Gemma’s Story

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I’d like to share my experiences

My daughter was born in June, she’s now 3 months old. Having had a wonderful pregnancy (not even morning sickness), I also went on to have an amazing birthing experience, my daughter came out in water happily.
As I had intended to breastfeed, the initial few days were okay although I found that my nipples were extremely sore and I felt that the latch wasn’t correct. I requested help from the local midwives who came around to assist with the latching. Once proper milk had kicked in, my daughter would be very finicky and fidgety on the breast, in spite of my best efforts, she simply wouldn’t latch correctly and when she did latch on, she wouldn’t stay on beyond 5-10 mins.
I was advised that babies usually lose less than 10% of their birth weight in the initial week and are then expected to regain that by week 3. Unfortunately, my daughter did not regain the birth weight within this timeline and during the midwife visit, I was advised that I should be topping up with formula as the breastfeeding is not lasting for a long enough period. The other worrying thing was that my daughter would last without a feed or rather refuse to feed in shorter intervals, she’d go without for a minimum of 3.5 hours.
All my reading advised me that breastfed babies generally feed every 2 hours. In the evenings, my daughter would start to cry, with symptoms very much like colic. Given the midwife advice, we topped up formula and by week 3, she would spit up after every feed. Initially, it didn’t bother me too much as I thought that this was perhaps excess that she had consumed, however the amount of spit up started to increase and alongside that her feeding became more and more erratic. By this stage, I had given up the hope of getting her to properly breastfeed and my last resort was to contact a lactation consultant to assist.
The consultant advised me that my daughter had a tongue-tie (60%) and that was the cause of not breastfeeding easily. After the tongue tie was snipped, I was assured that she would start to feed much better on the breast.
Unfortunately, this did not happen and as I wanted to breastfeed or at least be able to give her breast-milk I started to express. The spit-ups became a regular feature and I started to dread feeding times as I would spend hours on end trying to coax my daughter into drinking milk only to have her vomit a large amount of the feed. I started doing research on the internet and that is when I came across articles on reflux and I felt that my daughter’s symptoms were exactly that.

 

Our GP prescribed gaviscon

However that didn’t help at all, in fact it caused constipation and so we stopped that completely. Finally, we took our daughter to the hospital where my husband works and the paediatrician prescribed domperidone and ranitidine. We were also advised to see a specialist for allergy related testing. At the visit with the specialist, we were advised that our daughter had cow milk protein allergy. We were prescribed a special formula (Pregestimil initially and then Pepti-Junior).  I was asked to eliminate dairy/soy/egg from my diet as I was expressing milk. We were then prescribed additional medication – omaprazol, nalcrom and ketortifin. The special formula smells awful, has to be used within an hour of making and tastes bitter…needless to say, my daughter hasn’t taken to it well.

My daughter is now 14 weeks old, and my days revolve around monitoring her feeding. There are days when she will simply refuse to feed for 8 hours at a stretch, there is no feeding schedule, no consistent amount of milk per feed, her fingers are constantly in her mouth and so it’s hard to know when she is hungry vs when she’s not.
After a feed, we hold her upright for 30 minutes but if she has to spit up, she will and no amount of holding upright or keeping her on a wedge is going to stop her. Her weight gain remains on the 25th percentile but every week I am filled with dread as to whether she has gained at least the minimum weight of 120gms. The specialist advised us that we have to look at it objectively in that she’s gaining weight and that’s what should really matter even if she’s medically classified as being ‘thin’.
I am filled with guilt that I haven’t been able to exclusively breastfeed, and all the literature out there talks about formula fed babies not being as intelligent or as immune to diseases etc. I am able to express 400mls of breastmilk everyday but that’s not enough. My daughter doesn’t drink as much milk as she’s supposed to for her weight (based on the calculation she should be having 800mls a day…she barely averages 650mls a day).
There’s also the comparison factor, friends with babies born around the same time, other babies I see at yoga class etc. who are so much bigger in size and mine looks scrawny and tiny in comparison. My emotions run from end of the spectrum to the other. It’s hard to stay rational when there’s an emotional attachment to getting my baby to drink the expressed breast-milk and then watching part of this liquid gold (expressed breast-milk) being vomited. I try to put my daughter on tummy time everyday but she seems to hate it and cries! There is so much pressure on babies reaching milestones!

 

Words cannot describe how awful I feel, what I thought would be a wonderful experience of bonding with my child and seeing her grow has turned out to be a nightmare. I don’t know how long or how soon it will take for my daughter to outgrow her allergies and for her immune system to build up so that she stops vomiting her feed and begins to settle, and for that matter whether she will ever outgrow her allergies. As I want to continue giving breast-milk, my time is spent in expressing (my nipples will soon lose sensation with the gruesome expressing schedule) and when I am not expressing  then I am trying to cajole my daughter into feeding and if I am not doing any of that then I am worrying about her weight gain, whether she’s reaching her milestones, whether I’ll be able to return to work in December with some peace of mind as she’ll have to go to nursery.

My journey with having a reflux baby continues…

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About Author

Jonathan

As well as being one of the founding members of refluxSUPPORT...Jonathan is a Board Member and trustee of Living with Reflux – the only UK Charity for infants with reflux related conditions.He is also a stakeholder in the National Institute for Health and Care Excellence (NICE) – Gastro-oesophageal reflux in children and young people.He has three daughters of which the eldest is now seventeen. Two suffered from severe reflux.