Wednesday 19 June 2019

"Your babies have an eating disorder"

"Your babies having an eating disorder" ...Yes, that’s the words that the speech and language therapist said to me, when she carried out a home visit when the boys were 10 months old. 

I'm writing this post to reassure any parent that might be going through the same things we did. Whilst we were in the NICU the boys were in their words "sicky" but were adamant that they would be fine. A day before we were released, they removed their NG tubes and switched them to bottles. 

Of course when we got home and they were on monitors laying on their tummies things went from bad to worse. They were projectile vomiting EVERYWHERE. Going through 8 plus outfits each a day. Muslins everywhere. I was pumping like crazy to try and put back what was coming out, and they literally cried every minute of the day. They would sleep around 3 hours in every 24 (obviously not together)! It was utter hell. 

At 6 weeks old my mum knew Gav and I were at breaking point. She took them overnight with the outlook that she just wouldn't sleep. Of course I still set an alarm to pump, but it was glorious! I woke to an email from my mum deeply apologising. She wrote that she had no idea it was THAT bad. She explained that after having 3 children and being a childminder for many years, it wasn't normal. She couldn't believe that I had mentally and physically coped with them on my own whilst Gavin worked nights etc.

The idea started to be thrown around by the doctors that they had a milk allergy. At that point I decided to give up on expressing. I literally felt like I should cut of the middle men and throw my liquid gold on the floor, bed, sofa.... By the time I'd pumped, refrigerated it, cleaned and sterilised the machine, I'd need to feed one twin (which took 45 mins for 45mls, plus winding). Then I'd need to feed the second twin (another 45 mins plus winding). Then the process would start all over again. 

My health visitor was amazing, and she realised that we were struggling and continued doing home visits rather than sending us to the clinic. She advised that she was powerless with meds, and we needed to speak to a doctor. My mum came with me, and instead of listening to me he offered me antidepressants. I was furious! He then suggested they had a dairy allergy and gave us a prescription for Nutramigen.  My health visitor visited the following day to weigh the boys (they weren't gaining) and went crazy. She left and went straight down to my doctors surgery. She wanted them on Omeprazole ASAP. We got an appointment and we were given Gaviscon. It barely made a difference. Her next visit came around and she went crazy. She told us the only option we had would be to sit in A&E. I was desperate, so thats exactly what we did. They took bloods, and urine samples. They eventually prescribed Erythromycin, and sent us on our way. The health visitor came over and went bonkers. I didn't know, but it's antibiotics. She explained that premature babies are so susceptible to infection, that taking it when it wasn't necessary was ridiculous. She pushed for an expedited Paeds referral, which we got. She started the boys on a CMPA milk (Neonate), along Carobel. Carobel works like a thickener to keep the milk down.  Almost instantly we noticed an improvement. Of course I still didn't know what "normal" was, so they would still puke up, just not quite as much. 

When they were around 5 months I mentioned to the doctor that the colic symptoms still hadn't subsided, and nighttimes were horrendous. They prescribed us with Gaviscon again. Again we noticed not an improvement to their colic, but the sickness reduced a little more again, so continued using it. They wouldn't do tummy time, roll over etc, as they were clearly uncomfortable.

At 6 months we tried weaning. We thought that because purees were thicker than milk that the sick would stop, but instead it got so much worse. We were then advised to switch to BLW. They would hold a cucumber stick, and as soon as it touched their tongue, puke would be everywhere. I'd have to clearly carry the highchair tray to the sink and pour the sick away. At that point I started keeping a food diary. It became so frustrating. One spoonful of puree, and that plus the milk from the prior feed would come back up. 

We battled on for a couple more months, and the boys starting refusing food. At 9.5 months old I decided to mention it to them at clinic. Every health professional (except my health visitor) has made me feel like such a drama queen. One doctor said "you say projectile? Do you think they could hit my door 3 meters away?" Because they always suffered the same, everyone thought I was just not coping. This time I decided to imply Harry was worse. They sent round a speech therapist within a couple of days to review me. Yes ME! They thought I was showing my frustration and Harry was picking up on it. 

She arrived and almost instantly stood in one of the many wet puke marks on the floor. I obviously apologised, and pointed them all out to her to keep away from. She was really nice, and asked me to feed them. Checked for tongue ties etc. She then starting to quiz me. I completely unloaded on her. She then stopped writing and said those words "well your babies have eating disorders". I initially panicked. What had I done? But then she explained about learnt behaviours. She said that weaning products tend to be pureed apple, banana, tomato based. She then said, can you imagine eating something and within a short space of time bringing it back up? She said the acid alone would be enough to put you off. I'd obviously told her about the improvement with Carobel and Gaviscon, and she then proceeded to tell me that the level of sick she'd witnessed was not an improvement. I could only say from where we were, to that point it was better. She told me that she was going to get us referred back to Pads urgently. We were also allocated a nurse to carry out regular home visits for the boys sleeping issues etc. As I kept explaining over and over. They aren't awake because they want a cuddle. They didn't even open their eyes. They would scream in agony. Knees up, fists clenched. We'd have to try and get that trapped wind released, and comfort as much as we could. I took the decision to stop weaning until things were sorted. 

By fluke at 11 months we went to pick up their prescription of Gaviscon and there was a national shortage. I'd had a full meltdown with my parents. It was already bad enough with it. How would I cope without it? After calling everywhere in Hertfordshire, I contacted a GP. She was pretty shocked that we were on Gaviscon anyway, and said that it wasn't the 'usual mix' with Carobel. She told me to scrap both for now, and prescribed Ranitidine. When I got home, I googled it. Turns out that Gaviscon is also a thickener, so they were both doing it. They would've been creating HUGE tummy ache issues. Can you imagine wanting to be sick, and actually having two products keeping it down? 

Anyway RANITIDINE... IT WAS A MIRACLE DRUG. Day 2 of being on it... they only woke twice that night. Why hadn't we been given this before?  We then got the paeds referral through. I explained to him that the sickness had improved. He increased the dose, and organised allergy testing. 

At 13 months we began their weaning journey again. They were still having milk 8 times a day. We were dream feeding them at 10/11pm

Between 12 months - 20 months they seemed to pick up illness after illness. Chicken Pox, Rotavirus that lasted 12 weeks, ear infections leading to sepsis... It was bad. We have always said that they just weren't that interested in food.

At 28 months they both got very poorly, and Ollie began to look quite frail. I was genuinely quite concerned for him. His rib cage was horrible to look at. We changed our usual balanced approach for as full fat, calorie filled as possible. I started them with Angel Delight and Hot Chocolates, and went from there. I don't know what clicked, but then they started eating more. Now in the past we have joked, and after two days of good eating they would barely eat for a week. But this time they just kept on eating. 

They are still on Ranitidine and very much reliant on it. On Thursday 6th June Ollie Weighed 12kg and Harry Weighed 12.2kg. I know to most that's the weight of a child much younger, but for us its HUGE. LET THE EATING CONTINUE!

Anyway, to anyone who's battling with the "neurotic mum" label, please follow your gut and keep pushing. If I'd of pushed more, maybe we would have had a lot more sleep in that first year. 

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