Smiley's Story Part 3 - Living in the Hospital

Smiley's story began with Born Too Soon and Failure to Thrive .  I know it's been two years, but here is Part 3....

After Christmas, everything began to look more hopeful.  Smiley was promoted from intensive care to high dependency, and began to feed and take bottles - my milk dried up after 6 weeks so breast-feeding was not an option.  She still had breathing problems, heart irregularities, possible sight problems, and electrolyte imbalances, but apart from that, all seemed to be going well.  Three weeks later she was moved to the Paediatric Unit, usually the last stop before home, where babies get used to a routine of sleeping and feeding.  But not Smiley.  New problems emerged.  Spiky temperatures that did not respond to antibiotics.  Wet nappies but mild dehydration.  She was so small and placid that I missed these signs, I was not aware that anything was wrong.  But I have to try not to think about how much she might have been suffering: she would have been dehydrating between feeds, how horrible is that for a tiny baby?  It seems that the nursing staff were baffled too.  It took a weekend locum to spot the symptoms of a rare and dangerous condition - diabetes insipidus - and within hours she was transferred to the local children's hospital.  I don't know who the locum was, but she probably saved Smiley's life, or at least prevented her disabilities from getting worse.  

And so began two years when the local children's hospital became our second home.  During that time Smiley's life hung in the balance many many times and we never strayed more than a 30 minute drive from the hospital.  I don't think I could say a bad word against the place.  Her consultant always looked on the bright side - "just don't let her drink too many pints of Guinness when she's older, and she'll be fine," - and worked with me to bypass hospital admin: he let me type up urgent letters and faxes.  He would sign and stamp them and I would get them in the post.  Even now she is remembered by hospital staff and on the very rare occasion that we have to visit A&E, someone always comes down to say hello.

The ward was a narrow corridor with lots of tiny rooms, one for each child.  Room for a cot, a chair, a washhand basin and little more.  Utilitarian, they made me think of monk's cells.  It is the sound of the ward that I will always remember: it was never quiet.  Even when the babies stopped crying, there would always be the beep beep beep of the equipment, the urgent alarms on the sats monitors*, the whoooosh of feeding and suction machines, and the low murmur of nurses' voices.

The saddest part was that some of the babies had no visitors.  Perhaps their parents found the problems facing them were too overwhelming.  I never knew:  it was not spoken about.  

But even with all the fear and worry, for me it was a place of hope. A place of transition. Another step on the long road home.   

For two months the wonderful doctors and nurses battled to stabilise our tiny baby.  Bloods were taken almost every day, until she looked like a junkie and became terrified of anyone in a white coat.  She enjoyed her bottles, but problems with reflux and breathing were on-going, and I still remember the day when she choked on her milk and I screamed as she turned purple in my arms.  Staff came running from all directions and whisked her off to be resuscitated.  I have never been so afraid in my life and poor Angel had to go home with her play-school teacher that day as I was in no fit state to drive.

Yet at the end of March it was decided that we could try and manage her at home.  Lots of training was provided, and a huge box of equipment and medications.  Everything had to be carefully recorded and monitored, including her input (everything she drank) and output (wee and sick) and I had to weigh her every day.  

I was so happy to have her at home and took her out everywhere in the pram and proudly showed her off, even though she looked a little odd, with her huge head and her tiny arms and legs.  She was happy too, and she showed it: a few days after she came home I was cuddling her in the rocking chair after a feed when she looked up at me, opened her eyes wide and the most glorious smile lit up her face.  I burst into tears.  I had not known if she would ever smile, so it was just amazing.  Once I stopped crying I picked up the phone and rang my Mum.  Then I cried again!  In that moment I really believed that everything was going to to be fine....

*oxygen saturation monitoring machine.  Levels tend to fluctuate in very sick and premature babies.  Ideally should be about 97% to 100%.  Smiley varied between 85% and 95% when she was well and worse when she was sick.

21 comments extreme preemies, hospitals, premature babies, smiles, Smiley

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