a phone call or text message comes through checking in on us, or to tell me they are praying for us – always in perfect timing, bringing tears of joy and the feeling of being known.

And I feel no doubt that the Lord who created these precious children sees me, knows our struggles, and is carrying us through. We trust in his healing of Audra’s reflux, and that it will happen in HIS perfect timing. We trust that any present suffering is being used for good, and we expectantly wait on Him to show us exactly what He is doing here. I feel his loving, comforting arms as others selflessly step in to serve us and to lift us up.

He withholds no good thing from us.

We just have so much to be grateful for. I refuse to wish these days away, reflux or not. So we focus on gratitude, on our family, and keep our gaze on Jesus. Time is flying by, and we commit to soak it all in, no matter how busy or exhausted we are, or how much this sweet hurting baby cries.

Our hands may be full with these three precious children, but our life, and hearts are overflowing.

My cup runneth over.

 

 

Infant Silent Reflux Is Not Silent – 10 Survival Tips for Parents When Your Child Does NOT Sleep

Infant Silent Reflux Is Not Silent - 10 Survival Tips for Parents when your child does NOT sleep

There are infants who sleep through the night right away, or even within a few months of bringing them home from the hospital.

We were not that family.

Read more about our experience with infant reflux:

As I’ve shared before, our firstborn had silent reflux. Acid burning, pain abounding…heartburn. In our experience, reflux is worse at night, and greatly affected his and our sleep.

When many parents say they had a hard night, it means the child was up a few times, perhaps staying awake for a (whole) hour, or that perhaps they were up at 4 am for the day. Let me be clear that I am not diminishing how this feels in the morning – tired is tired! But I think it is fairly safe to say most babies and parents manage one solid 2-4 hour stretch of sleep per night, most nights. They are tired, but are usually functional the next day.

When I say we had hard nights, I mean that most nights, he did not sleep. There were 3-5 hours stretches of crying and discomfort followed by a 40-minute nap. But even this short stretch was interrupted by writhing and painful screams.Then we repeated the crying and short nap, or he was up for the day. He did not sleep a 3-hour stretch until 10 months.

As his nursing mama, neither did I. And often, neither did my husband.

We tried everything. We held him, we tried walking, co-sleeping, swinging, bouncing, singing. In desperation we tried crying it out but it was short-lived and agonizing for mom and baby  – a hurting baby cannot self-soothe, nor should he have to.

Nothing worked.

We spoke to doctors, lactation specialists, other parents and read books, articles and blogs by sleep consultants. There were many great tips, but none helped our son sleep.

If you think that sleep-deprivation is hard on your body and mind, imagine how it affects a baby – they are supposed to sleep twice as much as we are!

He, and we were exhausted – a term I no longer use lightly.

After 10 months, his sleep ebbed and flowed along with his silent reflux symptoms until FINALLY at 15 months, he slept through the night. This too came and went, but his sleep generally improved so MOST nights were silent nights.

That is, until the reflux returned with vengeance when he was 2 1/2 and I was 7 months pregnant with our second baby. Then his sleep success derailed and we recognized old patterns of returning pain and chronic coughing. This was no sleep ‘regression’. It was sleep succession. But we will save the story of toddler reflux for another day…

Because our sleep experience was a struggle, my goal is to share how to survive – to endure, to wait for healing, and to do everything in your power to encourage sleep. But more importantly, my goal is to empathize, and encourage parents that sleep does come, even if not right away.

10 Survival Tips for Parents – When Your Child Does NOT Sleep

1. Schedule YOUR sleep

While parents may not need as much sleep as a newborn, they do need consistent sleep. When your child doesn’t sleep, sleeping when the baby sleep doesn’t work. Consistent sleep-deprivation has consequences. Parents need to make their own sleep a priority. Be creative. When our son was young, I worked. Some days I went home and slept for 2 hours before picking our son up from daycare. OR, I’d work a few longer days, and take off early on a slow day and sleep for (gasp) 3 hours! If you don’t have daycare as an option, read on…

2. Enlist help

While not all parents have volunteers to stay up at night with the baby so the parents can sleep, most have someone who will come during the day. Ask for help. And accept it when it is offered. Don’t be prideful. Don’t shrug it off. Sleep is necessary and important. Ask them to come over and snuggle your child. Be sure they understand your child might cry the whole time. Our son’s grandparents, aunts and uncles and our close friends were willing. We weren’t good at asking.

