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

My Experience Nursing and Caring for Our Hurting Son During His First Year | thisgratefulmama.com

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.

 

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

  1. I needed this – my daughter suffers from silent reflux and because she “doesn’t spit up much” or “all babies reflux some”, people don’t believe how seriously she hurts and the overwhelm I feel, or why I often turn people down for get togethers, as they think that the baby will just sleep in the car, sleep wherever – NO! She doesn’t sleep wherever, in fact she is hyper sensitive to things around her and so if I do something: go to church, go to lunch with her, go over to someone’s house, she’s wide awake the entire time and ends up being awake for way too long, sometimes 8 hours. My life revolves around her feeding and napping, and my mother and mother in law especially don’t understand it and why I focus so much on it. In fact, my mom told me it’s good for me to wear her out so she’ll sleep better at night. Let me tell you that is the worst advice ever and I’ve never tried to follow it!

    Currently we’re on Zantac, but I tried switching to Prevacid this past weekend, thinking her symptoms were creeping back and she kept vomiting up the Zantac, but that showed me just how under control we had it. It was horrific. She got insomnia and couldn’t eat or nap without an hour of screaming after each feed. Her smiles were gone, just suffering in its place. When I finally abandoned the Prevacid and gave her Zantac, the relief on her face was so palpable. She didn’t even fight me on it like she usually does – she gulped it down as welcome relief.

    You feel so guilty trying to help and not being able to, and when you make the wrong medication choice, like I did this weekend, the guilt you feel is 10x worse.

    Anyway, I pray constantly and I know that if He brings me to it, He will bring me through it, but sometimes I lose sight. It is helpeful to read blogs like this, to know it is completely normal for me to feel this way. Thank you so much.

    • Michelle, than you for sharing your story. I am sorry your daughter has reflux and I DO understand your struggles! With family, just keep being open and truly explain what the problems are. Our son never slept in a public space until he had pneumonia and fell asleep in the doctors office on my chest. Not once did he sleep in church, a family function, etc. Then we’d get home and he would cry even worse and we’d have a terrible night. SOME events were worth it, but many were not. I’m not sure if Prevacid is like Omeprazole (Prilosec), but it took 1 week in his system to see any improvement. I wonder if the doctor could tell you if you could do Previcid for a while WITH the Zantac to see if it really works?
      God will bring you through this, and when you come out the other side you WILL see His goodnes through it all. He is building you up and strengthening you even if you don’t feel it now. Prayers for your daughter and for you.

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  4. Your post hit home for me. Our second daughter had/has silent reflux, too. The first months were the hardest, as she was so uncomfortable, she hardly slept and feedings were a struggle. I cut out so many foods, we tried medication, we held her upright for hours, we did so much! Finally, she’s turned the corner. She now sits up and her reflux is under control. And she’s never been happier! I’m so glad those hard, hard, hard days are behind us.

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    • We did not use encounter but with Prevacid we did experience things getting worse first. Two things: first, there is a bit of an acid battle with the stomach and meds when you start. It could be that the body just needs to adjust. Second, it could be the dose is too low. It took two weeks to see what the ‘new normal’ was. I’d call your doctor now to share what is going on, and if they don’t want to do anything wait a week or so. If you don’t see improvement, go back for increased dose or different medicine. I’m sorry your little one is struggling. Hang in there. You guys will figure this out together!

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