Smiley's Story, Part 2: Failure to thrive

Smiley was born on October 29th, 1996.  She weighed 875gms (1lb 15 ozs) and her Apgar scores were fairly good considering, but she was rushed straight to the NICU (neonatal intensive care unit).  Everyone left the delivery room.  The drama was over, but I was still in shock.  I went for a shower - the upside of no epidural - and then up to the ward.  Seven pair of curious eyes looked at me as I walked in with no baby.  I went to the bed, pulled the curtains, and prayed for sleep.

Later there were a few visitors.  And I will always be grateful to them.  I don’t know how other parents of premature babies feel, but I was hurt at being given so few cards, and absolutely no baby clothes.  Did everyone think that she would die?

There was one person that I was very happy to see - my friend from the pre-natal ward, whose baby was also in the NICU.  And so we went down together to see them.  Smiley was on an open incubator, she was so thin and tiny, not like a baby at all.  I couldn't touch her, I couldn't hold her, I couldn't help her in any way.  I felt sooo useless, yet I knew that I totally loved this baby with everything I had and I just willed her to live.

NICU was a confusing scary place.  Every time an alarm went off I would panic, thinking that my child was in danger, while the staff were more relaxed.  And I soon realised that alarms sounded almost continuously - you just had to stay calm.  There was a whole new language to learn: apnoea monitors, sats (as in oxygen) monitors, electrolyte levels, feeding tubes.  There were procedures to get used to, visiting times and the *joys* of the milk expressing room.  One thing did stand out.  On the label with all her details was the phrase ‘premature footling breech birth’.  I’d never heard of this before, and it was only later that I discovered the significance.

I went home after a short sleep, and fell into a new routine of home and hospital - work long forgotten. The days passed in a blur.  There was an early morning phone call when things went wrong, she had a bleed, but there was no noticeable change in her.  I cried, but none of it made any real sense, even after reading all the leaflets we were given.   Had I done something that could have caused this?  At 3 months pregnant I'd accidentally drank some day old milk in my coffee.  Could that have affected her development?  Or what about the sprained ankle a month later?

Poor Angel was in shock as well.  I thought I'd prepared her well for the birth of her sibling.  I explained that I would stop work at Christmas and that we would have a whole month of fun before her little brother or sister arrived in early February.  Imagine her shock when her Mammy disappeared into hospital in October!  RH was working shifts, so Angel stayed with whoever could take her.  Once Smiley was born she seemed to adjust faster than her parents.  She was given a colouring book for siblings of premature babies, and from the very start she made a big fuss of her little sister.  In those days siblings were allowed into NICU and Angel would sing and talk to Smiley - she even asked for an incubator for her dolls for Christmas.  Santa did not manage to find one, but he did get her a doll-sized set of syringes and feeding tubes.

We were encouraged to get Smiley baptised, but we refused.  It was like admitting that she might die and we couldn't do that.  The thought that she would one day be baptised in the same Church as her sister gave me something to hang onto.

Days turned into weeks, and we watched some of the other babies pass out Smiley: they were promoted to a lower dependency room.  My friend's baby went home and is now a happy healthy 13 year old.  We weren't really told why Smiley was still in NICU, just that she wasn't thriving.  There was one thing obviously wrong: her right hand was twisted, but as I said to RH, we could live with a damaged hand.  We were just so glad that she was alive.

Around this time, we were called to a meeting with a neurologist.  Most of what she said went straight over my head.  I was just so tired and scared for my little baby.  The neurologist mentioned cerebral palsy, in a very casual way as I recall.  She just dropped it into the conversation. Again it made no sense.  All I knew about cerebral palsy was the film My Left Foot, and surely Smiley wasn’t like that.

In the meantime I had to plan for Christmas.  It needed to be special for both of my children.  Santa even found his way to Smiley’s incubator and left a little teddy for her.  I bought the smallest Christmas dress in the whole of Dublin -  it was for a 5lb baby and reached nearly to her ankles. But I think she looks really cute in it!  We all visited, and took turns in holding her carefully, to avoid dislodging all the tubes and pipes: she was still so small and fragile.

Foolishly I made a pact with, well whoever is listening up there, that if Smiley reached 3lbs by Christmas Day, then everything would be okay.  Sadly, she didn't....