Day 1 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Looking after yourself…

Competition run from 31st May to 3rd June 2017 to win one of our cups.

Members were asked: Post the way you have looked after yourself whilst surviving infant/child gastric reflux.

  • I would get my husband to take the baby when he woke in the morning so I could get a few extra minutes of sleep before getting up for the day.
  • My first, I’m really not sure how I survived?! My second, an electric swing was our best friend, worked well for her, also had a much more helpful partner to take turns pacing the house.
  • I nap when ever I can. Screw the house work or jobs. Sleep is more important.
    Ive also had a few massages which help heaps when im so tired that I get angry easily.
    Also meal prep in advance for my lunches and snacks. It means i can just pull good food out easily while comforting my screaming child.
  • A cleaner, 2 hrs a fortnight makes such an amazing difference! Sitting in a clean house rocking a baby is so much nicer, and worth the investment for us 
  •  I decided it was completely fine that I stopped cleaning the house while we were struggling with this 
  • I’m loving the suggestions. It is 16 years since my girl with Gastric Reflux was a baby so how I coped is a bit of a blur. I had fantastic neighbours who would help out or visit. They were the third set of “grandparents”.
  • My first was attached to me her entire first year so not a lot of relaxing there! My second we bought a natures sway hammock which enabled me to put him down, Amazing! Plus having mother in law come and look after number one for a day, priceless 
  • I bought a nature sway hammock  So I could sit down with a coffee once in a while.
  • I had a gorgeous teenage girl who would come in three afternoons a week to help look after my older two, or she did errands for me, or I got a nap in.

Origin:https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1593381800703218

Day 2 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – At moments like these…

Competition run from 1st to 4th June 2017 to win one of our cups.

Members were asked: At moments like these…show us your humorous picture that depicts a reflux moment or share a short paragraph about a funny reflux event.

  • The kids learnt pretty quickly to move the fountain when it started. Fortunately only a little milk got on his face, his top was not so lucky 😂 
  • Thinking you might sit down and have a cup of tea. Must have been a bad day, didn’t get the milk in or the bag out!
  • Silent reflux is not so silent after all…….poor nana. Always happens when we make him laugh 😂 (Video included.)

Origin: https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1595125893862142

Day 4 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Support

Competition run from 3rd to 6th June 2017 to win one of our cups.

Members were asked to: Share a picture or moment of your support person (significant other/grandparent/friend/family member) who has been on this journey with you and your child.

  • Unfortunately my biggest support can’t have photos put on social but I love them anyway 💕
  • This is my husband and our kids. Before this photo our youngest had been crying non stop for hours. So hubby bundled us into the car and took us for a walk at the beach.
    Sometimes a change in environment can help not only your reflux child but also the parents and caregivers state too.

    • My biggest support is my husband. This is us trying to keep our little girl happy after she had a PEG inserted due to reflux being so severe that she wouldnt eat (reflux sucks!) He has been so amazing (dispite wanting to faint at even a conversation about anything medical 😂) and has adjusted amazingly to having a tubey baby. Very proud of him!
  • This is my husband who can always tell when I am being stretched too thin and steps up and looks after both of us. Anything from running us a bath to singing the pink panther tune on repeat for ages as it calms our son.
  • A lot of people have bad experiences with their health professionals but I always found my GPs, emergency drs and specialists to be kind and caring, and listen to me even when pressed for time. A little bit of support and encouragement and empathy goes a long way when you have a sick child and you’re stressed out. I have always felt so well looked after by the health professionals!

Origin:https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1598394456868619?comment_id=1598428073531924

(Some images removed.)

Day 3 #NationalInfantandChildGastricRefluxAwarenessWeek 2017 – Unhelpful suggestions/advice

Competition run from 2nd to 5th June 2017 to win one of our cups.

Members were asked to: Share the most unhelpful suggestion or piece of advice you were given about your infant/child with gastric reflux or associated condition.

  • To formula feed because my breast-milk was upsetting their tummy. 🙄
  • I had a Plunket nurse tell me that my daughter had such bad reflux because I had hyperemesis – as if I didn’t feel guilty enough.
  • One person told me if I just fed her cold boiled water when she cried then she would stop waking during the night. (She was 4 weeks old at this point, and had been in hospital for choking from reflux.) Also that instead of breastfeeding I should give her straight cows milk with formula in it because that’s how she did it💔 and most unhelpful suggestion was “reflux isn’t even real.  It wasn’t around when my babies were little.  It is made up to make an excuse for bad behaved babies who need to learn.
  • “Just feed him (breastfeed) like a mother should”. Hmm would if he would suckle. Severe oral aversion due to misdiagnosed reflux – thank you Mr GP.
  • “You just need to get some sleep to feel better and let him grow out of it”… Thanks GP who clearly has never had a baby, let alone one with reflux.

