Wednesday, August 15

First Day

And so it starts. 

My new routine:

Lansoprozole MUPS 7.5mg dissolved in water, once a day
Domperidone 2.3ml three times a day
Co-Amoxiclav antibiotics 5ml twice a day until PEG operation (possibly to be replaced with a long term antibiotic post-operation)
Fluoxetine inhaler, one puff twice a day

4 x 100ml bolus feeds of Paediasure (1 calorie per ml) with a 10ml flush of sterile or cooled boiled water (10am, 1pm, 4pm, 7pm) each taking half an hour. Before each feed, the tube needs aspirating and the pH checking.
10 hour continous feed at night of Paediasure Plus (1.5ml calorie per ml) of 400ml at 40ml per hour. Flush in the morning (around 6am).

In one sense it is not too different from our old routine:

Baby gets up.
Baby gets me up.
Baby has bottle. Baby gets bored of bottle. Baby slowly has bottle over morning including lansoprozole sneaked in feed.
Baby has lunch.....etc
Baby goes to bed (fingers crossed).

Except it feels very different. For a start, there is a little machine which beeps at me. There is an awful lot of handwashing. Although the level of washing and sterilising is not too different, it feels different. Things are more regimented. There is a slightly draining feeling that I am a doing little too much jumping around fiddling with medical equipment rather than "mummying".

I know it is the first day.
I know it is bound to be tiring after a fortnight of emotional stress.
I know all this.
I know it is worth it.
I know it could be far far more complicated or stressful.

But I miss the simplicity of the old times. 

I am so grateful for the input of talented consultants who give a fig about making my daughter better not just not their profession or for her well being but mine also. I am so glad that at last someone has put their foot down and said that is enough frequenting of a&e. This is getting too silly and draining the quality of life for you both and should kickstart development sluggishness or address things better in terms of firming things up for the future.

It's just, without wanting to sound too much of a moany-guts, that I am sad it has to be this way. I am sad for my baby that she has lost so much babyish innocence and experienced so much so soon. I am sad for me that my first precious child differs so much from the promised ideal.


  1. Oh my gosh, that is a lot! I remember all the meds Gemma was on when she came home and her milk was Pepti Junior that you had to make up everynight with cool boiled water.The constant washing and sterilising of syringes and things I used to make up the milk. Making sure plenty milk in the bag etc...

    It will get easier once you both get into the swing of it and catch up on some sleep. I really hope this new regime works and wiggles can grow and get stronger and much more time for playing and fun.

    Luckily they won't remember all this when they are older but we will never forget.


  2. Oh and MUPS, yuck!! What a pain to dissolve, we were doing in 5ml to limit gemma's fluids and was always worried about clogging the tube. It only happened once to us and it was a nurse who did it but was always worried.

    Not sure how the PEG works but you can get liquid MUPS.It is expensive and they only had it on our ward if someone was in with an NJ tube.Not sure what happens if PEG tube get blocked.

    1. MUPS are disgusting! I know they are a million times cheaper but they really are a pest and a half! So far I've only blocked the tube once and quickly sorted it, throwing caution to the wind about fluids whoops. Onwards and upwards... and so true that they won't remember and we will. I imagine that is where (a lot) of wine comes in handy.... x

  3. GAH you must be beyond exhausted, I'm so sorry... I'm sure your anxiety levels are sky high, but please do go really easy on yourself, take care xxx