17 October 2016

Rohan's weaning journey


So I've been meaning to write about Rohan's weaning journey for a while now, but you know, time slips away and before you know it, its two months later...

I guess I should start with the Nasogastric (NG) tube, because that was such a major part of Rohan's care since he left hospital, and for us such a significant journey. He had a feeding tube in since the day he was born, even though he wasn't allowed to have any food actually go into his stomach. He had a tube in his mouth which then eventually got moved to his nose and there it stayed. He eventually was allowed to have small amounts of milk and we progressed from there. We tried to breastfeed, offering it to him before he was due his feeds, which were regulated and always at set times. But because he'd spent a good few weeks not using his suck or having anything by mouth I think he just didn't know what to do, or wasn't strong enough to do it on his own. So we eventually thought we should try and offer him the bottle too. He was having breastmilk still that I was expressing around the clock. The bottle was a little more successful and eventually I stopped trying to offer him the breast as much because getting him to take something orally, became the most important thing. We were working hard to not need the NG tube at all.




I then had to come to terms with the fact that Rohan wouldn't be breastfed. He was having breastmilk, just not directly from me. It was a tough realisation to come to terms with, I'd been looking forward to breastfeeding another baby, as I so enjoyed it the first time around. It was easy and I enjoyed the bond it gave me with Theo and he did well on it. But I know that Theo was entirely different and our situation was a little more straightforward, I never realised how fortunate we were for it all to go so smoothly. It was a definite grieving process, on top of the process I was already going through as we came to terms with the rest of Rohan's condition. It was yet another piece of our imagined future slipping away.


When we eventually were discharged from hospital we entered into a world of combined bottle feeding and NG feeds. Rohan was still doing well, and in fact getting better at taking some of his feeds orally, and I continued to express for a good month or two when we got home. For us even getting used to bottle feeding was a whole new world, let alone all that comes with having to tube feed. We had so much equipment that exploded into our house; boxes of syringes, tubes, ph testing strips, sterilising bags, a breast pump and all the attachments and the milk itself. With a freezer slowly being taken over with frozen milk that would soon become the last remainders of my milk as expressing became too much and my supply dwindled. I had to stop, it was a hard decision, but it was taking too much energy, taking too much time out of our day and just became a burden to us all. I fed Theo for 19 months, and Rohan had four. It didn't seem fair, but then none of this situation was fair.
So we stopped and instead he was fed on high calorie formula milk.


We had to navigate the world of feeding out and about, to get over the fear of people looking at my tiny baby with tubes and plasters stuck all over his face. I wasn't a new mum, I'd done the whole baby thing before, but this all felt so alien. I was out of my depth and it took a lot of my nerve to feel confident enough to feed him in public. I knew the agonising that you go through when attempting your first public breastfeed, but it was nothing compared to how this felt. I longed for it to be that easy (even though I know breastfeeding can be very difficult and we still have a long way to go towards public attitudes towards it too) but here we were, sometimes in nursing rooms, sometimes in cafes doing our whole tube feeding routine and trying to make sure Rohan didn't bring up whole feeds. Looking back now it was a tricky time, and I can't quite believe we got through it. I know in a way we're lucky that Rohan has actually managed to wean himself off the tube, where many parents with children with additional needs face long term use of them or other feeding methods.


Rohan has suffered with reflux, or poor gag reflex since he was tiny, meaning his weight has always been a constant issue for us. We saw his own dietician weekly or fortnightly to keep a very close eye on his progress, and throughout all of this journey I have to say that this has been one of the most stressful things. I dreaded those weigh ins, to see if he'd lost any weight and all our hard work would have been for nothing. My heart would sink to see him fall off yet another centile line and his little chubby body becoming less so. But we carried on, and despite the weight loss he continued to do really well on taking from the bottle, he just needed to be able to keep it down. We switched bottles too on a recommendation (thank you!!) and suddenly we turned a corner. We realised we were no longer using the tube to feed in the day, and whilst Rohan was still taking little but often, he was indeed taking pretty much all of his feeds orally. By this point I think it was on the advice of our speech and language therapist and dietician that we could try introducing solids.

This again was a whole new world to us. Rohan was no way strong or coordinated enough to try finger foods so we had to go down the puree route, something which we didn't do with Theo. We followed baby led weaning with Theo, and though whilst it was slower progress to him eating proper meals, he did really well with it and I don't think he ever had any purees and it just worked for us. So again it was time to learn something completely new.


We bought a few pouches of puree and some fortified porridge and experimented with those. We still had to keep up with his milk allowance (and actually still do) but just try and offer him extra food in between. I was so nervous the first time we tried it, fearing he'd just not know what to do and would end up vomitting it all up, but he didn't. He took it really well and actually seemed to enjoy it. I was relieved. Something finally going well.

I was then delighted when Picollo offered us to try some of their brand new range of purees, with some really great flavours to try. I think being able to have such a great range of flavours available and to try has been such a benefit for us, especially knowing that the ingredients are organic and full of goodness. I love that the purees have mediterranean influences in their recipes and they have some really exciting flavour combinations. They've been such a great starting point for us and I feel like Rohan's been introduced to such a wide range of tastes already.

So that's about where we are. We're working up to having three proper meals a day, which is maybe slow progress but I think that's just how it's going to be. But I'm just so happy that Rohan has taken to eating and it doesn't seem to cause any problems. Last week I even tried him with a little soft finger food and he managed to hold it and guide it to his mouth really well so that's such an encouraging start. We also recieved some different purees from Babease with some adventurous flavours as Rohan gets older and we move onto grains and more savoury flavours and textures which have gone down a treat too. I love knowing that we're feeding Rohan great ingredients and exploring lots of flavours. 

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