Wednesday, June 20

Last Chance Saloon

Today, we had our review with our dietician, Lovely Ruth. It had been a few months since we saw her and although I had the familiar butterflies, I was largely very confident with the progress Wriggles has been making with trying out new foods, textures both orally and otherwise and her acceptance with mealtimes generally. She has made huge strides with her oral motor skills this year, learning how to chew and push food around her mouth. I hoped for at the least a gold star!

In the weighing room though, I began to catch a whiff of reality as they furtively plotted her height and weight. I knew from regular weigh-ins at baby clinic and the fact her ribs have suddenly got visible that although she isn't consistently dropping weight, that her weight is very unstable. I tentatively asked how the dreaded graph was looking. She has dropped another centile, in weight and also in height for the first time.
Although never exactly beefy, I used to have a vaguely chubby baby. When we started out weaning, Wriggles was quite healthy looking and cheerfully sitting around the 50th centile. Even after her intensive care foray, she still stuck not too far from there. Even after the dreadful summer of hospital admissions, she didn't stray stupidly from her line, and sat around the 25th centile mark with her height nicely matching up. No one was really overly bothered about the chart at this point. She wasn't doing anything overly silly, although no one was quite listening to me about the lack of eating anything. Ironically, at the height of her reflux when she was vomiting large amounts nearly every feed, she was around her heaviest.

And then, bit by bit, it all began to fall away and over the last few weeks I began to uncomfortably notice my child is resembling a xylophone. I know part of it is that she is growing up and loosing the baby features and also is a lot more mobile and full of beans. But to keep being full of beans and keep her development fuelled, she really needs energy. And energy, as my biology lessens taught me, comes from food. She is already at a disadvantage with slightly dodgy lungs thanks to prematurity, so she needs even more energy than your average mad toddler. Ideally when your baby or child is learning to eat, it helps to have some weight to play with as they might yo-yo whilst dropping milk feeds to accommodate food and tasting through things finding out what they may or may not like. Unfortunately, this is where we hit our snag. Sitting at the bottom of the blasted graph, we now has no weight to play with and an all-too-well documentation of having "no reserves." And thanks to acquiring a dietician and a very interested paediatrician, now the graph does matter and we are very much on the radar of the team again. We now have to make 'plans' and have 'options'. And I'm not just talking choosing lunchbox items.


As today's meeting ploughed on, our little bubble began to touch the ground. Yes, we have made progress and Lovely Ruth is delighted in that, but she is also less delighted in the fact she can use Wriggles as a musical instrument when she picks her up. As Wriggles tried to climb up the bin when she thought i wasn't looking, Lovely Ruth said gently that we have to start thinking about a Plan B. Actually, it must be Plan Z by now. The fact that she can't maintain any weight, let alone healthy weight, is not brilliant. The new Plan A is to change formula milk again. We are dropping the peptide high calorie and going onto a super high calorie. 

Plan B, is reviewing how this affects things in a few months. If it is not making a difference, then we have to start looking at serious options.

Tube feeding.

TUBE FEEDING.

After all of the last year, all of the hard work, all the trials, the tears, the breakthroughs, the sodding flipping Quavers, we are looking at top-up tube feeds again.

We have three months to make an improvement. That's fine, right? It's not like we're going to turn things around, but if we can just make a leap into the right figures and lay down some fat, however thin.... Because the thing is, after Wriggles turns 2 it isn't too long until the RSV season. It sounds ridiculous. She doesn't "look" like a premature baby now, but this is still a big season on our calender. And not for cheerful reasons. 

Unaware of the trouble or even unaware that for many babies things don't happen like this, Wriggles pulled herself up on the bin.

"Don't do that Wriggles," I murmured absentmindedly. "Are we talking NG or gastronomy?"

The worst thing is for me, is that it is coming from Lovely Ruth. Lovely Ruth is the one back in October 2011 that fought hard for Wriggles not to be tube-fed. She overrode consultants and argued with registrars. She was fierce in taking our side and fighting for us with the medical jargon. So we know now, that this is really reality. She has always been against it for Wriggles.

"It's our last resort," she said. "We've going to see how this milk works. Fortify ANYTHING. Drop the five a day. This is about calories, just for the moment."

So here we are. Once again, eating is a huge focus. I hope against hope that this upward trend in acceptance and curiosity from Wriggles will ensure that tube feeding stays an idea, and an idea only. Just because you have a plan, you do not have to use it. I am so glad that I will soon not be at work, and I can work on this with Wriggles and know there will always be someone with her to stuff anything in! The trick will be finding a fine line between improving things and quickly without it taking over our lives. I do not want to lay down obsessive foundations surrounding food that may take far longer to shift than it may be to gain a few pounds. 

Cream cake, anyone?


8 comments:

  1. Oh Hun, sorry to read this. This must be really stressful for you to have that pressure back in your life. ( or should I say significantly increased after being mildly reduced) but you and wriggles can do this, I just know you can!!
    Roo has dropped a centile since crawling too and many babies do, but i understand that, excuse the pun, wriggles didn't have much wriggle room, which makes it so much worse. But you just carry on doing what you're doing, because it's been working great so far. X

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    1. Thanks Leanna. Here's hoping!! x

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  2. I can't believe I'm crying for you!

    The tube feeding bit got me.

    You are doing an amazing job, clearly this is a complex problem, but I have extremee faith in you that you can help Wiggles.

    Let us support you anyway we can

    And break out the marscapone!

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    1. Thanks Kylie :) all tears are welcome!

      Re the marscapone-unfortunately this is where the trouble starts, accepting and swallowing textures. We have a very very very limited palate of what can even get near Wriggles' mouth let alone in, and the small things we have have been gradually accepted over about 15 months! Unfortunately marscapone is very much a work in progress, as are a million other higher calorie things! Sadly breadsticks just don't cut it with weight gain. Rubbish!

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  3. It's so worrying I know. I hope you manage to find some high calorie foods that she likes. Good luck. xxx

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  4. You are doing a great job and she has come so far. I know how hard it is to get calories in with a limited amount of things being tried. Until very recently gemma wouldn't eat anything vaguely slimey or off a spoon! After getting rid of NG it just clicked for her though still a long way to go. She can do it and so can you.
    I would be concerned about tube,certainly NG,feeding setting her back when her oral aversion is improving.
    It is so hard to have appointments like that, really know how you feel. So frustrating.
    X

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  5. With a child in a wheelchair I have the opposite problem, but my dd is not keen on solid food either, and one thing that works well here is Slim fast chocolate drink which has all the vitamins in it. Made with full fat milk, would that be of any use to you?

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  6. I'm so sorry to read this Mouse, what a stress this must be for you. Will keep you and Wriggles in my thoughts and prayers for some good, strong and high calorie eating! xo

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