Origin: https://www.facebook.com/NationalInfantAndChildGastricRefluxAwarenessWeek/posts/1596364183738313

Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki

The Gastric Reflux Support Network NZ supplies brochures to Health Providers or other Services that support families coping with Gastric Reflux. This explains what Gastric Reflux is, a few simple tricks, the support GRSNNZ offers and our contact details.

We have just updated the brochures and are waiting on quotes for the next printing run.

The Trustees have decided to include a Maori translation or phrase on our brochure to show our commitment to the bicultural heritage of Aotearoa.

After seeking advice and a lot of discussion, we have decided on “Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki” which combines words from our mission statement and name.  This translates to “Support, Education and Empowerment for families and their children”.

Today, I have added this phrase to our website as well.

As we approach National Infant and Child Gastric Reflux Awareness Week from 31st May to 6th June, let’s think about how we can Support, Educate and Empower whānau.

Tautoko, Matauranga me te Whakamana i te whānau me ngā tamariki

PS:  Our brochures can be ordered using this form.

#NationalInfantandChildGastricRefluxAwarenessWeek 2015‬ – Tips on coping…

The following is created from a thread during National Infant and Child Gastric Reflux Awareness Week on our Facebook Page https://www.facebook.com/hashtag/nationalinfantandchildgastricrefluxawarenessweek

There were 38 comments with advice or tips on how parents coped with infants or children with gastric reflux and I’ve included some of these below:

  • Always have a cloth on hand when breastfeeding to stem the flow of milk when baby starts spluttering with reflux, and never look flustered when this happens in public or you may end up not going anywhere.
  • Forget all the things you said you would never do when you were a parent…..a reflux baby is a whole new ball game & you just need to do whatever works at the time. What works one day may not work the next so be prepared to follow what your baby needs at the time. Don’t listen to all the advice you are given by parents who haven’t had a reflux baby & be confident in yourself that YOU know your baby better than anyone else, & you need to do what works for you & your baby, not what worked for someone else
  • Remember there is no one correct way to treat or parent our infants and children with gastric reflux so remain flexible, but keep safety first.
  • When the screaming just seems to get too much, go for a walk and a cuddle with your little one even around the garden. Being trapped in the house with only the screaming in your ear is not good for the soul. At least outside there are distractions for both of you and the screaming is not so loud.
  • My children are four-and-a half and almost six. I did have to LOL at the question how did you cope. I still don’t know how I got through it. My children both had milk protein allergies so reflux was secondary. I had always said I would never use a dummy, but when my sonPACIFIER was about three days and had screamed since the second he was born, I was like please take the dummy. Had heaps of bibs; I had to layer three at a time and when feeding I would use a towel then layers of old style cloth nappies and have face cloths on hand. It’s really important to have support.  When my second child was two I discovered playcentre and I so wish I had known about it during that critical time when I struggled to get till lunch time let alone till the end of the day. I wish I had been at playcentre and had half a dozen people there who would love to hold my baby for me while I could just breathe and have a break. 
  • Cloth nappies are a necessity (and they aren’t for the bottom) and a pushchair is also not just a necessity but a life saver!!! When things get bad go for a walk; if they won’t sleep a foot pushing the pushchair wheel back and forwards at least gives you a little time to do something else with your hands!
  • My husband and I shared 15 minutes each of screaming, and on nice nights would walk outside with the baby so the person inside got a break. If husband not there, and you really need a break, ask someone else. People want to help when they see the pain for baby and you! Short time in their lives.
  • Remind yourself that this is not your baby’s personality. They are crying from discomfort and when things become better, which they will, you’ll see their delightful little personality shining through.
  • Ignore the other (mostly well-meaning) parents that say ‘oh yeah, reflux, my baby has that’ when you know for sure that they have no idea what they’re talking about.
  • To do whatever works. Relax your parenting ideas and learn to go with the flow. You’ll need to take babies lead a lot of the time rather than sticking to strict routines etc.
  • Invest in good front pack…they are filled with magical sleepydust!  Life saver for me.  Absolute lifesaver. Yes! (x 5 comments combined)
  • Oh, and invest in a bulk load of good carpet stain remover or your house will stink of vomit and curdled milk forever…
  • The use of a dummy. Life/sanity saver for us.
  • Feeding in the bath/shower helped me settle during the bad times.
  • Pick your battles. For example if you wanted to use cloth nappies, but things are too hard and you are putting too much pressure on yourself, just use disposables. Be kind to yourself.
  • It’s okay to ask for help and to accept the help.
  • Dairy free diet!
  • Determination.  Always think that you will get through to the other side. By this I mean fight for your child as you are their voice. This was what kept me going.
  • Remember it is not for forever.
  • Find something that make you smile or laugh at least once a day. A good comedy show for the bad days.
  • Bath Bub in a bucket (a cheap one works fine) so they are upright, nice and warm.  This was the only time my Bub was happy.  It seemed to help with any trapped wind.
  • A moby wrap for my youngest was a lifesaver for me. For my eldest it was being correctly diagnosed and prescribed medication that worked in her case. I must say, not to be afraid to ask for help and have some time just for yourself as reflux babies can be so draining.
  • Work out any intolerances, get support including for sleep, friends, family, home start, keep pestering for appointments with paediatricians, ask for any cancellations, go armed with information and nice guidelines to GP and paediatrician appointments, keep fighting, fresh air and walking, iPod with happy music to tone down the screams, helps calm you and then LO. This will pass! LO will not remember it (hopefully!)
  • Use a dummy / tv / medication as recommended and prescribed, whatever worked to help you and bub get through and don’t feel guilty. I wish someone had told me that.
  • Forget about any routine and just try to get through it as best as you can. Remember it won’t be this way forever and try to lower your expectations. Buy a sling and lots of muzzies x.
  • The importance of optimum burping and techniques to do so. Changed our lives!  Also my midwife constantly telling me I was a good Mum and that I was faced with these challenges because I was strong enough to overcome them.
  • Getting a front pack that keeps Bub in an upright position was one of the best moves we made! And of course getting proper treatment prescribed by the GP.
  • Prioritise something just for you, whether it’s a hot bath or a hot coffee sitting in the sun. It can be 10 minutes, but it helps you recharge your failing batteries to help care for your wee one. I know this sounds too hard, but try it if you are able to sneak it in.
  • Follow your gut instinct when you know things are not right. Keep going back to GP, no matter how many times until you feel your wee one is getting the help/support needed. And be kind to yourself.
  • Follow your instincts.
  • Dummy & referral to Paeditrician.
  • Ignore the know-it-all parents; just do what works for your baby.
  • Definitely wear your baby.
  • Wear your baby!!
  • I bought a foldable wipeable playmat and took it with me to friends houses so he could puke on that instead of the carpet! Lifesaver! I think they appreciated it too.
  • Babywearing!

