I wanted to be a mum more than anything else in the world. So that was the plan… meet a boy, get married and have a baby (or two!). I actually thought I’d be really good at it, but over the last 21 months I have considered myself wrong countless times.
I had a wonderful pregnancy without too many hiccups (on that note, Alexander was full of them; he had them about 4 times a day while in utero). I followed all the rules, ate really well, didn’t drink much caffeine or any alcohol, didn’t put on a stack of weight, didn’t dye my hair or wear perfume. I can honestly say that I think I did all the right things!
When I was 8 months pregnant my mum had a cerebral haemorrhage, which led the doctors to find a massive brain aneurism; within 24 hours she was in emergency brain surgery. They did a craniotomy and clamped the aneurism (she has made a full recovery). While mum was in surgery I was in the hospital waiting room with my family, cursing the hospital chairs for giving me such a bad back ache. It took me about 7 hours to figure out I was in labour (no tummy contractions, all back contractions, which was not what I expected). So off I went to the delivery suite and 10 hours later I had my baby boy.
Alexander was born a month early, thankfully in the same hospital as mum (easy visiting for the whole family!). Unfortunately he was hypoglycaemic and therefore too tired to feed, so on day one he ended up in Special Care Nursery where he stayed for 10 days. He was fed via nasal gastric tube, both formula and expressed breast milk (once it came in). He was allowed to leave once he could have sucking feeds around the clock, and we were lucky that didn’t take too long.
For 5 weeks Alexander ‘slept like a baby’. He was so tired I had to wake him up for feeds (he really needed to gain some weight having been born at 2.65kg); he would sometimes sleep for 5 hours straight during the day. This time was bliss and I felt very confident and happy about my new found motherhood. I was made for this!
At the 5-6 week mark Alexander started ‘catnapping’, he would only sleep for 40 minutes at a time and it was impossible to resettle him. He would pull his legs up to his chest, go red in the face, cry and grunt. We used to get him to sleep by holding his knees into his chest and gently bouncing them in and out. That only worked for a little while.
My husband went to a one day cricket game and all hell broke loose. It was an unfortunate coincidence, and I paced the floor with Alexander for 5 hours straight. I had no idea what was wrong and was confused as to why it was going on for so long…. I’d never heard of a 5 hour ‘witching hour’, was having a baby really going to be like this? This was the first thing that made me start doubting my abilities as a mother; my confidence was officially on the way down.
I rang a helpline for mothers with unsettled babies hoping that someone could shed some light on why my son only slept for 40 minutes at a time, I was told ‘some babies don’t need much sleep, some babies are just like that’. I really started to worry, at the back of my mind I knew something was wrong, but on the other hand, my confidence was dwindling and it didn’t take much for me to start doubting myself more.
At around 6-7 weeks an early childhood nurse actually suggested he might have ‘a bit of reflux’ and that I could prop the bassinette up and give him 2ml of Mylanta (antacid) when he woke up screaming to see if it helped. We tried this, it didn’t help, and so we immediately dismissed reflux and blamed ‘wind’.
I was lucky that my husband had 8 weeks off work to share the joy, frustration and sleepless days and nights. The first day he went back to work I had dread in the pit of my stomach. How the hell was I going to take care of this baby?
Alexander got worse and worse, and I became more and more distressed. I was completely overwhelmed and felt like being a mum wasn’t right for me after all. I mean I was totally crap at it! I couldn’t deal with my miserable, screaming, ‘normal’ baby. I couldn’t make him follow sleep routines, or teach him to stay asleep once he was. I would call my husband in tears and text him things like ‘I can’t do this’, he thought I was overreacting and would get annoyed with me. At this stage Alexander was far worse during the day than at night, so he really hadn’t seen the full extent of screaming and discomfort he was exhibiting. Still, it wasn’t a good time, and made me feel even more like I was just not cut out to be a mum.
I organised for a Karitane nurse to come to our house and observe Alexander’s behaviour and teach me the ins and outs of settling him. She was actually impressed with me and thought I was doing a good job reading his tired signs and putting him to bed, and when it came to resettling him after one sleep cycle she gave me some great tips. When she left I felt a bit more in control, like I could actually do it, you know be a mum and take care of my baby.
It didn’t work.
When Alexander was 3.5 months old my sister told me a story about a friend’s baby who was unsettled like Alexander, but when she eliminated dairy from her diet he started to improve. By this stage we were completely exhausted and I was willing to do anything to help my miserable little boy. I spoke to our Paediatrician over the phone, and when I told him Alexander had ‘slightly improved’ when I eliminated dairy he advised that 50% of babies who have issues with dairy also have issues with soy. So I eliminated soy too. The combination of stress, sleep deprivation and failing to eat a decent amount of food (I was too tired to eat to be honest, and I had no idea what to eat being too exhausted to figure it out!) led to me losing my milk and so our Paediatrician prescribed Pepti-Junior; this again, slightly improved things.
I rang Karitane every day in tears, until finally they referred me to the residential unit at the hospital, and got me in on a cancellation the following week. Three nights and four days at the hospital, with people to help me sort out my baby. Woohoo! I learned some great things there, particularly different cries and what they mean. However things weren’t going so well and on the last night, finally, the lovely night nurse said ‘he’s gulping acid in the cot, he has silent reflux’. Silent Reflux! Ah ha! Finally an answer, let’s get this sorted!
