I think I can honestly say I’ve been ‘clucky’ since I was about 12. That’s not to say that I had an intention of being a teen mum or anything, just that in the same way some little girls have their dream wedding all planned out, I knew very early on how I wanted the nursery decorated, and how it would ‘be’ when I finally got to marry my prince and start my family.

Jess & JaxonFast forward 17 years (longer than I had planned, but I guess that’s just how things go), and it is finally TIME. Now comes the first knock to my wonderful dream of motherhood: it takes almost a year to get pregnant, and I almost go crazy in the process wondering what is wrong with me? I have waited so long, when do I get to have my perfect little bundle? But it finally happens, and I am elated, I can’t wait for the next 9 months to pass. I do everything by the book: no alcohol, I don’t smoke or drink coffee anyway so no problem there, no ‘high-risk’ foods (bit harder, as I love sushi and the deli!), but overall had a great pregnancy. I remember thinking that the 4 or 5 bouts of hiccups my little “Fred” had every day were cute, if only I knew then….

I had been a bit concerned about going into labour, as my mum’s labour with me was very fast and intense – she found it quite distressing as each stage progressed before she had time to get used to it, culminating in me being pulled out by forceps in a rush at the end because they lost my heartbeat. I had been having quite strong Braxton’s Hicks contractions from about 26 weeks, and in the last couple of weeks of my pregnancy they were especially frequent at night. So I had been up watching TV as usual for a few hours before I realised that it was actually in labour, and unfortunately for me I was to follow in my mothers footsteps.

I had hired a TENS machine, but whether it just was never going to cut it for me, or if it was just too late by the time I realised we were go for launch I’ll never know, but I had it cranked to the max but with continual rolling contractions it just wasn’t doing a thing. I can look back now and laugh at how we must have looked, hubby driving to the hospital in record time (lucky it was 2:30am and he could follow a sirens blaring ambulance heading to the same place!) with me on all fours in the back seat clinging on to the already installed baby capsule and trying not to die.

I had to stop twice along the 50m walk (or waddle) from the car to the birthing suite, so you can imagine my horror when the midwife had a check and told me I was only 3cm dilated! She was struggling to monitor Jaxon’s heartbeat, so she broke my waters and attached a scalp monitor. Now things started getting serious, Jaxon’s heart rate was plummeting with each contraction (which were basically continual), and an hour later I was still only at 5cm, so they took us in for an emergency c-section. Oh the joy once the spinal kicked in! Unfortunately my relief was short lived, as a killer headache soon followed, as well as nausea once they gave me something to get rid of the headache… (which didn’t).

Anyway, 6 hours of labour later, I finally hear that first cry, and a few moments after that, a groin is held next to my face and I discover I am now a mum to a beautiful little boy.

So now our beautiful story starts, right? Well, not quite. Not long after being born Jaxon passes meconium, and ends up in a mess of black goo, so the midwife and Daddy take him into recovery to get him cleaned up and nice and warm, ready for me who should be out of surgery a few moments later.

Unfortunately, I have a bleeder the surgeons can’t quite get to stop so they have to wait for a specialist to come in, and I end up lying there for ages, with a massive headache, and no baby or husband. The anesthetist did his best to keep me amused, looking up celebrities that were born on this day etc, however the whole experience was so traumatizing for me that when I finally got into recovery and got to hold my little boy I just burst into tears.

The first encounter of “this is not how it was meant to be”.

I had packed a dummy in my hospital bag ‘just in case’, and by the second night it was popped firmly in Jaxon’s mouth. I don’t know if it was a sign of things to come, or if he was just calling in my milk like the books talk about, but I had spent the entire evening with him feeding for 5 or 10 minutes, falling asleep at the breast, and then waking 10 minutes later and only settling when put back on the boob. We had been doing this for hours, until at 2am I finally gave up and pulled the dummy out, gave it to Jaxon and we then got some sleep.

Other than this, I would say the first 3 weeks were ‘normal’. My milk came in, Jaxon fed, pooped, and slept like any newborn. Then the unsettledness came. It was mainly following a feed, where he seemed to have trouble bringing up wind. He would pull his little legs up and cry and cry. He had started cat napping by now, and would wake with the smallest of noises. My mother had come over for 3 weeks to help out, and it was at this point that she looked at me with sadness and said, “it looks like he has colic”. As a baby I had ‘colic’ until I was 5 months old. I have heard all the stories over the years, my mother just about went crazy because the doctors all told her I would outgrow it by the time I was 3 months. Talking about it with her now, it sounds like I had silent reflux as well, so sorry Jaxon, guess we know where it came from.

