Friday, 17 August 2012

Skye's Story

I am reposting this about Skye, my friend Ruth's daughter born at 27 weeks gestation just a couple of weeks before Joseph. She has spastic diplegic cerebral palsy. Skye has recently had a consultation and her team feel that she would benefit from a surgery called Selective Dorsal Rhizotomy. Skye's mum Ruth will do a more in depth post about this at a later stage. In summary SDR is performed regularly in the States where it is accepted as a treatment for this type of cerebral palsy. NICE, the body that assesses and approves procedures, has stated that there is insufficient evidence to approve this surgery. This means that parents need to self fund this procedure.

Skye's family need to raise £40 000 for this surgery. I would be so happy if readers of my blog could help to make a dent in this figure. I also hope to do some fundraising events too. If you are in the position to help please do so here.

Thank you so much for reading. I have met Skye a couple of times, and she truly is a gem of a child, and extremely bright, and I know she would benefit so much from this surgery.

Skye's Story

Everything progressed normally with my pregnancy as 2009 began.  I was excited, but refused to get too emotionally attached to the baby growing inside me until I reached 24 weeks – viability in my eyes.   Also, I didn’t like to decorate, etc ‘just in case’.  There was absolutely no reason to think that the pregnancy would be anything other than perfectly routine and unexciting, but still the magic 24 weeks seemed to take forever to arrive.  After 24 weeks we began to prepare the house for the baby – beginning with our room as that would be where baby would spend the first few months.

During the Easter holiday I mucked in with preparing the bedroom for the plasterer - I scraped wallpaper off the walls.  As the first week went on I began to get some pains at night.  It was waves of discomfort, not unlike period pains.  It would ease off overnight, so I chose to ignore it and assume it was just pains as my body adapted to its extra passenger.  I did begin to do less DIY though!  We went away with friends over the Easter weekend.  Whenever I did too much walking the pains would increase, but by morning they’d ease off.  I phoned the delivery suite at the hospital once we were home, expecting to be told it was perfectly normal, and instead they told me to come in.  I went in and they monitored me for a while before telling me that I’d simply done too much DIY and I should go home and take it easy.

On Monday 20th April 2009 I went into work.  Throughout the day I was having waves of pain so severe I could barely stand straight.  I kept reassuring my colleagues that it was simply that I’d done too much over the holiday, that I would be fine in a while.  That night they became even more painful and I experienced a small amount of blood loss, so I called the hospital again.  Back in we went!  They monitored me again and told me it all seemed fine but that the consultant would take a look.

He told me that they were going to try to stop my contractions, that I had very little cervical length left and that they were going to give me steroid injections and send me to the larger hospital 7 miles away.  His words were ‘Your first goal is to get there without delivering!’  At this point terror began to set in – I was 27 weeks pregnant and suddenly someone was talking about contractions and having a baby!  Luckily the drug they gave me to stop my contractions worked and as the ambulance drove the 7 miles, my contractions slowed down and stopped.

The next day the consultant came to tell me I had an infection and would have to deliver the baby the following day.  However, he also added that there were no special care cots available, and that the nurses would have to phone the hospitals around to find one which had space and facilities to cope with such a small baby.  4 hours later, I was told I was transferring 75 miles to the closest hospital they could find with space!
I was transferred by ambulance and once there they told me they wouldn’t keep giving me the drugs to stop labour.  Apparently it wasn’t the way things were done in this PCT!  The next day passed in a haze of monitoring, at the end of which they told me I didn’t have an infection, I didn’t need to deliver the baby and so they were going to send me home the following day – after a more detailed scan of the baby as it was measuring small for my dates.

That evening, the familiar aches started again.  By midnight they were really ramping up and there was more blood loss.  I called for the midwife who told me that I was fine – I wasn’t having contractions at all and not to be silly.  When she realised how regular they were she decided to call a doctor to do an internal exam to check all was fine.  I was 3cm dilated so we headed down to delivery!

By the time they had found a heartbeat, I was fully dilated and ready to deliver.  I was told to push with the next contraction, so I did.  I remember the midwife saying ‘Slow down!’ and thinking ‘How am I supposed to do THAT?!’ before the midwife caught the baby!  I was thinking ‘It’s pink!  It’s screaming!’  I hadn’t expected either of those things.  As the baby was put inside a plastic bag to retain warmth and moisture all I could see was arms and legs pushing against the bag, and I thought ‘Feisty – a good sign!’

