Tuesday 9 May 2017

Eat, sleep, grease, repeat


Back in those early months we had a very strict routine for Alfie’s skin care.  We spent countless hours in our bathroom, it became the hub of our house (still is actually).  I am going to talk a little about our routine back then.  It has changed over time and we have made adjustments as needed.

After getting up and giving Alfie his milk (and later, breakfast), we would head to the bathroom and there we would stay for a good couple of hours.  We always took a cuppa with us because, well you all know I love tea and it solves everything right?!  We would tentatively peel back layers of comfifast bandage and hope for the best.  On a good day Alfie’s skin would be ok in the morning, on a bad day there would be something we needed to deal with such as a blister that needed bursting, an infection or some raw skin.  Im saying it was something we needed to deal with a bit matter-of-factly here but sometimes peeling off those bandages was scary as you just wouldn’t know what would be underneath.

After undressing him, we would cover his whole body in dermol 500 lotion which we used as a soap substitute and as it is anti-microbial, would help kill off any nasties on the skin.  We would then bath Alfie in water mixed with Dermol 600 or Oilatum plus bath emollient.  In those first few months he wasn’t in the bath long because his skin was still so new and fragile; too much soaking in the bath would have made his skin so fragile it would peel off.
After bathing, his skin would be patted dry (never rubbed because this would have taken the skin off) and we allowed his skin to get completely dry before we applied any cream.  After bathing, Alfie’s skin gets kind of soggy looking and it is really hard to get dry.  Air drying is the best way to get this done but it takes a while.

Once he was dry we would dress any burst blisters or raw areas with Mepilex and Mepitel dressings.  Then we would cover him completely in 50:50 ointment which is a mix of white soft paraffin and liquid paraffin.  If you have never seen this ointment, it is like a watery Vaseline and is super greasy. We would then cut strips of comfifast bandages for his arms and legs and I would make him a comfifast vest by measuring it on my arm (the distance from my inner elbow to my wrist was enough for his body) and a little comfifast hat.  We would soak the first layer of bandages in the ointment so they were saturated, apply them and then add another layer of ointment over the top.  We would then add another layer of bandage as a ‘dry’ layer although the ointment is so wet that it just soaks straight through.  For the first couple of months he wore all of his clothes inside out so the seams didn’t rub him.

All of his clothes (and ours) were covered in greasy ointment that never really comes out.  Alfie has literally left his mark.  Everything got covered in grease during those months. We joked that Alfie would be a rubbish burglar because he would leave a trail everywhere he went.

At every nappy change (so every couple of hours) we would be repeating the grease process, peeling back the top layer of bandages, applying more grease and applying a new top layer. If we went out we would have to make sure that we kept up with the routine, there was no skipping it because his skin would become very uncomfortable.

The night-time routine was not like those ones you read about in the baby manuals.  The bath, book, bottle, bed routine took much longer than if did for most babies.  Another bath, another load of grease, a few more metres of bandage and then milk, stories and bed!!
Every couple of hours at night we were both up, me on the milk machine, lee doing nappies and adding more grease.  This routine was sooooooo exhausting.  I’ve not even mentioned how Alfie was throughout a lot of this – he bloody hated it.  He hated being naked, he didn’t really like being bathed, he didn’t like being bandaged.  He cried a lot of the time throughout it all.  We used to make songs up and try to distract him with toys but in reality he was probably in a lot of pain and we just had to get through it as quick as we could.

If we went out for the day (or heaven forbid try to go away for a night) we had to take a huge amount of stuff with us.  Babies come with a lot of paraphernalia anyway but we had extra creams, bandages and all sorts of other stuff with us. 


During those first few weeks, the routine took us a good couple of hours, we got faster as time went on and we started to feel more comfortable with what we were doing.  We were so tired though.  A particularly low point was during one of those night time nappy changes, lee was thinking in code and I fell asleep standing up!  During another sleep deprived moment I got up in the middle of the night to go to the toilet, I must have fallen asleep because the next thing I knew I had fallen off the loo and banged my head on the shower door.  Lee thought this was a good time to play a practical joke and when I got back in bed and told him what happened, his response was “haven’t you been in the shower, why are you getting back in bed, it’s time to get up”  I actually got out of bed and started to get into the shower thinking it was morning.  He probably got a dead arm for that.  But it’s those stupid moments that we laugh at that got us through what was a tough time.

4 comments:

  1. Thanks for your blogg. It makes me rethink the last five years and I can see lot's of parallels... I had one of those falling-asleep-whilst-standing-experiences about half a year ago... I had to smirk a little bit...

    Please keep this blog going. I really enjoy it and think about writing my own

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    1. Glad you are enjoying the blog Markus. I will be carrying on with the blog after ichthyosis awareness month has finished but not every day haha! Definitely think about doing your own, I've really enjoyed it.

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  2. We also used to joke about Daniel being a rubbish burglar, 50:50 is the devil! how funny :) I'm so enjoying reading about your experiences :) xxxx

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    1. Can you imagine the trail they would leave!! :) glad you're enjoying it Emma xx

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