My Tubie

One of my fears about getting a tube was how well Wriggles would cope with it.

Our feeding tube had been mentioned and talked about for a while, but when it was placed was pretty much a snap desicion based on evidence of aspiration, making it a less of a choice and more of an urgent medical necessity to protect her airways and lungs.

To my surprise, Wriggles transitioned pretty well to the G-tube. We only had one real incidence whereby she obviously missed having a bottle. Maybe I was 'lucky' that her delay in communication meant she just couldn't communicate her distress more frequently, maybe she is just wonderfully easygoing, maybe her slightly muddled up sensory signals meant she herself couldn't process missing things and any subsequent hunger or lack of oral stimulation or maybe a little of all of the above. I think by the time the g-tube was placed, both of us and all the nurses we had come to know exceptionally well, were just so delighted to see the back of the NG that frankly anything would have done! The NG was necessary at the time but was just horrible. The worst part about it was it's impermanence and against the tide of reflux that swept daily meant it needed replacing so frequently. When it was first decided that tube feeding was the plan, the nurses gave us a silk NG which can be kept in for 4-6 weeks. It lasted under 24 hours. 3 silk tubes later and it was clear we may as well go with the standard ones used in hospital as they were not going to stay down that long. And they didn't. I think the longest Wriggles kept one in for was 36 hours, and that was strictly a one off. Her gag reflex and reflux was so unpredictable even when medicated that the tube stood no chance.

As soon as her chest was clear enough to withstand a general anaesthetic we were admitted for surgery to place the g-tube which we now have. Handing her over in theatre and walking away was a very raw moment and one I will not easily forget. The path back involved walking past the entrance to PICU, the ward we know all too well. I know the layout like the back of my hand. It is one of those places forever imprinted on my heart and one that makes my heart creak at that. Just an hour later, I practically ran back to my baby in recovery. She was so small on the big bed. So small. And so in pain. It was all I could do not to wail and thrash myself. Slightly hesitantly I picked her up, so afraid of hurting her. I peeked under her huge surgical down and saw the new tube. At that point, she was still very small for her age and the tube looked enormous poking out of her tummy. A horrid part of me felt revulsion at this alien object piercing her beautiful unblemished skin and an overwhelming sense of dread that just maybe, I had made the wrong decision. After all, there was no getting away from the permanence now. This was staying in until at least a further operation.

Back on the ward, she required oxygen for the next 24 hours or so. Once we found our space, she didn't move from my lap for the rest of the day. I think I had one bathroom break. Never has she sat so still, writhing in discomfort. Just hours earlier she had been so full of beans, smiles and giggles. Now she seemed so young, so helpless. The responsibility of being a mother, advocate and guardian never weighed so heavily on my shoulders. I had consented to this for her. 

Inspecting her new addition

The next few days were unsurprisingly unsettled. Gradually I learnt to care for the tube, she perked up a little and we got the all clear to come home. The relief at being back in our familiar little sanctuary! Her age was difficult. At that point she was still not showing tremendous amounts of understanding, and even if she had, what do you say to someone not yet 2 years old about not being allowed drinks anymore, surgery and a foreign object dictating your feeds that is connected to your innards? I struggled to process it as a 25 year old mother, let alone a toddler brain. I drew her some pictures and tried to tell her about it, tears pricking my eyes. Days ago I had hated NG tubes with a fierce passion. Now a part of my longed for them again. Wriggles, my rock as always, showed no such feelings. She adapted astoundingly well to her new tube, feed regimes and warily let me carry out the cares for it. And so, we recommenced life, albeit with a some special formula, gigantically heavy feeding pump and bagfuls of syringes. Soon, it was as if we had always had the g-tube. I began to come to terms with the fact Wriggles was now a tubie and was going to be a tubie for at least the next year, probably longer. I think the NG always carried a little hope; it slipped out so easily maybe a magical solution could be reached and we could just whip it out to discard it forever?