The midwife suddenly thought to ask whether baby was a boy or a girl and we were amazed to hear it was a girl – we’d assumed it would be a boy!  By the time we had agreed on her name – Skye Elizabeth – she had been ventilated, packaged in a plastic bag and incubator and was on her way upstairs to the SCBU ward.
I was able to stay in the hospital for a week, at which point they had to discharge me.  Luckily, due to our circumstances, my husband was also permitted to stay in my room for the week.  After that we were left to find ourselves hotel accommodation.  We spent each day at her side, updating friends and family daily through a photo website.

We had been warned that there would be good days and bad days.  The first bad day was on Day 4 when we were told she had an infection and needed a blood test to check her out and she might need a blood transfusion (luckily antibiotics worked quickly and she needed nothing else).  After this, however, we only seemed to have good days – the doctors were all really pleased with her, and she was doing very well.  This in itself made me feel guilty – I could see friends we had made in Special Care going through tough times with their babies, while we were having an ‘easy ride’.  All we wanted was to have her closer to home!
3 weeks after her birth, we received the news that she was being transferred back.  We had to learn the routines and rules of the new unit, but we were so pleased to be home.  Exactly one week later she was transferred again – from the higher level care at the larger hospital to the local SCBU ward.  I remember the feeling of shock I received when a baby went home from this room – it was a room babies went home from – soon it would be our turn!

We spent 5 weeks in that ward.  They felt like forever.  We gave her her first bath, we tackled breastfeeding, she moved from incubator to hot cot and then to a normal cot.  We even tried ‘rooming in’ to prove she was ready to go home.  What a disaster!  We stayed in a room on the ward, and had Skye in with us.  She didn’t sleep, wouldn’t feed and simply screamed the whole time.  At 4am I took her to the nursery in desperation and sobbed as one of the nurses cup fed her for me and suggested I go back to the room to get some sleep.  I felt useless – I was her mother but I couldn’t feed her or look after her.

Throughout the next week, however, her breastfeeding improved and we began to think that we might be going home soon.  A few days later, I went into the unit and was told she couldn’t go home until she’d done 24-48 hours without her feeding tube in, that she refused to cup feed anymore because she wanted to suck and that I should agree to let her have a bottle overnight otherwise she wouldn’t feed.  I was reluctant but was about to agree because it was the only way I could see of getting her home.  

Another nurse came along and asked me if I wanted to take her home.  When I said yes, she persuaded the doctor on the round that Skye was ready to go home, that she would feed fine once we were home, and that he should discharge her.


At 4 o’clock on Friday 26th June 2009, we left the SCBU for the last time – but this time we took our daughter with us!  She was 9 weeks and 1 day old, which made her 36 weeks and 5 days gestational age.

15 comments:

  1. Just as emotional reading it now Ruth as it was hearing about it when she was born. Truly a little miracle and still fighting yet! Go Skye, Ruth and John x x

    ReplyDelete
  2. Thank you Kylie for allowing me to share our story. Little did I know, back then in April 2009 how many lifelong friends I'd meet thanks to the little scrap of life fighting to come home. :)

    ReplyDelete
  3. I remember seeing the early photos of Skye on the photo website - I was shocked at how small she was but I thought 'what a beautiful, tiny baby' and I so, so wanted her to fight - which she did. It was lovely to meet Skye last year and see how much she had come on since those first pictures, just lovely!

    ReplyDelete
  4. Getting to know Skye, Ruth and John over the past couple of years has been one of the priviliges of my job and I have to say as Skye gets ready to go on to playgroup I'm so impressed and delighted by her and her parents they've brightened my life and I will always keep in touch.
    Love you guys,
    Mandy Whitefield
    Battledown Child Development Centre

    ReplyDelete
  5. It just shows how strong our little fighters are, and should never be written off. You and John have done a wonderful job, raising and bringing her on, she is a gorgeous little girl and she will continue to thrive. It has been a joy meeting you all and Skye is lush! xx

    ReplyDelete
  6. Usually, a brand new website takes about six months to one year to appear in
    the SERPs of Google, assuming the service provider is worth their salt.
    B) SEO basics - Image 2: Select-'English' and
    'All Countries and Territories'. Users normally tend to visit websites that
    are at the top of this list as they perceive those to be more relevant to the query.
    Out of those 6 keywords, further reduce the number of keywords.
    Is professional search engine marketing the thing that you need.