I also had an oversupply issue, and Jaxon was making clucking noises while he fed and taking in a lot of air, so off we went to a Lactation Consultant, thinking that this was the cause of his problems with wind and his unhappiness. The LC gave us some great tips, and after watching him during and after feeding, she actually mentioned that he might be a “bit refluxy”.

We then went to our GP to find out what could be done about this thing called reflux, and he was very quick to assure us that all babies have some level of reflux, because the valve that closes over the top of the stomach isn’t fully grown until 12 weeks. He said that if we were worried we could go down the medication route, but he was sure it would just come right on its own. So we decided to wait it out.

By 8 weeks things were getting worse. He was now vomiting EVERYWHERE and it smelt really strongly of acid. He hardly slept during the day, but was sleeping pretty well at night, I think from sheer exhaustion. My Google searches about the cat napping only resulted in it just being normal for some babies, and that’ s just how it would be. We went back to the doctor who suggested trying Infant Gaviscon, but again just seemed to think that this was perfectly normal (because of course Jaxon was perfectly happy in his office, so we must be over-reacting) and would get better in a few weeks.

We tried the Gaviscon, and it did help a little. However things were now rapidly going downhill. I would spend the whole day while hubby was at work holding Jaxon. He would just crack it if I put him down. At the most he would have two 20 minute naps during the day, at which times I would fly around the house trying to shower, do dishes and washing (oh the amount of washing!!). He was harder to settle at night, and was gradually sleeping in shorter blocks through the night. Feeding was also getting worse and worse, I was feeding every 2 – 3 hours, and that would involve Jaxon latching on, pushing against my chest and pulling back as far as he could until he would finally pull off the nipple and have to re-attach again. This would repeat for about a maximum of 5 minutes until he would get frustrated and would start crying, or on the rare occasions that he was exhausted he would fall asleep. So neither of us was enjoying feeding.

I had basically become a recluse, as I was sick of people telling me to get rid of the dummy, that we were spoiling him by holding him all the time, he had us wrapped around his little fingers etc etc. Plus he screamed blue murder if I put him in the pram or in the car seat so it was too hard to go anywhere anyway. I was at the point where a good day was one where I didn’t cry at some point (usually in the shower or in the lounge at night while trying to get him to sleep and not disturb hubby who had work the next day). Once hubby got home from work I would have an extra pair of hands, but Jaxon was very clingy for me. I couldn’t leave his line of sight or he would start screaming, so if I was preparing dinner hubby would have to stand right next to me holding Jaxon, while I went as fast as I could to get it done and take him back again. He was also now feeding hourly from around 4pm until bedtime, and crying in between. Jaxon actually lost his voice a few times, from screaming so much, and the only thing more heartbreaking than listening to your little baby screaming is hearing them not be able to scream, because they have already screamed that much.

I have no family in Australia, and all of my friends were working, and all had great babies anyway. I tried joining an ABA mothers group, but none of the mothers there had a baby like mine and when I tried to explain what he was like they would just smile and nod their heads, with nothing to say. I felt a complete failure as a mother, a role I thought I had been born to fulfill. Friends and neighbours had an idea that we were doing it tough, but instead of coming over with offers of help they thought the best thing they could do was to leave us alone and not intrude. I felt completely alone. My mum understood, but she was in a different country so couldn’t do much. I don’t even think my husband really got it, even though he saw what the nights were like, and admitted that some times when he pulled into the garage he would sit there wishing he could drive off again. He didn’t seem to ‘like’ Jaxon all that much at that stage, which I guess is understandable when your baby doesn’t want you to hold him and screams all the time. But it added another layer of stress on me, when I was already close to breaking point. I was on the internet whenever I got the chance (Jaxon seemed to dislike the computer and wouldn’t let me sit at it) trying to find answers, but unfortunately didn’t come across RISA until later.

Again, “this is not how it was meant to be”. I felt unbelievable grief. I had wanted this baby for so long, everyone else had these beautiful happy babies and mine just cried all the time. I felt like I had been so completely cheated out of my dream, and then would instantly feel guilty because at least I had a baby, where others could not, or had lost their babies, or had babies with far more serious problems.

Finally when he was 11 weeks old, I sent out a desperate plea for help through Facebook to all of my female friends with children. I described how he fed, the not sleeping, and all the crying.

This is when my angel appeared.

A friend that I had worked with before moving to Australia replied to me saying that Jaxon has silent reflux, that he is in pain with a burnt out throat and that I needed to get him back to the doctor and on medication asap. Her daughter had silent reflux and was on Losec until she was 1 year old.

