Fed is best 

Although it sometimes takes a really long time to accept this.
Because it’s natural to breast feed (as natural as something can be when almost every single woman who pops out a kid struggles day in and day out with it…) and to want to breastfeed. And then when that doesn’t work and you’ve cried your tears dry over it countless times, you accept that bottle feeding may be the way you’ve gotta go to help your kid grow. Then when that doesn’t work and you’ve gone through the same process of grief and despair, you accept that perhaps having a tube is the way your baby needs to get nutrition to grow big and strong. Not many people end up at this stage, as much as it’s a huge part of hospital life it’s actually an extreme minority. Thankfully.

But when you do get to this stage, and you’ve been through the previous two, for some reason you keep going back to them. There’s something inside you that says you’re lazy and haven’t tried hard enough and that’s why you’ve got the tube.

We headed towards stage four last week, switching our nasogastric tube out for a longer one that heads on back into his jejunum. We understood their rationale, he wasn’t happy with the NG, he was throwing up, we were next to his bed the full hour of the feed, plus most of the hour after that comforting him and trying to catch the spew, we were bone tired, nights consist of two 30 minute sleeps and two 2 hour sleeps. Which in total is 5 so that seems pretty good to me, but 5 in a row is a different thing to 5 in four separate blocks. So they proposed the NJ as a break for all three of us. Just for a short time, then try again with gastric feeding.

Like a lot of you will have experienced, in the appointment I’m all like yeah, absolutely, seems like the best way to go, totally agree with you. Then you get home and you hash it out and you think about last time he had an NJ, and how far away that is from orally feeding, and after a couple of days (had to wait for the radiology appointment for insertion of said NJ) you’re thinking nope, bad idea, what’s the point, we gain nothing except some sleep, and that just seems lazy, stop being lazy. So we declined.

Battle on we said.

So naturally, because I’m a mum and love to punish myself and make myself feel guilty (who’s with me??!!). I then went back to step 1 and 2 and thought why the hell aren’t we working on this????

Cue three feeds of a bottle attempt resulting in a child who won’t take bottle or dummy, and a mum who thinks she totally ruined EVERYTHING because if he won’t take a dummy we are literally screwed, that’s the only way to comfort him while a tube feed runs through. Follow this with an evening of “we will NEVER feed orally, he’s gonna be walking around university with a silastic tube taped to his face!!!”. I can see it now, his mates will think he’s so awesome, I can do a yardy no trouble, just whack it down the tube bro….

Sometimes you need an external voice of reason.

To say, stop.

Is he growing? Is he developing? Is he happy otherwise?

Yes. (Said like a true sulky 7 year old).

Then at the moment that’s all that is important.

Let him smile, and play, and reach for things, and roll, and start to giggle. Let him grow, grow, grow. And with growth comes strength, and with strength comes learning, and with learning comes feeding. Hopefully.

And I guess in the grand scheme of things hope is all we can do.

We can offer him the chance to try, and I do, a once per day small breast feed, but we ensure he gets the full volumes down the tube because grams is what we want !!!

What do we want??? GRAMS!

When do we want them??? NOW!!

I guarantee you this doesn’t mean I won’t fall off the proverbial wagon and head back a few steps in a desperate attempt to not feel like a failure as a mother. Even today I caught myself saying that I might just offer him a breastfeed a couple more times in a day, just to see if that will encourage him. And I’ll do it. And no doubt it’ll be a disaster and he will get frustrated and I’ll get disappointed and I’ll need someone to run me through the ‘is he growing’ pep talk again.
But right now it’s 2311hrs, his 2200 feed is almost finished running through the pump and he will continue to sleep from now until 0530, because he doesn’t wake to eat. And as abnormal and miserable as this is, because we would give up everything we had for a kid who would eat, it does mean that he is growing. He is, for 10-12 hours every night, solidly growing.
Breast fed, bottle fed, tube fed = fed.
So punish yourselves mums, but then say sorry. Breathe. Look at the growth. Dream of oral feeding. Then go and set up the pump.

And get that kid up one centile.

Every centile is one step closer. To what, I don’t know, but it’s gotta be good.

You can do it.

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Author: rfclews

I'm just another mum trying to figure all of this out, with the added bonus of getting to start extra early, and well and truly on the back foot!

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