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Sunday, 29 March 2015

Our Morning Routine

At the moment I am up at approximately 5am with Harriet and more often than not her big sister is up at the same time too. The difference is that Harriet will go back to sleep; Nancy will not! Lately we have had lots of bags coming unstuck on Harriet’s tummy overnight so to wake up and see she’s covered in poo is a nightmare. I know there’ll be no chance of going back to bed as it’s quite a process to clean and redo. I’m sure every parent reading this has been there though, and there’s not much difference to this and a nappy explosion. I just have to be well prepared with pre-cut bags and have all the products ready and set up. Good job I have early starts as we do have a lot to fit in, starting with breakfast for Nancy and I…

Sleep deprived and desperate!
I always have the same thing every morning – I’m a creature of habit, although I may switch up the topping depending on what we have in. Mine is porridge with half a banana, cinnamon and honey. I make sure I get plain porridge with the only ingredients being oats. I try to keep it simple. At the moment I am adding a couple of golden berries that I picked up from Costco which I’ve just joined. (It’s amazing. Why didn’t anyone tell me about this place sooner!?) The packet claims the berries are anti-fatigue which I am slightly sceptical about but anyone who is a parent will know how desperate things can get. I also like to have a mug of hot water and lemon before I eat my breakfast. I tend to drink this while I am sorting Nancy’s breakfast, putting out dog food and water for our lovely cocker spaniel Arthur, and preparing Harriet’s medicines. I am trying to be healthy but I think it is going to be a long road to my pre-pregnancy jeans!

Depending on how Harriet is she has six syringes of various medicines, all with different amounts, antibiotics to keep infections at bay plus additional vitamins and salt. She has four bottle feeds a day alongside breastfeeding, and we have to inject salt into each bottle as well as administering it orally twice per day. Harriet has salt supplements as her body’s cells don’t pass salt and water which is what would normally happen for us. The water thins down all our mucus but as hers doesn’t get diluted she is left with the thick stuff which can be a breeding ground for bacteria and infection. We have to keep all the syringes sterile too. 

Every time Harriet has any milk she has to take enzymes (Creon) to help her absorb all the nutrients as she is pancreatic insufficient. To help Harriet take these I use a pouch of apple puree. If anyone hasn’t spotted them yet, Aldi have started doing their own version which are a lot cheaper than Ella’s Kitchen where we were having to buy them in bulk. The contents of a tablet are poured onto a spoon full of apple sauce and she takes it that way – I got some funny looks doing this when she was a tiny baby! When she is older she will swallow potentially 30-40 of these tablets per day. 

Once the medicines and bottles are prepared I eat my breakfast then start Harriet’s treatment. First thing is physiotherapy, which we only do if she is unwell. She has two twenty minute sessions a day to help move the mucus in her chest. How this goes is anyone’s guess – I have actually managed to do the whole lot while she’s been asleep to the antithesis of hysterical crying from the get go. Once the physio is done, next up are the medicines. Again this can go really well or really badly! There are certain ones, mostly the Flucloxacillin and the salt, that she hates and will try to spit out. We have found that taking our time and injecting tiny amounts at a time help Harriet take it all in. During all of this Nancy is usually very good, and will just sit and eat her breakfast and watch TV. 

Once the medicines are done all of the syringes have to be cleaned and sterilised for use later on that day. Finally, after all this, she is generally fed up and hungry so she has her bottle of high calorie formula (Infatrini Peptisorb) which washes down the contents of two different tablets (Creon and omeprazole). As I am typing all this it makes me realise how different things are for Harriet, but for us it has just become the norm. 

Most days this all happens smoothly and we can get ready and head out somewhere. (FYI afternoons are best for us if anyone fancies a playdate!)

Please comment below if you have any questions or get in touch via my social media profiles Facebook or Twitter.

To sponsor Chris Emily Marie.

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