The story of A

A was born two weeks early weighing in at only 2.5 kg. In rather stark contrast to my first birth experience with N, my little Pisces was born quickly but relatively calmly in the water. It was a completely natural birth with no drugs or interventions. She latched on to the breast just fine in the hospital and we were sent home the next day.

Within 48 hours at home my nipples were cracked and bleeding. A was very sleepy so the midwife who visited us at home suggested I express for 24 hours to rest my nipples and feed her the expressed milk in a bottle. That way we could ensure she was getting enough to eat (my first baby N couldn’t latch on at all and she really struggled to gain weight so we were paranoid about it happening again with A). We commenced ‘Operation Pork Chop’ to try and ensure she gained weight, and also to ensure I maximised my milk supply. This involved epic pumping sessions and following each breastfeed with a bottle, offering A as much as she could take.

I very quickly resorted to nipple shields because I couldn’t breastfeed without excruciating pain. The shields worked a treat (I used them with N to help her to attach so I was quite used to them), and it seemed like A was getting enough milk that I could stop expressing and bottle feeding.

While she was feeding, A would make these little clicking sounds that at the time I just put down to the shields not forming an adequate seal. I had probably also increased my supply too much with all that furious pumping and ended up with quite an overactive letdown to contend with.

By two weeks of age A had turned into the screamy baby from hell. She was constantly spitting up, she wouldn’t sleep for more than 10 minute stretches at a time (all day and all night) and even then only if held in an upright position on someone’s chest. She just screamed and screamed and screamed all day and all night. Her weight started to plateau. She started to get rashes. I went and saw my doctor who told me all babies cry and that she seemed fine and it would pass.

What is this screaming thing you've brought home!?

What is this screaming thing you’ve brought home!?

At 3 weeks I went and saw an osteopath who did some cranio-sacral therapy and suggested cutting out dairy, which I did but it didn’t seem to help.

At 4 weeks I went and saw a different doctor and got a prescription for Zantac (Ranitidine). It made a difference, but didn’t completely transform her. Giving it to her was awful – she absolutely hated the stuff and I felt really sick giving it to her.

At 5 weeks we upped the dose and then again at 6 weeks because the dosage is weight dependent. At 6 weeks I saw a community nurse who suggested that A might have a posterior tongue tie which might be causing her reflux. I went and saw a third doctor who said ‘no tongue tie! look at how she sticks her tongue out’ and gave me a script for Losec instead. I tried the Losec that night and within 48 hours she was So. Much. Worse. I threw the Losec away!

I turned to the internet for advice. I found a forum that helped me so much I can never repay the women on that board. It was here that I learned about tongue ties, lip ties, reflux and food intolerances. I read and read and read and finally at 12 weeks sought the help of an IBCLC (specialist lactation consultant) in Sydney, Dale Hansson. She took one look at A and said ‘oh my goodness, this baby has one of the worst tongue ties I’ve ever seen, not to mention that epic maxillary lip tie. No wonder she has reflux!’ The doctor who works with her, Dr Tony Nigro, clipped A’s tongue tie and lip tie and it was pretty traumatising. There was so much blood. We didn’t notice a huge difference and I still had to use nipple shields. (NB: At this point I realised that N has a tongue tie too, but no one ever noticed or suggested it despite 10 months of desperately seeking help to breastfeed. I didn’t even know what a tongue tie was!)

A started getting heaps of mucous in her poos so I started an elimination diet. I did the Royal Prince Alfred Hospital Failsafe Diet. For two weeks I ate nothing but lamb, potatoes, pears and rice. By the end of the two weeks I was nearly insane with hunger but I had a beautiful peaceful baby who slept. I wasn’t sure if it was the diet or the tongue tie clip so I threw in the towel and went back to eating everything except dairy. Big mistake. A seemed to get even worse!

I had been waiting months to get in to see a paediatrician, only to be told that A was ‘allergic to my breast milk’ and that I should immediately wean her off the breast onto Neocate (an amino acid formula that is completely hypoallergenic, but also smells like dog food and tastes like chlorine). I sank into a deep depression and felt like a total failure. Again. I never really got over not being able to breastfeed N ‘properly’, so I didn’t take this diagnosis very well.

I decided before trying Neocate I would go down the elimination diet path again but instead of doing the full on Failsafe diet this time I would just cut out the top 8 allergens: dairy, soy, wheat, egg, nuts and peanuts, fish and shellfish, and sesame. Within two weeks she became more settled, but we were still having trouble with her latch and she still wouldn’t lay flat on her back without screaming.

