This is the second post in my series about living with uncontrolled Infant Acid Reflux (Read my first post Stolen Joy to find out about the condition, how it developed and where our journey began).
After the initial newborn months, we entered the stage when most parents begin to regain some level of normality. While other parents’ Facebook albums grew with pictures of their adorable munchkins asleep on their playmats or fun family days out, these photo opportunities simply didn’t exist for us. Instead, while battling my huge pang of jealousy, I found myself using social media as an outlet for my despair and frustration, along with desperate pleas for help. These feelings were greater than any shame or embarrassment and I was beyond caring about the inevitable judgement of others.
I broke every rule in the book in a desperate attempt to keep my girl settled for as long as possible by sleeping her next to my bed in the car seat or cradling her on the sofa with her head deeply buried in my arm (Please don’t ever do this!). I would do anything to allow both of us to catch a few minutes of sleep. And that’s literally all it was – minutes. She would soon wake gagging and bubbling at the mouth.
I recall such relief when at one stage her pain seemed to ease for a time and she was able to settle in the bed with me in between feeds every two hours. Even then she wriggled, cried and fed her way through the night, propped up on pillows (Note: I do not advocate the use of pillows with a baby). Only weeks later her pain had returned with a vengeance and my bed became redundant once again while I resorted to pushing her around downstairs in the stroller.
But it didn’t matter how or where she slept – within minutes she woke again. No amount of pain relief, rocking or feeding could change that. She fed frequently and frantically for comfort to ease her distress, only to push away again writhing in pain. If she did fall asleep she would soon wake with an ear piercing shriek as if she had been prodded with a pin.
Longest Nights of My Life
Her short periods of sleep were usually in my arms, while standing by the kitchen sink with the tap running – this being the only thing that brought her occasional relief from the distress. Night after night, alone in the darkness of the kitchen with my strength failing as each hour slowly passed, I felt like I was losing my mind – listening to the screams and the running water against the steel sink. She would forcefully rub her heels together, push away from me, frantically trying to climb up my body. My neck and chest scratched to pieces from all her clawing. Night after night as our daughter screamed in my arms, I cried with her. I cried out to God for help, healing and strength.
People have asked me how I knew she was in pain but I didn’t need to play guessing games. I know of adults with heartburn who describe it like a heart attack. I certainly recall swigging the Gaviscon like it was going out of fashion during pregnancy. Something only mamas of reflux babies will truly understand is that your baby isn’t crying because they are simply ‘upset’. They are hurting. This is a very different cry. It’s an ‘emotionally disturbed’ shrieking. It’s heart-breaking and gut wrenching, especially when they are not even able to tell you how to relieve their distress.
And sometimes you do the natural thing that your body is programmed to do – panic! I cannot tell you how many times I packed those hospital bags when my daughter was having episodes of near constant reflux – gulping, swallowing and drooling and those wide saucer eyes, like she had ingested amphetamines. I was torn between the desperation for someone to help my poor child and the knowledge that even if we somehow got her to the hospital there was absolutely nothing anyone could do.
No Chance of Respite
She would often get pain while out in the car or buggy – I felt helpless, standing by the roadside or river clutching her knowing that no amount of feeding, rocking or soothing would take the pain away. Seeing her in pain or discomfort became the norm. No easier to deal with but the norm, nonetheless. I didn’t blink an eye during her vaccinations. This isn’t pain, I thought. Not real pain.
The sleep deprivation was akin to torture for both my daughter and I alike. I could have fallen asleep standing up or handed her to the nearest stranger just to grab forty winks. It fluctuated between this and the other extremity when given half a chance to sleep I simply couldn’t, particularly when my body was on high alert to respond quickly to my screaming or choking child.
Even when somebody took my baby out and I had the rare luxury of collapsing into the bed for an hour, I found myself clinging to bumps in the duvet on the edge of the bed thinking they were her. I would even frantically remove ‘her’ from pillowcases believing she was suffocating. Crazy you might think? Yep. That’s exactly what this sort of thing does to you – it sends you mad.
Sacrificing my physical and mental health for the sake of my child felt only natural. Night after night I had little or no sleep at all (this is no figure of speech – I actually regularly had NO sleep. Not. One. Minute) and I began to truly worship it. I became so obsessed with it that every minute of every day and night I lived for the next moment I could grab some. I found myself googling things like ‘Can you die from sleep deprivation?’ And yes – you can.
Every day I kept my daughter moving as if my life depended on it. I would drive like a maniac, cursing every red light and if she fell asleep, not stopping until she woke. Sometimes left with no option but to run the risk of waking her by pulling over in a lay-by or car park to rest my heavy eyes for a few minutes – not able to keep them open for a second longer.
Come rain or shine I walked her along the streets daily, clocking up mile after mile. I’d often be blinded by tears of exhaustion and despair. My body and mind so broken I was literally losing the will to live.
I cannot find the words to express the physical and emotional torture – a word I don’t use lightly. It literally was torture. And this battle you face when misguided people think you have to be depressed to want things to end. They try to change you. YOU are the problem. YOU need to take happy pills so you can cope with your baby better. No – I’m not the problem. I’m not frickin depressed. I’m tormented because my baby is in pain and I can’t help her. I’m physically, mentally and emotionally exhausted. I’m tired to my bones.
I have nothing left.
Read more about living with acid reflux in my following posts:
It’s not just Reflux – it’s our Lives
For help and support: Babies With Reflux and Silent Reflux – a Facebook group which has been a lifeline to me and Living With Reflux – the UK’s national charity website.
Mamma Me and my girl 