Of course we couldn't. As we had discovered in the past, paediatricians do not give feeding tubes lightly. We have now had the g-tube for four months. It feels like forever. In some ways, it has of course complicated things especially daily care. A lot more is medicalised and our movements are slightly restricted by needing to adhere to a feeding plan and having lots of equipment. But in other ways, things are simpler. Easy as: feeding tube = less chance of aspiration = less chance of admission to hospital! We haven't had an admission now for 3 months, which is one of the longest stretches ever to have been out of hospital. Yes, we have a super long way to go until we don't rely on the tube but now I accept that the tube is here to stay and that is that. And as for my little tubie? Frankly, I could take lessons from that girl. The way children take things in their stride and adapt never ceases to amaze me. Nothing is stopping that girl from doing what she wants. Not a feeding pump, not a piece of medical grade silicone protruding, not nothing. We still struggle with oral feeding. Reflux is still as unpredictable as ever even with medication. There are still fears about aspiration. There are still respiratory issues. But my little girl is growing, smiling and taking life with both hands and that is what matters.

Complex

Wriggles gets as much post as I do, if not more. Today yet another letter plopped through confirming we have been referred to ENT because of sleep apnoea. I am really glad about this referral (apart from a possibility of impending surgery) but there was one line which made my heart sink.

"I enclose a copy of my last clinic letter on this little girl. She really has a number of quite complex interconnected problems."

All I can think of when I look at her little shining face, is how can the simplicity of such a happy child be complex? Be so complicated? Warrant so much medical involvement? Cause so much worry? 

I still struggle to accept our lot sometimes. Accept Wriggles, no question. And I know Wriggles comes hand in hand with her problems. But sometimes I still feel in a dream-like daze when I think of them and look at her. For want of a better word, she looks so normal. 

Along the way, we have met so many wonderful children and brave parents who deal with so much more than we have. Their strength to get through and fight always impresses me and makes me feel often we are making a fuss about nothing. So it always comes as a surprise when paediatricians or similar refer to Wriggles as being complex or a medical pickle. Because y'know, she is pretty normal. Apart from the non-eating, tube feeding, vomiting, chesty, hospital-loving, appointments-riddled, non-walking, non-verbal thing.....oh. 

God, I hate the word "normal".

Alternative Physio

Between every week to two weeks, we have physio through the NHS for Wriggles' cerebral palsy. We also have a rough program to follow in between times, focusing on leg stretches and some work on the pelvis and core. As well as this traditional physio, I am lucky that despite not being able to walk on her own, Wriggles has cruising skills and loves a sense of danger....making the playground an excellent work out! When the weather is permitting we go often, and it really does help as there is also an incentive for her to do things.

One of the great things about the climbing frame is that it gives her the ability to help walk forwards holding on either side. This is definitely one of her weaker areas as her core is wibbly wobbly. If she could side-step and cruise to get around, she would. Actually, if she could crawl she would but she is slowly figuring out that crawling on ice, snow or mud is not as easy as trying to walk. When going forwards with her hands either side on the bars, she tires easily and walks much slower; you can see the poor sausage working hard! She is now a dab hand at her beloved stairs and pulling herself up, although during the latter her legs often get confused and bend awkwardly. Her balance and spatial awareness also get a good work out and the swings help her sitting which of recent has been a bit more unpredictable as a growth spurt has confused her hamstring muscles which impacted on her posture. 

And above all, the playground is wonderfully enjoyable and doesn't feel like a chore at all! Even if people assume she is far younger, we don't get as many second glances as I hobble around holding her up, or if we do we're having too much fun to notice.

Matilda Mae

For Matilda Mae, taken too soon at just 9 months old but loved so much by her family; forever.  

Matilda has a Bliss Precious Star Fund and bloggers are helping to name a star for her. 

Fly high, Matilda Mae and my deepest sympathy and love to a family I have never met but followed regularly on a very honest and loving family blog. xxx