Our Paediatrician put Alexander on Zantac three times a day; he started sleeping almost immediately, night and day. It was nothing short of a miracle…. a six week miracle. Then it stopped.
This is when we started Dr shopping, Alexander’s Paediatrician was always away and we needed someone who was more accessible. Unfortunately what we experienced doctor after doctor was being asked if we were ‘first time parents’ and maybe he ‘just wanted a cuddle’ in the middle of the night. Needless to say it was a heartbreaking and frustrating process, being made to feel as though we were overreacting as ‘all babies cry’.
At around 8 months we were still living in hell and were so lucky that our GP went into bat for us, getting us in to see a Paediatric Gastroenterologist and quickly (Alexander was refusing food and liquids, having 20mls a day at his worst). Our appointment answered all of our questions. We found out that Alexander had a redundant colon (a long and kinked bowel), it was causing constipation which made his reflux worse. To add fuel to the fire he also had allergic colitis, an inflamed bowel, because the prescription formula he was on just didn’t cut it; it wasn’t broken down enough. So his meds were changed (for the fourth time), he was given Neocate and we added Osmolax into the mix to help the bowel issue.
Alexander refused the Neocate (and Elecare) we did everything to try and make it more palatable (golden syrup, sugar, vanilla essence, gripe water, 50/50 with Pepti Junior, 90/10 with Pepti Junior.. I’m sure you get it by now) so from the age of 8 months until 1 year old Alexander drank rice milk. Not as nutritious as he needed but better than nothing, and certainly better than allergic colitis.
Over the next few months we did soy and dairy trials, finally having a win when Alexander was 11 months old and could have yoghurt. Hooray! Then came butter, cheese and cow’s milk, and eventually soy. It was a big relief to see something finally improve.
When Alexander was 17 months he was worse than ever, all nighters were both standard and expected; we were totally exhausted. So we went back to our Paediatric Gastroenterologist, and he prescribed a motility drug as he suspected that Alexander had slow motility (so his dinner was sitting in his stomach and causing him to reflux when he went to bed). This combined with his PPI and laxative worked like magic, and for the first time in over a year we all slept soundly at night. The transformation was amazing, bye bye tantrums, all nighters, clinginess, tears and screaming; hello happy little boy. He also shot up, growing 6cm in 8 weeks and gaining a couple of kilos.
We had two months of bliss which unfortunately has ended. We are currently trying our hardest to get his bowel under control again. A combination of croup, chest infections, low grade asthma and gastro resulted in him not having enough fluids; leading to a build up in his bowel – he is in more pain than ever. I have learnt very quickly not to get too complacent or think the worst is over, because when you do suddenly it all comes crashing down.
Alexander has had it with doctors, after seeing countless paediatricians, a paediatric gastroenterologist, a paediatric allergist, a respiratory paediatrician, a paediatric cardiologist and a paediatric dietician… well I can understand why. I am so thankful his current doctors are brilliant and are dedicated to helping him get better.
And I couldn’t have survived the last 21 months without my husband. He is a brilliant father and a wonderful husband. And soooooo patient!
So after all of that I do have hope, and every day we do everything we can to make him more comfortable and try to get him back to the healthy, confident, cheeky boy that we know he is. I’m sure we will get there eventually.
Part 2
29 months and we are still going. Alexander is no longer on the motility medication because it gave him night terrors, thankfully when we stopped giving it to him it didn’t seem to cause any problems with motility (and the night terrors went away!). We just make sure he finishes eating well before bed time to give his food as much time as possible to go down.
At 25 months we were really looking forward to our first happy and relaxed Christmas, but in true Alexander style all hell broke loose on Christmas Day. He came down with a virus called Roseola (characterised by high temperatures for five days, then the fever breaks and a rash comes out). We weren’t able to keep his temperature below 39.5 degrees with paracetamol, so the Dr at Sydney Children’s Hospital advised us to give him Nurofen. Little did we know that was it was a ‘necessary evil’. It kept his temperature down but that wasn’t all it did.
For weeks after we were dealing with the bowel related aftermath of the high temperatures, hot weather and the dehydration experienced while sick. We followed all of the necessary steps to help him but what we didn’t realise was that he was also in pain, with what we now know was likely to have been ulcers in his stomach or oesophagus caused by the Nurofen.
After visiting and speaking with our Paediatric Gastroenterologist we increased Alexander’s medication significantly and added another one into 
the mix. It was obvious that it helped him but at the same time there were countless sleepless nights, tantrums and he wasn’t eating much; less than usual in fact. That’s when his Doctor decided to do an Endoscopy and Flexible Sigmoidoscopy.
So, we finally know that the reason that Alexander refluxes is because he has a sliding hiatial hernia. The biopsy results showed oesophagitis (inflammation of the oesophagus) which proves that he has a reason to be unhappy (considering he is on medication and there is still inflammation). Blood tests showed iron deficiency, which is not surprising considering months of food refusal.
Right now I can say we have the right mix happening, the right balance of medication and supplements and Alexander is a happy, cheeky little boy. I’m very excited about that!
After many ups and downs I’m sure there are many more to come. What I now know is that it’s important to enjoy the good times, not to be surprised when things are bad, and to do whatever I can until they are good again.
Lauren is a member of the RISA Executive team and general all round contributor to keeping the place running. She can be contacted on our forums.