3. Be transparent

Nothing good will come from pretending everything is fine. Don’t sugar coat what is going on. While there is a fine line between explaining the facts and complaining, if you aren’t truthful and transparent, your sleep-less existence will be lonely, and without help. And, others will not understand why you suddenly traded your social life for sleep.

4. Request advice from professionals

Assuming you are already navigating reflux treatment, don’t neglect to see lack of sleep as a symptom that needs to be addressed. When sleep is this difficult, more than just a pediatrician may be needed. Request a consult with a GI doctor, ask for a sleep study, or meet with an occupational or sleep therapist.

5. Try new strategies

I cannot advocate the ‘cry it out’ method because we learned that a hurting baby cannot self-soothe. They hurt and need help. However, there are many other great options to try. It is a good idea to try different sleep positions, but instead of buying a bunch of rockers, swings, crib wedges or chairs, borrow them. Research them. We used a Nap Nanny (no longer sold, but this Dex DayDreamer™ Infant Sleeper is today’s equivalent product) with an angled back to help with reflux. It was the only place our son ever slept at all for most of the first year. Please note: the most important comment on these sleepers is to never place them in a crib. They are intended to use on the floor for baby’s safety. 

6. Join a support group

Did you know there are GERD support groups all over the world? You can find the Reflux Rebels or Reflux Support Group on Facebook. The Facebook groups are generally closed, which means only group members can see your posts. You will find people struggling with the same issues, encouragement, and wise advice from real-life experience.

7. Don’t wake the baby

If your baby does not sleep, DO NOT interrupt sleep for any reason. The theory that sleep begets sleep is true in our experience. There is no event more important than your child’s sleep if they NEVER sleep. Do your best to set conditions for sleep and then protect that schedule. If that means leaving early, coming late, or not attending something, SO BE IT.

8. Pray

The best comfort I found during this time was prayer. And scripture. It is no surprise to God that you are tired or struggling. He sees your child and He sees you. Let Him carry you, and trust that He will bring both healing and sleep in His time. AND, know that your struggle has purpose, even if you cannot see it yet. Trust His plan, purpose and promise that He is working in all things for good of those who love Him…

9. Hang on to hope

Our son struggled for much longer than we wanted him to. And there were days we thought he would never, ever sleep through the night. But he did. And now he sleeps hard, and well. Eventually, even your child will too.

10. Know you are not alone

Other moms have endured what you are enduring. Find them. They won’t waste your time with advice that won’t work, they’ll instead spend their time listening and encouraging. They will understand that not all problems can be fixed with a book, herbal remedy, fancy swing or sleep-training method and they will remind you that some problems  have to resolve with time.

 

Infant Silent Reflux is NOT Silent: My Experience Nursing and Caring for Our Hurting Son During His First Year

silent reflux is not silent

This is part one of two posts about nursing a hurting reflux baby. This post is simply to share my experience and struggle nursing and caring for our son who had silent reflux.

The purpose of part two is to encourage moms and equip those who support moms nursing hurting babies with knowledge of how to help. These women need your support and help; nursing a hurting child is no simple matter. In fact, nursing any child is often no simple matter.

If you are struggling with nursing, you are not alone.

It is no secret that our son had silent reflux as a baby. He never spit up – it burned both coming up and going back down when he swallowed it. Reflux medication did not eliminate his pain but merely took the edge off. This meant he hurt for most of his first year. For more about what silent reflux is, and how it is treated, read:

This story has taken longer to share because it is deeply personal and emotionally charged.

Many of those closest to me do not know the difficulty I had nursing and caring for our son, particularly during the first 3 months, and every night during the first year. Why? Telling the experience means recalling feelings of inadequacy, pain and failure that plagued my first year as a parent.

Nursing is ‘supposed to be the most natural thing’:

For me, it was not. It took a VERY long time to get the hang of it, even with multiple lactation consultations. It was physically painful for months. I felt scared, inadequate, guilty, and exhausted, but determined to figure it out. Failure was not an option.

Daytime Feeding:

During the day, he wanted to nurse constantly to soothe his burning throat. While spurts of cluster feeding are normal, this was extreme and constant. He would eat well but be frantic to nurse minutes later. While nursing, or passed out on my chest, he was somewhat calm – but his body never really relaxed.

