Reflux – an understated illness

I’ve been quite vocal about Charlottes reflux issues, but I don’t think many realised the severity of the situation and where we were sitting as parents with an inconsolable child.

Well meaning friends and family shared so many well intended tips, suggestions and solutions which worked for them.  The problem with having a preemie though is that while she is pint sized perfection personified, she is for all intents and purposes, a high needs baby with an incredibly fragile system. What gets put in needs to be carefully monitored and approved by her specialist paediatrician.  We’ve dealt with her reflux from day one, learning what works and does not work for her, in some parts we succeeded, in others we failed, through no fault of our own mind you, she just had all the cards stacked against her.  Her condition was far worse than we initially realised and progressively got worse as time went on,  her warning cues to us were misinterpreted as hunger cues, sleep cues, sleep refusal, over stimulation. My previous post gives a little insight into the emotional impact this had had on us

Dad has chronic silent reflux issues and preemies are more likely to get reflux as a result of their underdeveloped systems, there already you have 2 smoking barrels aimed at an unsuspecting victim.  Combined with her reflux was stomach cramps, and while I still don’t entirely understand the cause of these, we’ve managed to all but eliminate them for the time being by a change in medication and formula.

A dairy intolerance can also aggravate reflux in a baby and while Charlotte is technically too young to develop allergies, it is also entirely possible that she has. She is a medical enigma essentially, there are no totally accurate charts to mark her development, in some aspects she is ahead of where she should be, in others she may be behind, we take it one day at a time.

The long and short is that over the last two weeks we have been tormented by the fact that our child became consistantly inconsolable and withdrawn. Until she got to the point where she screamed more than she slept and in her final attempt of gaining attention she stopped drinking completely.  Now don’t for a second think we sat back idly while this went down, I’m sure her paed was sick and tired of my daily phone calls, but prescriptions need to be issued and given time to take effect and when those don’t work you proceed forward to the next protocol. We’d have a day or two of reprieve and a false hope that we’d found solutions and then we’d be back to square one. We were consulting daily with her paed and she had visits every second day from her physio to try help us massage and relieve some of the tension that had built up in her tiny little body.  Nothing was working.

On Tuesday I’d scheduled another appointment to see her paed as she was no longer drinking anything, I was concerned about dehydration and weight loss and quite honestly at breaking point. The long and short was that we were admitted for observation immediately. Our stay here has had it’s moments, I broke on the second night, completely and utterly, I could no longer live and breath knowing how much pain my child was in, something needed to be done to ease her pain, I was done being reasonable and understanding of standard medical practice, I now wanted miracles and drastic interventions.

NG tube and mittens, an essential for mouse as she is famous in NICU for pulling out her lines and when mom took them off for a moment last night she ripped her line out in defiance.

I won’t got into specifics and bore everyone, but we are working on a new formula and treatment course and from the very first bottle on the new plan Charlotte drank, a remarkable feat since we had no choice but to insert an NG tube on admission to get her fluids in.  She’s been drinking ever since and with any luck we should be going home tonight or tomorrow after one or two more test results come in.

Dealing with her reflux has been anything but easy and unless you are or have dealt with it yourself I doubt you can fully comprehend just how it affects daily life. There have been days where I’ve not even been able to step away to use the toilet, brush my teeth or even prepare a cup of coffee. Days where I had to give her to dad and walk away, terrified that I would snap and harm her just to stop her screaming, which made my feelings of failing as a mother even worse. Hours have been spent walking through the streets in an attempt to console and soothe her with fresh air and the feeling of movement, and FYI these walks can and have occured in the middle of the night. Something little like a car seat will change her from comfortable to being visibly uncomfortable as the pressure of the seatbelt on her stomach pushes acid up, the chances of getting to your destination vomit and scream free are slim to none.  Visiting friends is not even a consideration as you have no idea from one feed to the next if she is going to have an episode or not and in the back of your mind you can see everyone judging the bad mother who can’t console her baby or get it to stop crying. Everything has spitup on it, everything, your hair, your clothes, her clothes, your bedding, your skin, there is a never ending cycle of vomit laundry to wash and get dry before she runs out of clean goods.

Hopefully we are on the road to a long term solution that keeps my child relaxed, comfortable, happy and gives her the opportunity to grow and develop as she should.  There is no worse pain in the world than that of a childs that you are unable to take away.

NG Tube out and Resting with mommy

If you are a reflux mommy or daddy I’d love to hear from you.  xxx

3 Replies to “Reflux – an understated illness”

  1. Hi Karin

    I’ve been following your blog posts with so much respect and empathy for you. My husband is one of Robert’s friends and I remember when I heard you were pregnant, we were due round about the same date in August. It really goes to show how each mommy’s pregnancy journey differs…your early bird arriving way ahead of schedule! And mine not wanting to leave the nest without a gentle shove (induction).

    Nevertheless, my little one also suffers from reflux…just like Charlotte. And I can understand where you are coming from when you try and feed your baby and the milk you give makes her throat burn and pull the saddest of faces. It really is heart-breaking. So while I know my “struggles” are nowhere near as intense as yours, I can find comfort in the fact that no matter preemie or full term, reflux is one of those things that sometimes we just have no control over. All one can hope for is a daily improvement, no matter how small 🙂

    1. Hi Michelle

      Thank you! It is so hard to see them in pain and uncomfortable and you are quite correct in saying that reflux is something that affects both preemies and full termers, it really is heartbreaking to see them suffer when they are still so little and new to the world. It really does help to hear from other mommies as my circle of friends all were fortunate enough to experience perfect pregnancies and babies with no issues so don’t fully comprehend the impact this has on our ability to continue with our normal lives, something which we swore we’d not change drastically when/if a baby came along, but, babies have their own plans 🙂
      Have a fantastic week ahead and I hope your little one is feeling well as well. xxx

  2. so sorry to hear about your struggles. It is indeed the most heartbreaking thing when your child is suffering and you feel helpless to A0understand the cause and b) fix it once you do know. I am a reflux granny, my youngest grandson was born without the valve from stomach to esophagus , and has reflux issues. My poor daughter has also tried all the conventional advice, sleep upright, avoid sugars and starches, eat several smaller meals, etc but still has to struggle daily with juggling whether he must go on Nexium, which is not safe long-term, or the reflux, and has to keep monitoring when to put him on and when to take him off. He catches bugs so easily with his raw throat, so needed to be home-schooled last year to stay away from infection and catch up with all he had missed. At some point he will need surgery to build a valve, but the longer you can wait the better the chance of success. He is still only 6, but it is amazing she has got him this far.So my heart goes out to you guys, and if you have any tips you find to work along the way, I look forward to seeing them. All the best, and don’t worry about being judged, anyone who judges a frantic new mom does not deserve to have their opinion respected anyway!

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