This story is a member’s personal experience and opinion, and is part of their healing process. Please be aware that some of the stories on Crying Over Spilt Milk are of more severe or complicated cases of Gastric Reflux. Serious or complicated cases of Gastric Reflux are rare. If you think you may be disturbed by some content, please visit this page before deciding to read further: Infant Gastric Reflux Stories
Although I had a healthy full term pregnancy Kailey was born a small 5lb 8oz. Right from delivery she screamed and was very difficult to settle. She refused, fussed over or was too weak/ sleepy to breastfeed. A nipple shield helped slightly but nothing else we did made a difference. She started drastically loosing weight and had to be tube fed directly to the stomach for a couple of days. We were then able to move to finger lactation where she sucked my finger and a tube attached to it. Still she struggled screaming and having hiccups a lot. We had some success with gripe water initially. Some nurses told us she was naughty and we had to let her scream it out for 30 minutes and sleep would follow, but this didn’t work!!! At nine days old she was no better but we were sent home from hospital.
I continuously expressed my concern to both the midwife and later Plunket (though probably not strong enough at first being a new mum) but was told that crying was normal. This however was not just crying – Kailey would scream for hours on end, often all day long. No matter what we did sleep would only come by sheer exhaustion, often not until between 9.30 and 11pm, and then only for a short spell. To sleep Kailey had to be wrapped tightly, with dummy intact (a vital piece of equipment) and the bassinet inclined almost vertically. It would take many difficult to achieve burps for her to get rid of the endless wind she had. I would burp her before and after feeds, and every five minutes during feeding. Positioning her for feeding was very difficult, we had to get the attachment exactly right so to minimise air intake and as she was so small I needed two pillows for this. This process would often take two hours by which time it was nearly time to start again.
I determined through research we were likely dealing with colic and had some success with Weleda colic powder. I later found out she seemed to react to lactose in this. At 14 weeks Kailey improved dramatically and we had two weeks of bliss, before all hell broke lose. Her symptoms were now slightly different, and her tummy was even more bloated and rock hard, and the screaming intensified. More internet research and calls to the 0800 plunket line lead me to believe we had now moved on to silent reflux (or had probably been suffering this as well as colic all along). There was not much spilling but gagging and then swallowing evident by white gunk in her mouth. I gained a lot of ideas from this research and fiercely defended myself when the local plunket nurse claimed I had information overload. How was I supposed to try solutions to find the right one for us if I did not have this information in the first place!!
Living in rural Taranaki I found support very hard to come by and there is no family support centre here. We were rationed to one plunket visit a month – the sole nurse only servicing our local town one day a week. My hard working husband at first did not realise the seriousness of the situation. He would only have to tolerate the screams for short periods and did not see why I was such an emotional wreck. Our first Christmas was spent with my husband wearing earmuffs to shut out the ear piercing screams that rang inside your head.
We had a breakthrough after four months when I forced myself to attend a Parent Centre course. Afterwards whilst attempting a feed at the Plunket rooms a Karitane nurse heard the commotion and took the time to watch. This was the first time a health professional saw our situation firsthand. On her advice/ referral I went straight to the emergency GP who prescribed Gaviscon Infant. We used this for one week until teething commenced and it no longer worked. Kailey refused Omeprazole suspension, due to its bad taste1. We switched to Ranitidine which we were able to use as well as giving Gaviscon Infant after feeds.2 This helped some as long as the burping had been done satisfactorily. Often the only way to achieve sleep was to feed her to sleep, making sure to get the last burp out before deep sleep hit, or by rocking the pushchair.
An osteopath failed to help control the reflux. I commenced pushing furiously for a paediatrician appointment but the lack of hospital action over the holiday period made it very difficult to get anywhere even with an urgent referral. After a very grumpy phone call from a mum at her wits end, with no help in sight until the appointment now in three months, I received an appointment for two weeks time.
Meanwhile the five-month plunket weigh in showed Kailey had drastically lost a lot of weight since the four-month check (weight she could ill afford to lose being still so small). As parents we felt like we were failing in our job but as all our energy had been going into just surviving and minimising the screaming we had failed to notice the weight lose.
© Sheree, Mother and Member, Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust September 2008.