Friday, March 16, 2012

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.

20 comments:

  1. I wasn't blogging when you wrote parts one and two so it's been amazing to sit down this morning and read through all three of these stories... I'm sat here crying my eyes out (damn pregnancy hormones) at what you went through - and here's me moaning I have some sort of bug this morning.

    That photo of Smiley is just gorgeous - no wonder you were, and are, so proud of your little girl.

    xxx

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  2. @SAHMlovingit - Oh I didn't mean to upset you. I'm writing her story to raise awareness of, well all sorts of things and because it doesn't look like she'll be able to do it herself. There's more to come I'm afraid! Thinking of you and hoping the last few weeks of your pregnancy go well xxx

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  3. And to think of where she is now is truly amazing. I used to work in a hospital san some of the babies who had parents that didn't visit gave their children up or left them there to go back on the streets. Very sad. I could never understand it.

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  4. I always found hospital staff in childrens wards completely wonderful.

    I'm so glad she smiled.

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  5. @theaandnatesmam - I'm sorry xxxx

    @Lizbeth - I couldn't understand that either.

    @Suburbia - Me too :)

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  6. a smile can make your day and make your heart melt - smiley is aptly named then?

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  7. It's amazing how just a smile can mean everything. Lovely part of the story. Awaiting the next installment.

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  8. I missed parts 1 and 2, really a touching story - got a lump in my throat. You have a beautiful writing style btw love reading your posts.

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  9. Beautiful - now I know why you call your little girl Smiley x

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  10. I was glued to every word. What an incredible journey she, and you, have been on and such a beautiful photo too! It must be extremely difficult to spot warning signs in babies so tiny and with such medical issues.

    xx Jazzy

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  11. @h0peful mummy - she is :)

    @Midlife Singlemum - oh good, I'll try and make it less than 2 years this time :)

    @Idiodyncratic Dad - thank you so much

    @Jane Gregory - that was just the start x

    @jazzygal - yes it is.

    By the way, I *think* that photo may have been taken before the 'proper' smile happened. Sorry I can't remember, but it is 15 years ago :)

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  12. Such a stressful time for you and your family. Thanks for sharing your story, it has been really interesting to read.

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  13. I've finally started writing my essay so I went back to read all of Smiley's story.....as a mother I'm struggling to find the words to describe how it's made me feel. I can't imagine how I'd have coped in the same situation. Thank you for writing it. I assume the next instalment will be up well after I submit my assignments but I still look forward to reading it.

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  14. @Di - Sorry I missed your comment earlier and thanks for reading again xx

    @Lisa S - Yes, I plan to keep writing her story, but at this stage I have to write carefully and accurately, which means checking back through a lot of documentation :)

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  15. I have just caught up on all 3 “episodes” of Smiley’s story only now… Woa! is all I can say.

    What a journey…

    And those dam “Sats”! I so remember watching those numbers for 5 long weeks after Cathal was born, in the 70’s most of the time… until they touched on 50 on a late afternoon Saturday and he was wisked away…. I’ll never forget the utter panic I felt, and the white face of my daughter! We were so worried sick, none of us could speak! His heart surgery was due to take place the following Monday morning, but it happened in the early hours of the Sunday morning, as he would not have made it until the Monday. And then the joy, the utter pure joy of seeing the Sats registering at 100 for the first time a few days later!

    I so understand how difficult it can be for you to write about this. I still get VERY emotional thinking back of those 6 first weeks, and the other 6 difficult weeks he had just a year later with the Open Heart Surgery.

    I also understand how poor Smiley would be terrified of anyone in a white coat! There is no doubt in our mind that Cathal’s difficulties in socialising in some situations are a direct result of the trauma resulting his stint in Crumlin at 12 months old!

    But her smile is so so very beautiful!

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  16. @Nan P. - I hope it wasn't too upsetting for you to read this, and there's more to come! It's a story I HAVE to tell. I know just how desperately awful it is to have your child whisked away because their life is in danger...thank you for reading Nan xxx

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  17. Yes it was upsetting reading these posts. But not in a bad way: I think that sometimes, when I am in the right frame of mind, I need to go back and remember. It helps make sense of it, and heal the pain we all felt then. I am sure your need to write it, slowly, at your own pace, is also part of that healing process. We have all been traumatised: you, Smiley and Angel. Cathal, his parents and I. Shedding a tear every now and then is all very positive in the end.

    Plus I find it helps me be even more grateful for what we now have, for how well Cathal is, for every visit to the cardiologist when his parents are told “see you in so many months…”

    Looking forward to the follow on to Smiley’s Story :-)

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  18. gorgeous photo. and she's still smiling! :)

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  19. @Nan P - So glad that Cathal is well now xx

    @Steph - She certainly is :)

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