Because he grew rapidly, his reflux medication dose was often too low for his body weight. During those transition times before his dose was increased, his nighttime symptoms, which we will discuss later, creeped into daytime. Those days and nights were truly a battle.

When I went back to work, I pumped and our daycare provider gave him bottles. For several months, he refused them and ate only as much as he had to at daycare. Then he cluster fed when I picked him up, and on weekends.  However, we were blessed when at 6 months, his daytime feedings finally became pretty regular.

Spacing feedings out:

We sought help for the constant nursing. We saw lactation and our pediatrician. They both encouraged us to space feedings out. I wanted to, and we tried. We held him as he slept, even as our limbs went numb. We tried everything to soothe him and lengthen the time between sessions. The most effective way was to hold him and do DEEP squats. Up, down, up, down, – until our legs and backs gave out. My poor husband often came home to a sweaty wife who could hardly stand up. It was not my best time. Squats – all day, every day. During maternity leave, we barlely made 1 hour between feeding start times, and we did everything physically possible to space them out.

The physical toll:

Keeping up with nursing demands during maternity leave was physically exhausting. When I should have been recovering from having a baby, I was doing continuous squats with little or no sleep (when I say no sleep, I mean actually NO sleep). The constant nursing was physically painful and draining. And I made so many mistakes – like failing to ask for more help. And not getting up to eat or drink water between each feeding because I was too exhausted and afraid to move. This left me often dehydrated, leading to other physical problems I won’t detail here. I did my best to eat healthy, despite cutting problem reflux foods (ALL dairy, citrus, beans, broccoli, etc.).

The lack of sleep and physical demands during maternity leave did NOT help recovery from labor and delivery. I was still not recovered at 12 weeks when I returned to work. At 6 months, I went back to the doctor, still in discomfort and pain. I was told it was from lack of sleep and rest for my body. Stress – it really does take a toll on the body.

Nighttime Feeding:

From 7 pm until morning, the reflux caused a different problem for the firs year. He was desperate to nurse, frantic. He began to eat, but suddenly it was like someone pinched him – his body stiffened and fists clenched. He threw his head back and the scream from his tiny body would shatter my heart as he tore his mouth away from my chest (ouch).  The wail continued, rattling until no breath was left and his face turned beet-red. We tried bottles and pacifiers. He refused. When he took a bottle at night, it too resulted in pain.

So we did our best to soothe him. Arms and backs exhausted after an hour or so, I would give in and nurse him. Still frantic, then the few moments of calm would be shattered by painful screams until finally he would pass out. Afraid to move, I held him until I got up the nerve to tiptoe upstairs to try to lay him down. If the floor creaked, or he was moved in any way, he would wake in pain. Rarely could he be transferred from my arms. Often, I stayed on the couch, holding him while he slept while trying to rest my eyes. Even sleeping, he cried out in pain, limbs flailing. I always prayed he would stay asleep, but he wouldn’t. He slept for 40 minutes, followed by a few hours of squats and pacing.

Most nights, my husband would find me weeping in a puddle and take over.

We did that every night of maternity leave and most nights the first year. He did not sleep even ONE 2 or 3 hour stretch until 6 months. Thereafter it was infrequent. He did not sleep through the night until 15 months and did not sleep well during the night until two and half. This child was in serious pain. He was doing the best he could.

Isolation: 

Because he was so upset between feedings, it was not feasible to get out of the house during maternity leave. He screamed, writhing in pain in the car and anywhere we went. We paced church hallways with a screaming child, and literally sprinted to get through Target. It was so stressful, it just wasn’t worth it.

With the snowy winter weather and screaming, we did not get out much. It was impossible to nurse around others because he would writhe and flail in discomfort as he nursed. I ended up locked in a bedroom nursing him at family events. Alone. During the day, I was too afraid to wake him, or too exhausted to talk on the phone. I quickly lost touch with many friends. I was incredibly lonely. I cannot express my gratitude to my husband, family, and a few close, persistent friends who lovingly stuck by my side.

The Emotional Toll:

The screams rattled me to the core. He was in pain and it was my job to comfort him. The one thing, nursing, that was supposed to soothe him, hurt him. I felt inadequate and like it was my fault, even though knew it wasn’t. I was failing him and could not fix this problem. At night, I became unable to sleep when he was. Since he refused bottles, I was in demand all the time. Any noise would jerk me fom sleep – wide awake, adrenaline pumping while praying he would keep sleeping. I was anxiety-ridden. I worshipped sleep but it eluded me as I pleaded and prayed to God first for relief for our son and then for sleep.