Some comments have been edited.

© Gastric Reflux Support Network NZ Facebook Page Commenters and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust (GRSNNZ) June 2015.

#‎NationalInfantandChildGastricRefluxAwarenessWeek‬ 2015 – What Gastric Reflux Means

The following is created from a thread during National Infant and Child Gastric Reflux Awareness Week on our Facebook Page https://www.facebook.com/hashtag/nationalinfantandchildgastricrefluxawarenessweek

It included words or short phrases that had something to do with what gastric reflux meant for those who commented.  There were 70 comments which included:

  • BibsBibs
  • Sewing larger bibs
  • Overwhelming x 2
  • Communal puking anywhere, any time
  • Heartbreak
  • Agony
  • Exhaustion x 4
  • Made it through the other side
  • Missing cheese, being grateful for choice TV at 3 am, hard work
  • That black cloud of reflux
  • Open sores in mouth, head banging, weight loss, chronic cough, not enough sleep, paediatricians, A & E, stridor, wheeze, recurring ear infections and chest infections, no support, pain, desperation
  • Grieving for the happy baby we thought we would have
  • Washing x 2
  • Failure
  • Wasted breast milk
  • Frustration towards paediatricians, sleep deprivation, constant fear of SIDS
  • Stained carpet
  • Confusing
  • Frustrating x 6
  • Sleeplessness
  • Helplessness x 3
  • Torture x 2
  • Emotional
  • Information overload
  • CPR, isolation, financial ruin
  • Painful for everyone!
  • Endless cuddles
  • Grunting, dislikes normal food, medications
  • Drool
  • Ongoing ear problems (12 grommet operations at 8 years old)
  • People politely declining to hold your constantly held baby through fear of being vomited on
  • Arghh!!!
  • Fear
  • Screaming x 3
  • Tired toddler, not fair
  • Long haul
  • Nightmare
  • Crying (both of us) x 2
  • Lonely x 2
  • Traumatic
  • Staying in a darkened bedroom for 8 weeks and counting trying to “train” naps/sleeps by holding my baby at a sufficiently included position that he will stay asleep…only to find out I can’t cope with doing that for another year as it’s getting worse since 3 months old.  Pale and emotional wreckage.
  • Depression
  • Endless washing of tops
  • Sleeping upright
  • Feelings of anxiety
  • Isolating, spirit breaking
  • Heart-breaking
  • Emotional rollercoaster
  • Endless hours spent on the couch while she gets some sleep
  • Devastating and helpless
  • Relentless
  • Endurance
  • Let-down
  • Spill marks over clothes, always!

© Gastric Reflux Support Network NZ Facebook Page Commenters and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust (GRSNNZ) June 2015.