We went back to the doctor and he gave us a script for Losec suspension, as well as a referral to a pediatrician. I was so happy to finally know what the problem was and to have a plan of action. Unfortunately though, in the time it took for the Losec to start working, Jaxon reached his limit and refused to feed. I was devastated. I tried different rooms, different positions, tricking him with his dummy, but he just screamed and screamed. Luckily, after a couple of days of expressing and feeding him by bottle I was able to start getting him back on the breast, but it was very tentative and stressful, and it would only take the littlest thing to go wrong (like a slow letdown) and it would be all off again. I think it was my own stubbornness that kept me going. I kept saying “one more week/month” and if it doesn’t get better I will change to formula. However I was terrified of making the change to formula, losing my milk, and then finding he still had the feeding problems anyway. So I persevered. And looking back now I am so proud of myself that I kept going.

Then finally, finally, the Losec started to work, and things improved. I remember the first good day, when Jaxon fed like a normal baby. He nestled in close, mouth full of boob, little hand up on my chest, and ate for a full 10 minutes. I cried and cried in sheer happiness. Finally I had the perfect breastfeeding picture that you see on the TV and in all the books. All that perseverance was paying off. My angel friend put me on to RISA’s New Zealand counterpart, Crying Over Spilt Milk, and from there I found RISA. I was so happy to have finally found a group of people who knew exactly what we were going through. I made good use of the forums and very quickly felt myself climbing back from the depths I had been in through the love and support that I received from the wonderful RISA members.

Unfortunately, it was not to last, and by the time we saw the pediatrician it was obvious that a meds increase was needed. By this time I was an expert on reflux from RISA’s site, and I was concerned that the Losec suspension was losing its effectiveness and planned to ask to switch to the tablets. The pediatrician confirmed that we were dealing with silent reflux, and along with a dosage increase he also told us to start giving him pain relief and Mylanta. This was great, as it confirmed what I had been feeling all along, and finally my husband ‘got it’. The pediatrician also suggested eliminating dairy and soy from my diet, but he wanted us to keep going with the suspension rather than giving us the tablets.

Again we saw an improvement, and for a time we had a happy little boy who was an absolute joy, and who now was happy enough to leave my side and get to know his father. It was the best time in our life as a family. He even started having hour-long naps during the day! But again, he started to go downhill and I was convinced that the suspension was not lasting, so we went back to the doctor to ask for the tablets. He flat out refused to give them to us, said he had never heard of anyone having problems with the suspension, that we couldn’t give a tablet to a baby, and when I explained about dissolving the tablet in water and giving with a syringe he told me that I would not be able to administer the dosage correctly (this to a scientist who regularly has to weigh out precise amounts of chemicals!). His solution was to ask the pharmacy to give us a 2-week batch of suspension instead of the 4-week amount, which the pharmacy could not do. So we went doctor shopping. I was very lucky in that we live very close to another RISA member, who at the time was the Librarian and I had met her when she came over to drop off some books. I knew her daughter was on the Losec tablets so I asked her what doctor she went to, made an appointment, and we haven’t looked back. They have always been awesome, they would agree with dosage increases when I thought we needed them (which would be when sleep went out the window and the arching feeds and refusal would start again).

Jaxon also had a lot of problems with food intolerances. It wasn’t until he was about 10 months old that he could tolerate anything more than the teaspoon of pear puree twice a day that we were using to give him his Losec. Under the pediatricians advice I had cut out dairy and soy, and as a result had lost a lot of weight because it just got too hard to find foods that I could eat that wouldn’t upset him. Thankfully by the time he was about 7 months I could eat dairy again, I would just avoid huge amounts of it, like milkshakes or ice cream. Jaxon was still feeding very frequently, even waking every 2 hours during the night. Again, we copped more criticism about our parenting, but I believed that he was feeding so much because he was hungry, and unlike normal babies he wasn’t filling up on solids because he couldn’t tolerate them.

We decided to have a Naming Ceremony for Jaxon when he was 9 months old. By this time we had the reflux mostly under control, and I really felt that we needed a kind of ‘cleansing’, and a chance to start over. It was a beautiful day, exactly what I had hoped for. While things still weren’t perfect, they had certainly come a long way from where they had been.

We are also one of the lucky ones. We were able to wean Jaxon off the Losec not long after his first birthday and at 18 months he can now eat everything. He has the occasional flare associated with teething and illness, but so far they have been short lived and able to be controlled with paracetamol.

I can now happily report that I am a truly blessed Mumma to the most gorgeous and amazing little boy, who lights up my life every day. A part of me fears that reflux will rear its ugly head again, but I know that I have the strength to fight it again, either with Jaxon or with another baby if I am lucky enough to have one.

As soon as I joined RISA I knew that when the time was right I would give back and try and repay some of the love and support I received when I so desperately needed it. I still tear up thinking about those bad days and think that if I can help stop even one family from getting to that place it will all be worth it.

Jess D is RISA’s treasurer and member of both the Executive Team and Advocacy Committee.

Jess can be contacted on the RISA forums. Username: sunshinefred