After 1-2 hours of non-consecutive sleep per night, I was a walking zombie. Looking back, I cannot believe I did not lose my job. I was underproductive and cranky. My boss and coworkers were understanding and helpful despite my edgy demeanor. I felt guilty for feeling relieved when I dropped him off at daycare and for enjoying time sitting in a quiet lab alone with my hands free. Every invitation from friend and family that required me to do something other than take care of our son, work, or sleep became overwhelming. I had no energy for anything else. Overwhelmed is a great way to describe how I felt that year.

Any physical pain from his abrupt motions and continual schedule were nothing compared to the emotional pain of not being able to help him. When I went back to the doctor at 6 months, they did a postpartum depression screening.  I answered how I thought I should. I look back now and see my shame that I wasn’t handling things well. At the time, I was afraid and unable to admit the truth to myself. At 10 months, I heard a woman from church talk about her struggles as a new mom. It finally gave me the courage to admit my need for help to my husband, and then to a doctor. I sobbed taking the depression survey and while explaining how poorly I was coping with sleep deprivation, stress of night feedings and daily life. The floodgates opened. I got help.

Much to be grateful for:

I was not alone, and neither are you. We all need support and help – don’t be ashamed to ask for it. My mom, sister and mother-in-law helped as much as they could. They drove across town countless times to bring food and to hold our son while praying over him so I could rest for a couple hours. He would often scream the whole time, refusing the pacifier and bottle. They did their best to soothe him. I am SO grateful for their help. He wore those loving arms out but they kept coming back

Our church small group blessed us with what I like to call ‘the parade of meals and encouragement’. Our close friends and family encouraged us, prayed for us, and were so gracious with me even though I was not able to be a good friend. They loved me anyway.

My husband did more squats than me and endured sleepless nights alongside me. Emotionally, he fared better than me and was my rock. He comforted, encouraged, and was unbelievably kind and gentle, even when I failed to be able to support him at all. We were a very tired mess but we were a team. I would have quit nursing if my husband hadn’t been my champion. If you support a mom who nurses ANY child, do not doubt that YOU play an important role!

God carried me through:

Psalm 63 became precious to me during that first year. My son’s name is written next to it in every Bible I own. I clung to these words in the middle of the night, calling out to my faithful Father on behalf of our son. HE was my ultimate help. The only way I made it through was by His grace and strength. Looking back, I see His good, strong hand carrying me through each and every night. He will carry you too, if you let Him.

You, God, are my God, earnestly I seek you; I thirst for you, my whole being longs for you, in a dry and parched land where there is no water.
I have seen you in the sanctuary and beheld your power and your glory.
Because your love is better than life, my lips will glorify you.
I will praise you as long as I live, and in your name I will lift up my hands.
I will be fully satisfied as with the richest of foods; with singing lips my mouth will praise you.
On my bed I remember you; I think of you through the watches of the night.
Because you are my help, I sing in the shadow of your wings.
I cling to you; your right hand upholds me.
Psalm 63:1-8 (NIV, emphasis added)

The JOY:

No matter how little we slept, the mornings were our son’s best moments of the day. It was certainly the time when reflux hurt the least. Smiles and giggles flowed freely for those precious moments. My husband and I often waited to enter his room together so no one would miss a second of that joy.  These moments gave us real, tangible hope.

There is no difficulty or number of sleepless nights that could ever steal our love for our son. He is a priceless gift. I cherish his first year, regardless of the struggle. He was the joy of my day and being his mom is a blessing that challenges me and brings more fulfillment and joy than I could have ever imagined. Because we all struggled, I think we felt the excitement of new skills and successes even more strongly.

Please do not take any of this post as a complaint. It isn’t. I do wish our son had not been in pain, but he was. Wishing it had been different serves no purpose. The experience is part of who we are, as individuals and as a family. And so much good came from it. We were strengthened and our relationships grew in beautiful ways as we weathered it together. It made us more reliant on God and deepened our trust and faith. It equipped us to share our experience with other families dealing with similar issues. I am amazed by the number of families we have been able to support and encourage because of our experience. These are not small blessings, and we do not take them for granted. And, we are grateful our son, now 5, no longer struggles with reflux. There is hope yours won’t either.

