Tuesday, 28 September 2010

Just found this beautiful pic of Monkey post op October 2006

Just sorting through some old files and came across this picture.  This is Monkey (with monkey), mid October 2006.  I went on maternity leave a few days before he went into hospital to have a gastrostomy (tube into his tummy to help him feed).  

We'd always fed Monkey orally and only a couple of times had to have an NG (Nasogastric) tube passed when he'd had chest infections and become too tired to feed himself.  But it's fair to say that it was never easy to feed him.  That said, it was one of the things I loved to do the most.  Something 'normal' we could do together.  I'd do something (feed him) and in return, he'd do something (swallow (sort of and sometimes)).  He responded to different flavours.  You could tell he loved cake!  However as Monkey got bigger, it was hard to get enough food into him for him to keep growing without us spending every waking hour feeding.  No fun for anyone.  And as much as I loved the feeding, there were days when it was so hard that I would cry. 

Our wonderful peadiatrician had mentioned a gastrostomy a few times and I had resisted but, with a new baby arriving any day, I knew it was the practical solution.  We still agonised over it.  Sometimes I think about the decisions I have to make today (should I have a fixed rate mortgage or a tracker mortgage?) and I'm reminded that whilst these might be important in some respects they are nothing like the decisions we have to take when we are talking about the health or care of other people we love.

We were booked into Leicester and in we went.  They were fab. 

I remember how I felt as the anaethetist put Monkey to sleep.  Still unsure whether this would be the right decision for him and wondering whether I was being selfish putting him through this - was it all for me?  Was it for the new baby?  Worried, though not overly, about the chance that Monkey might not make it through the operation (there were no specific reasons to worry but I guess general aneastheics carry a risk).  I remember getting into the lift and going down to the canteen.  There was someone in the lift with us.  As soon as they got it, I made one of those noises you make when you're trying to hold in a cry but it escapes.

I remember being reasonably irrational and cross with my husband who wasn't beating himself up about whether this was the right decision.  Wasn't feeling the guilt that I was.  But was feeling hungry!!!!

I remember going back up to the recovery area and hearing Monkey cry in pain before I could see him.  I thought it was him but wasn't quite sure - it was a cry that I had not heard before.

He was fine.  He recovered well from the operation - so did I!  I stayed in every night, sleeping beside him.  36 weeks pregnant and 5 days on a ready bed on an NHS ward.  I got up for a wee every night and the nurses were keen to check I hadn't gone into labour.

I found it really hard to look at the tube in his tummy for a while and I remember my Dad coming to see us (actually on the day he was being discharged) and not being able to look either.  I still felt guilty.  At that stage I didn't know what a godsend it would be. 

We were very lucky.  Monkey healed well and tolerated his feeds from day 1 (other than being quite sick occassionally if that makes sense).  We came home as planned.  Pickle arrived by c-section 2 weeks later, as planned.  And we moved house 10 days after that.

The gastrostomy definitely made all of our lives easier.  Oral feeding could be about tastes, rather than nutrition.  I don't have regrets as such but if I had my time again, I'd have done 2 things - we'd have had the gastrostomy a bit sooner and I would have done more oral feeding afterwards.  We were lazy some days (maybe tired, maybe busy but sometimes lazy) and Monkey didn't get to taste food every meal time and I think he might have liked that.

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