Day 98

21/3/17 – Day 98 – 39 weeks corrected today 🎉

Current weight 2.579g/5lb10oz (exactly the same as this time last week).

We’re having a pretty okay few days all things considered. Now he’s on Optiflow (now at 3L, next step is low flow!) and the long line is out it’s so much easier to get him out so we’ve been able to cuddle him as much as we like. This morning we spent an hour doing kangaroo care and Arlo loved being skin to skin. He is super strong though and was making us laugh by fully lifting his head up and looking around the room like a meerkat. Then once he finally lay his head on my chest he starting rooting like a mad thing. Had to make do with his dummy though!

Nutrition has been the main focus of the last few days really. Last week Arlo reached full feeds of 32ml every 2 hours and his TPN (iv nutrition) was then stopped. His weigh-in the next day showed he’d lost weight so some of his stoma output was sent off to check how well he was absorbing the nutrients. The results showed that whilst he was absorbing sugars, and some other bits I can’t remember, he wasn’t absorbing fats. Quite a common problem with the position of his stoma apparently as everything passes through quite quickly, too quickly to fully absorb nutrients. So it was decided between the surgeons, the dietitian and the Doctors to try Arlo with a special high fat formula mixed 50/50 with my milk.

To be brutally honest I was a bit sad about this. Not because I particularly have anything against formula, although I did breastfeed his brothers and I am inherently lazy so the idea of pissing about with formula scares me a bit tbh, but more so because when you have a premature baby there are so so many normal every day things that you’re unable to do for them. Particularly in the early days. You can’t hold them, cant feed them, can’t dress them, you can’t bath them (Arlo’s never had a bath, he’s 14 weeks old tomorrow!). You can’t make them better or take away the pain and discomfort of having blood taken every few hours or the medical interventions that are necessary to keep them alive. You can’t make it so that even something as natural as just breathing isn’t the hardest thing in the world for them. Worst of all, you couldn’t do what millions of other woman do everyday and keep them safe until they were ready to be born. And don’t even get me started on the guilt…

One of the only things I could do, just me and no one else, was provide milk for him. And now it turns out he physically cannot thrive on that milk alone so it’s yet another thing that I can’t do for him. Now please don’t get me wrong, I completely understand why he needs this and I will always always do whatever is best for him and for now this is what’s best for him. It just, briefly, made me feel a little bit sad that’s all. It’s not forever though and I’m still hoping I’ll be able to feed him eventually.

As it goes he’s still not gaining much weight (but a gain is a gain as far as I’m concerned!) and his output Friday and Saturday was far too high, so high he needed replacement fluids, and that won’t have helped but it does seem to be settling down now. It’s possible the infection might have made his output go up so we’re waiting to see if things settle down now the crp is coming down. Fingers crossed.

Arlo will be 14 weeks old tomorrow. Can hardly believe that. It’s a little bittersweet to think that if it weren’t for the NEC we could possibly have been preparing to bring him home now. Instead, the finish line is completely out of sight once more. Obviously we’re just very grateful he’s here at all though! Still fighting away, and that finish line can wait, we’ll get there eventually…

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