 

Infant Silent Reflux is NOT Silent – Our Experience Navigating Reflux Treatment

Infant Silent Reflux is NOT Silent - Our Experience Navigating Reflux Treatment | thisgratefulmama.com

This is the second post in a series on Infant Silent Reflux. Before reading this, it will be helpful to read about Our Search For An Answer To Our Baby’s Cries, which explains what Silent Reflux is, and our path to diagnosis.

The only thing I’ll repeat from the previous post is this – Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurting.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

Doctors diagnosed our son with silent reflux at 7 weeks. The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

Once diagnosed, the first treatment step was medication. We started Zantac (Ranitidine).  A clear, strongly peppermint flavored liquid that made me sure he would hate peppermint forever. Every dose was a battle – it was almost impossible to get him to swallow it, no matter how many times I blew on his face or how loud he cried.

We saw mediocre results. With painful reflux symptoms causing all night crying from day 1, and treatment not beginning until week 7, it was like throwing a bucket of water on a forest fire. He still had all the same symptoms mentioned in the previous post but the medication seemed to take the edge off and feedings were a little more manageable at night. At least, for a little while – Zantac dosage and effectiveness is weight-dependent, so after a couple of weeks, it stopped working because he was growing so fast.

Our doctor recommended changing my diet to see if we saw additional improvement. I kept a food journal. I stopped eating all dairy (yogurt, cheese, milk, you name it), and anything citrus or acidic (tomatoes, oranges, berries, peppers, etc.). We saw what we thought to be limited and gradual improvement, but when I tried to add these foods back into my diet, he got worse. It was clear that my diet, dairy especially, mattered. So, I refrained from eating quite a few things for a year. I learned later that dairy takes a very long time to leave your system and even longer to leave theirs. If dairy is adding to the symptoms, you may not see marked improvement for a month. If you suspect it – cut it for 4 weeks and then see what happens when you add it back in.

A quick note about Zantac before continuing: Most of your stories will end with Zantac: A couple of years later when our daughter showed symptoms of reflux at 4 weeks, we knew exactly what it was. We took her in right away and the doctor agreed. She was on Zantac a short time, and it was enough to allow healing and the muscles to tighten and prevent further damage. She has never struggled with reflux again and will be 2 in March. From the families we know who have struggled with reflux, very few children go on to need additional medication, and most are entirely off of all medication by the age of 6 months. Of approximately 30 families we’ve talked to so far, I know of only 4 who have continued medication through 1 year, and know of only two other families whose children have had reflux as a toddler like our son.

I wish I could say that Zantac and modifying our diet was the end of our son’s story with reflux, but it isn’t. We continued monitoring my diet and increasing his Zantac dose as needed until the week before I had to go back to work (11 weeks).

Then things got crazy.

The reflux was out-of-control. The crying was unstoppable. The Zantac dose was maxed out. They wanted to switch him to Prilosec suspension (Omeprazole). We weren’t real excited about giving him more medicine since the first didn’t seem to help much. The doctor explained that while Zantac is a histimine-2 blocker, Prilosec is a proton-pump inhibitor. Both reduce acid produced by the stomach, but through different mechanisms in the body. In our doctor’s words, if a person doesn’t respond to Zantac, they often respond better to Prilosec. It gave us hope and we were willing to give it a shot.

The medicine tasted like chalk (so, of course, he didn’t like it). He was supposed to improve measurably after one week on the medication.

He did not.

My first week back to work, my husband and our family took turns watching him during the day. Our son wore those loving arms (and backs) out! He was supposed to start daycare the following week…now what? We were terrified to leave him with someone else, and terrified for the provider who would have not only him, but a handful of other children needing her attention. There was no way a daycare provider would be able to handle him along with the other children in her care.

We took him back to the doctor. He had an upper GI. As he choked down the barium, it was confirmed he had reflux but no physical twist, turn, or abnormality requiring surgery. Good news, but there was no indication as to WHY he had reflux. But, knowing reflux was present validated the reason we were pumping him full of the max dose of reflux medication.

On the way home from the upper GI, I refilled his Omeprazole prescription. I was shocked when given a completely different looking liquid, with different labeling than the last bottle; same medication name, but different consistency, color, and storage conditions. It still tasted like chalk, but the new bottle worked far better. Right away.

The daytime became manageable.

