It’s all about poo!

It really is all about poo🙈💩 - my notes in hindsight:

In the last week we have been monitoring Arlo’s dirty nappies like hawks. I know that this is a common thing for all parents - checking nappies and constantly wondering whether what’s in there is normal!

But for Arlo it’s super important because his nappies can be a good indicator of whether his creon (digestive enzyme) dosage needs to be upped.

With creon it is not a case of a given amount working forever - we need to increase it depending on how much food and milk Arlo is taking in. And if he’s taking in more than the creon can help him digest, then his weight may drop again.

We started weaning him around 6 weeks ago and we’d been advised to give a tiny bit of creon with any solids containing fats and protein. It’s also been over 8 weeks since we last increased his creon from one scoop to one and a half scoops before a milk feed.

Obviously he’s constantly growing, takes larger volumes of milk more easily, and now he’s getting more confident with solids. So it makes sense that his creon intake will need to be increased.

I had a call with his dietician after noticing his nappies were runnier, more frequent and a little mucusy (yummmmmmy - as Ace Ventura would say!) And she agreed with me that we should go up to two spoons with every milk feed and one spoon with each solid meal where we’re offering protein and fat - and then monitor his nappies from there.

Having checked his nappies since the increase, they are so much better. I think it’s done the trick👍👶🙏

I’ve said it before - it’s an art, not a science - and we always need to keep tabs on whether Arlo is getting enough to digest his food properly.🍼

I have a diary entry from the first time we started giving Arlo creon just after his diagnosis. They really are magical little granules that keep our CF babies healthy.

Read more in my diary entry below:

Sunday 30th August 2020

Arlo’s age: 4 weeks and 4 days old

Arlo’s poo is already very yellow now! They were so much more green before. But now they’re more like the colour of the nice mustard rug we bought for his nursery! Parents always love a poo chat!💩

I am really hoping this means that his enzymes are doing the trick. It’s really tough not to over analyse every tiny thing he does now and wonder if it’s connected to his cystic fibrosis and/or changed since we started him on his medication.

But at least today it feels like there are improvements on what was happening before we knew about his CF and I am so hopeful that he will start to put on weight.

I stressed so much about his weight before we found out about the cystic fibrosis. I blamed myself - as did all the midwives and health visitors (thanks ladies!) - for Arlo’s weight loss because everyone said it must be a breastfeeding issue. That’s a lot to ride on the shoulders of a new and first time mum. I remember saying to my mum in a moment of despair, “I just want a chubby baby”. I also remember panicking about spit up and thinking “God no please don’t spit up the milk, you need every drop! Keep it in there!” And every 3 hours - or less sometimes - I was feeding Arlo whether he’d asked for it or not - so desperate to get him back to birth weight!

So it feels so good giving him those magical little granules (they seriously remind me of Bisto🤣) knowing that he’s absorbing my milk properly now. And I actually can’t wait for his next weighing to find out how much weight he has put on.

It’s also still hard to not look at other new mums who are out and about or on social media and wonder why us and not them? Because all the things that they need to worry about seem so trivial when compared with all of the things that are on my mind. When shall we give Arlo his antibiotics today? When should he take his vitamins? Is he getting enough of his enzyme? What does that poo mean? Was that a cough? Is this medicine giving him a bad tummy? The list goes on.

But I know that this will become second nature and I know it will get easier. And most importantly we are doing the right thing for the little man. That’s all that really matters.