At 4 months I went back to Dale and got A’s ties clipped a second time. This time I noticed a huge difference. She was able to latch deeply, I was able to lie her down on her back without her screaming, and within two months after the revision I had weaned her off the nipple shields.

I started to reintroduce the eliminated foods into my diet one week at a time, starting with nuts because I was absolutely starving. All went well until I got to wheat and then we had a massive recurrence of mucous in the poos, rashes around the mouth and chin and waking up constantly throughout the night. I took it out for two weeks and then tried introducing a different food. The same thing happened with dairy, soy and egg respectively.

At 5 months I saw a different paediatrician in Canberra who was wonderful. Dr Paul Jenkins is a paediatric gastroenterologist and he told me the best thing for reflux babes is breast milk because it helps their oesophagus and gut to heal. He also said that new research has come out showing the long-term detrimental side effects of Proton Pump Inhibitors like Losec, so doctors and paediatricians are being strongly advised not to prescribe them except in extreme cases where babies don’t respond to dietary changes (in the mother, or in the formula). Dr Jenkins referred me to a dietician to help with my diet and to help with the introduction of solids into A’s diet.

At 6 months we started solids. Being familiar with the GAPS diet I decided to start with homemade chicken stock from the bones and skin of an organic chicken, which A absolutely loved. It’s full of really good nutrients and vitamins, plus healthy fats. We then moved on to pumpkin, swede, potato, and carrot in that order. All went well. We only offered one food every 7 days to ensure there was no reaction. She reacted to every single fruit I gave her except pear, so we kept on with vegetables and then started to introduce meats like lamb and chicken. As she got older she started to tolerate more and more solids. I kept a food diary. I kept my diet strictly clean of the four things I had identified so that I could establish whether any reactions she was having were to the food I was giving her directly.

All throughout this period we had torturous trips to the community health clinic or the doctor to weigh A and ensure that she was still growing, but at 6 months we definitely turned a corner. She started to get a little chubby, her sleep really settled, her happy smiling personality started to shine through.

I’m still breastfeeding at 17 months but we’re down to only one breastfeed, usually at some ungodly hour of the morning.

Some of the things we’ve tried for easing her discomfort that seemed to work quite well include: probiotics, digestive enzymes, slippery elm and Iberogast. We saw an osteopath for craniosacral therapy several times and she slept beautifully for several days after each visit but I just couldn’t afford to keep up the appointments.

The elimination diet is hard and living on a restricted diet is hard. Family and friends don’t really understand and you have to be particularly organised to ensure you’re not starving all the time – not easy with a toddler and a baby. I lost 20 kilos! But it’s totally worth it if you can do it. Breast milk is really so good for babies. I’ve been both a bottle feeding mum and a breast feeding mum so I completely understand and sympathise with both. Bottle feeders absolutely should not be demonised. However, I know which method of feeding I prefer now that I’ve had the chance to do both, and I’m glad I stuck it out for as long as I did.

Finally, I’m not going to lie – some days it’s still incredibly hard. A’s an appalling sleeper, unlike her sister, and there are still many, many nights where I think ‘what did she eat!?’ But it seems that reflux and spirited babies go hand in hand and some babies just aren’t good sleepers, reflux notwithstanding.

I’ve also been reading up some more on tongue and lip ties and I really think I need to get A assessed by a dentist who specialises in laser revisions of tongue and lip ties.

I will keep posting further reading and resources on a variety of topics, including reflux, tongue and lip ties (including information on the MTHFR gene mutation and midline defects) and food intolerances so make sure to check back!




7 thoughts on “The story of A

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  6. i can’t believe no one diagnosed your daughters tongue ties. In the UK it is something we check within 72 hrs of birth and then check again every time we meet the baby for the first few weeks (just in case someone else hasn’t noticed it). It is so common, and although it doesn’t always interfere with breastfeeding (it can even interfere with bottle feeding too) if it does then we recommend getting them snipped. Also any reports of breastfeeding issues (mainly latching and painful nipples) makes you think ?tongue tie.

    • Hello beautiful Kim!! Thank you for reading. I know it’s incredible but practitioners who revise tongue ties here are demonised. There was a doctor at the hospital who used to do it for newborns as a routine procedure but he received so much hate mail from other doctors that now he only does it rarely and only after a referral from the hospital’s lactation consultant. My midwives were all, unfortunately, completely ignorant about TT and ULT. It’s an emerging field here in Australia 😦

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