I took the remainder of the first bottle and the new bottle back to the pharmacy and spoke with a pharmacist. They admitted the first bottle should have had the same labeling as the new bottle, but would not admit it was made incorrectly. Honestly, to this day I have no idea if it was even the right medication in the bottle or not. I now ask plenty of questions when I pick up medication at the pharmacy – there is no guarantee the medication you receive is correct (how scary is that?).

We switched pharmacies and filed a complaint at both the local and corporate level.

At 13 weeks, our son went to daycare. We were blessed beyond measure by an experienced, patient and kind woman. He was loved, well cared for, and she never complained that he was difficult.  Not once. No words can ever express my gratitude to her for how she cared for him. She would tell me, in a matter-of-fact-way how he had done each day, never with any indication that she was burdened by him when he had a rough day. And he had plenty of rough days.

Although the Omeprazole, correctly made, worked leaps and bounds better than that first bottle, we noticed that towards the end of every bottle, our son’s symptoms were worse. Then, every time we opened a fresh bottle, the medication seemed to work better. After tracking it closely, it seemed like our 30 day supply worked great for 2 weeks, then gradually decreased in effectiveness over the next 2 weeks.

As a biochemist, I am familiar with stability testing. I suspected a stability issue and asked the (new) pharmacist about it. She said it should be stable, but if he was on the edge of the dosage, we might see a gradual decrease over time. She was willing to break our prescription into two, as an experiment. We paid up front for a full 30 day supply, but she gave us half of the volume. 15 days later, we then picked up a freshly prepared bottle, with the remaining volume from the 30 day prescription.

Breaking the 30 day supply of Omeprazole into two fresh bottles showed measurable improvement. We know of at least 4 other families who have seen symptoms increase over the course of a 30 day bottle who have also switched to a 15 day supply. While our evidence of a stability problem is purely anecdotal, it has helped more than just our child. Our pharmacist could not continue breaking it into two because of billing issues since the prescription was written for 30 days. She suggested we get a 15 day supply prescription from the doctor. We were happy to pay double the co-pays for mediation that actually worked well the whole time.

And so we continued on. While the days were going well, night-time was another story. From 8 pm until morning, it was hard. I’ll describe the nights in a post dedicated to sleep in coming weeks. In the meantime, if you are a sleep deprived parent of a hurting child, my heart goes out to you. I wrote a post when thinking about you, months ago. Sleep deprivation is serious business. You are not alone. Sleep did eventually come to our house. It will come to yours as well. Bless you.

While sleep eluded us for a long time, our son’s symptoms did gradually decrease over the course of the first year. Even though he didn’t sleep much at night, he screamed less and less, and with decreasing intensity as time went on. By 12 months, he slept through the night for the first time, and by 15 months we were able to wean him off of the medication and he eventually slept through the night.

Why was our son’s case so severe? I’ve asked several pediatricians, an allergist and a Gastroenterologist. No one knows for sure. But there are a few things they all agreed may have contributed:

  1. He had symptoms from day 1, which we learned is highly unusual. In fact, most doctors say babies don’t even have stomach acid at that point. I don’t know what this means, other than his case is different from others
  2. There were dietary issues we knew contributed (dairy, citrus), but there were more that we didn’t know about. At 15 months, we discovered an unknown peanut and cashew allergy (and he had a mama who was eating bucket loads of nuts and peanut butter while avoiding dairy while nursing…sigh…knowledge truly can be power)
  3. Since he had symptoms early but was growing fast (not failing to ‘thrive’), the doctors failed to treat the pain early, and we failed to persist in making them treat him
  4. He grew so fast and was treated so late, it seemed like we were always behind the proper dose of Zantac for his weight. It just wasn’t enough
  5. The Omeprazole first given to our son at 11 weeks was certainly stored improperly (room temperature vs. required refrigerated conditions that likely affected stability), and possibly made incorrectly to begin with. This means our son was basically un-medicated (or at least improperly medicated) at the point when his symptoms had peaked, requiring Omeprazole to be prescribed in the first place. I am convinced this snafu caused additional damage and lengthened his recovery. Add in the apparent stability issues with the 30 day supply and it wasn’t until 6 months before he was treated with full strength Omeprazole on a consistent basis.

Look for future posts that will describe our experiences with toddler reflux and reflux sleep (or lack-of). Also read about my personal experience nursing and caring for our son during his first year.

If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.