Feeding Tube Awareness #3

Yes, I have a superpower ( 🤫 well I may have more than than one 😱)!!

I run my feeds 10-12hours overnight but I also will run electrolyte fluid during the day as needed. As it can be hard for me to get enough fluids in…. avoiding dehydration can be a challenge!

Once setup I will put it all in a backpack and just go about my day doing my best tourist/ student impression…..🤪 during the night the setup backpack just sits on the floor next to me making the inevitable nature calls relatively easy (you try sleeping through whilst approx 1L gets pumped into you 😂🤦‍♀️)!

#feedingtubeawareness

Feeding Tube Awareness #2

This is most of the equipment I utilise daily to fuel my ‘beautifully and wonderfully made’ body!

For many people, myself included, this is primarily personally funded as we fall through the gaps in the healthcare system. As you can imagine that can be very costly. More awareness is needed in the general population to help change the system!

Please take the time this week to understand tube feeding and the blessing that it is!

#feedingtubeawareness

Feeding tube awareness week #1

This week is Feeding tube awareness week.

I am a tubie!

I have had a feeding tube now for 17+ months.

All types of people for all sorts of reasons have a feeding tube, they are life saving! Without mine I would be very very ill and would have little to no quality of life.

I look well (most of the time 😜), whilst people will say I don’t look sick enough or think that I am too Healthy to have a feeding tube… that is not the case…..I am healthyish BECAUSE I have a feeding tube.

People with feeding tubes can and do live perfectly functional lives sometimes without you even knowing. They may be completely tube fed or they may just ‘top’ up their calories whatever they need. Yes some people can still eat with a tube!

Please take this week to learn about feeding tubes and help spread awareness!!

#feedingtubeawareness

The nursing struggle

I never made a conscious decision to stop breastfeeding my second child.

It more a response to the pleas of my spouse. I was intent on breastfeeding, the thought of having to use formula would mean that I hadn’t tried hard enough, that I had failed.

Even though my eldest had been formula fed from 4.5 months. But because of my seconds prematurity I couldn’t breastfeed at first. He was too small and his digestive system wasn’t fully formed, nor could he coordinate sucking, swallowing, and breathing at the same time. In fact at first he wasn’t having any ‘feeds’ but IV fluids as his tiny body was struggling so much to survive that if we put something in his stomach, his stomach would encroach on the space meant for his lungs and he wouldn’t be able to breath.

I also couldn’t cuddle, or hold him for the first week of his life, when he was born he was taken to a different hospital to me so I didn’t get to see him until he was 3 days old let alone hold him.

So instead of breastfeeding, mothering and changing nappies the only thing I could do for my son was to express, every two hours for half an hour around the clock, that’s six hours a day! I obsessed over it did it without fail, I both loved the breast pump and hated it. It both represented my ability to do something for my son, but also represented all that had gone ‘wrong’, represented that I could not feed him, hold, him, be with him for more than a few snippets during the day. It was yet other machine that was taking the place of what I was supposed to be able to do. Oh and incase you haven’t used or seen one they hurt, a lot, and they are a clear so you can see you nipple being stretched further then imaginable, and then pining back as the vacuum is released, it’s its own sort of special torture.

After a few weeks it did become my own personal physical and emotional torture that I was intent on inflicting upon myself so that I could ‘feel’ emotionally and physically that I was doing something tangible for my son. But when I would take my expressed milk into him and put it on his shelf at NICU and see that his shelf was almost overflowing I felt a huge sense of relief and validation as a mother. And then finally he started have milk through a feeding tube, but real normal milk, my milk! He started of at 2mL every three hours, and even then the nurses had to keep checking (by drawing out the milk via the NGT) that he had indeed digested the previous feed before we could feed him some more.

But before I knew it the milk that I had bled, sweated and cried for in his fridge was gone. The one ‘job’ I had, the one tangible thing I could do, wasn’t enough, not even close he was soon taking double what I could express and no matter how hard I tried, from power pumping, to diet supplements, to medications I could not make enough, in fact all I ended up doing was giving myself several bouts of mastitis, and my beautiful baby had to start having formula supplemented feeding. As much as I didn’t want him to have formula I couldn’t jeopardise the strength my son had started to get, couldn’t undermine him or his doctors.

It didn’t improve when he finally did come home. So I kept trying, harder and harder it was scarily obsessive, but it was at the time the only thing I had to ‘measure’ my worth as a mum, was the only tangible thing I could do for him. Meanwhile not only was I not connecting with my baby because I was always at the pump or thinking about when I next had to express but I was also neglecting my husband and my eldest son. It came to a point where my husband started suggesting that maybe it would be best if we changed to formula fed after all he was nearly three months now and was already getting roughly half his feeds in formula anyway, and formula certainly didn’t seem to have adversely affected our eldest.

So I stopped as my obsession was adversely affecting my family. It took me a long time to realise that perhaps he was right, perhaps what my son needed more than anything was a mother who could just hold him and love him and not be fretting about expressing and supply ALL the time.

Our ability to nurse is so fundamentally tied into our sense of self worth as a mother and portrayed as the most basic natural thing that when one fails to be able to do so what becomes of us.