When your first year isn't as you expect...

Lucinda Hutton of Nurturing Mums talks to us about dealing with a year of hospital visits

I mean I know they say the first year isn’t easy…. I run a postnatal course for goodness sake.  I meet new mums all the time and one of the greatest part of my jobs is reassuring new mums that it will be okay, they will get through it and I love seeing them ‘on the other side’ for a glass of wine and a catch up how those hazy days are a distant memory, but the fact I’d helped them (through my course) through those tough times meant a lot.  Problem is, the tough times for me continue.  I’m sleeping less now than I did when my son was new born (he’s now 14 months) and it’s hard to see the light at the end of the tunnel…

 
 

My first year as a mum has been what reads as a catalogue of mishaps, one after the other.   My son was born (at term) with immature lungs.  A week -long stint in intensive care and we thought we were over the worst of it.  I cannot describe the feeling of having your first born child whipped away from you at 2 hours old to an incubator in a neonatal intensive care unit.  That wasn’t a place for my children, gosh those poor children… I naively thought before we found ourselves trudging in and out of there. All these parents looked helpless, numb and that’s exactly how I felt on 17 December 2014.  I couldn’t breathe, I couldn’t think and I couldn’t see how it was fair.  8 hours after having a c-section I was up and in a wheelchair sat staring at his perfect little face which was obstructed by tubes and wires and terrifying looking hospital apparatus.  I truly thought I was over the worst of it when a week later we were allowed to go home…

Glass half full

That’s the thing… I’m a cup half full, relaxed, it’ll be okay kind of person, although I’ve become a bit unstuck as this year has been far from okay.   My son didn’t feed.  I bottle fed thanks to a nasty bout of mastitis that made me look like Dolly Parton with a botched boob job.   Having a baby who doesn’t drink their milk, the only thing keeping them alive, is stressful to say the least.   Check-ups got more depressing as he fell through the centile charts.  After lots of investigations, lots of sick and a long mis-diagnosed Cow’s Milk Protein Allergy (“CMPA”), we saw some small improvements.   I can write this now as if this happened over night. It wasn’t until my son was 8 months old before he was diagnosed with CMPA.  8 long months of day-in, day-out encouraging him to drink his milk.  4 months of trying to get him to eat solids after being advised to early wean with little success.  

He then got a cough.  A nagging cough that wouldn’t go away for months.  I knew something was wrong, but no-one could put their finger on it until it had gone too far.  At 10 months, we ended up in a week-long hospital stay when my son had pneumonia.  We were in hospital for another week, but as soon as he was on intravenous antibiotics he was so much better.  

The problem is, nothing prepared me for our latest hospital stint.  6 weeks in hospital for bronchiolitis.  Intensive care wards were where we spent our Christmas and New Year.  Investigations, operations and there is apparently still nothing fundamentally wrong with my son.  Brilliant – but why has this all happened?  Who knows! 

We are now at home with him on oxygen, physiotherapy twice daily and unfortunately still quite a bit of sick.  He’s also being pump fed through a peg in his stomach to bolster his calorie intake.  All this interference means a lot of sleepless nights for him and for us.   I know it’s normal, but it is us… for now.  Being in hospital itself is horrible for your child, but it’s also not something parents’  of ill children really talk about. For those of you who have spent time in hospital, here are some of the things I found difficult (and I was lucky enough to be in a private hospital):

What I found

  • Being called ‘Mum’.  I have a name and it is Lucinda.  Understandably, not every nurse, doctor & person helping my son could learn my name, but the policy of being called ‘mum’ all the time I really struggled with.  I’m also a woman,  wife, sister, daughter, lawyer, business owner and this lack of identity bugged me.  Blame lack of sleep.
  • Lack of privacy.  It’s no secret I’m partial to the odd glass of wine.  When my son went to sleep at 7pm and I sat in a dark room on my own and treated myself to a glass of wine, I couldn’t help but feel guilty when the nurses came to check on him and I don’t love being seen in my PJs by strangers.
  • You will never get used to seeing your child hooked up to equipment, wires or anything else.  But it is amazing seeing how resilient they are….
  • Endless amounts of television were a must.   It’s educational… right?!  Although I must admit I didn’t’ realise cbeebies showed the same shows morning and afternoon.
  • It’s ok to find it hard.  It’s taken me a long time to admit to myself that I have an ill child and things aren’t great – acceptance has made things easier.  
  • It can be hard on your marriage.  My husband and I didn’t share a bed, or much real conversation for 6 weeks.   A holiday is in order.

How do you cope?  That’s what everyone asks.  The answer is I don’t see it as coping, I am surviving at the moment and trying to make the best of the good times.  Trust me, I don’t feel good all the time, far from it, but having to give up my work as a lawyer (for the time being) and running Nurturing Mums is getting me through… for now at least.

Lucinda Hutton runs Nurturing Mums, a North London postnatal course for new mums with babies 0-9m.  This popular postnatal course runs for 5 weeks and experts offer support and non-judgemental advice on sleep & routines, weaning, baby development and first aid.

Upcoming Courses

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