    The major preference is for offshore SEO companies as they offer SEO at the most competitive prices.
    Pages and articles are very different, as far as Joomla is concerned.
    This is because there is a stiff competition in this particular field and the market
    is flooded with lots of firms that provide proficient
    SEO experts India services at the economical costs. Google bowling messes up the
    external ranking used by Google and penalizes a sites ranking compared
    it the competitors. ) of links. Those who work on introduced SEO power suite,
    they choose best SEO tools among various tools available in the market.

    Still hanging on. Basically, if you create links to your website with "ink cartridges" or "printer cartridges" in the
    anchor text, it will help move your website up on the search results
    for those key words. Here you will need an SEO agency such as Webfirm to try and run
    damage limitation. Create a general, high-level category in which you want to manage all phrases'for example 'global,' 'online,
    ' 'channel,' and so on. SEO defined. In fact, soon, not using RDFa could put a site at a disadvantage. However with passing time the complexity in this field has increased and performing an SEO task is not a simple thing to do. What is the magic formula. Yahoo style guide.

    Also visit my web blog; expose.me
    Also see my web page > relevant internet page

    ReplyDelete
  7. Moreover, over the internet there are 2 main versions of
    this game that is the RA deluxe with 10 pay lines and the classic RA with 9 pay lines.
    "Path of Monstrosity" - This is for players that want a
    little better defense and wanting to hit multiple targets.
    This setup offer players a medium amount of flexibility over their hit or win line selection.


    Also visit my homepage :: Www.Wwfew.Radabg.com

    ReplyDelete
  8. Have yоu eѵer сοnsidеrеd creating an eboоk or gueѕt authoгing οn othеr
    ѕitеs? I hаve а blog bаseԁ upοn on
    the ѕame topics уou diѕcusѕ anԁ woulԁ really liκe
    to hаνe you share some stοrieѕ/infοrmation.
    I κnoω my visitors wоuld appгeciatе your work.

    If уou aгe even remotelу inteгested, feеl free to senԁ me an e-maіl.



    Hеre is my рage - chelm.naszespotkanie.pl
    My webpage - myvideo downloader

    ReplyDelete
  9. Awesome site you have here but I was wanting to know
    if you knew of any forums that cover the same topics talked about in this article?
    I'd really like to be a part of online community where I can get feedback from other knowledgeable individuals that share the same interest. If you have any recommendations, please let me know. Appreciate it!

    Here is my website: thaimedicalvacation.com

    ReplyDelete
  10. Тhanks a lot for sharing this ωіth all pеople you гeally realize ωhat you're talking about! Bookmarked. Please additionally talk over with my site =). We will have a hyperlink trade arrangement between us

    Also visit my blog post Www.Freepressrelease24.com

    ReplyDelete
  11. I realize that there is not a ton of variety in this list,
    since Rogue and i - Net - Hack are essentially the same and
    Sorcerer #1 and #2 are more overtly the same. One way to test yourself is to deal yourself hand after hand in front of a mirror and watch
    yourself as you react to the cards. In our next article, we'll be tackling using SNES4i - Phone to do exactly that - play those old favorites, like Chono Trigger, Super Ghouls and Ghosts, or even Super Mario Bros 3.

    Look at my website kostenlos spiele spielen
    Also see my webpage > internetradio

    ReplyDelete
  12. Hold down an app for a second, and start turning off all the apps that you aren't using by pressing the "minus" button. Remove other nearby wireless devices, such as a cordless or cellular telephone and make sure the mouse is at least eight inches away from a wireless keyboard. Aside from these types of power packs, you can even choose the 8-cell and also 12-cell electric battery.

    My web blog youtube videos downloaden
    My web page - http://identi.ca/irissusan12

    ReplyDelete
  13. For some people, renting those games was another option, which yet
    again burns a hole in their pocket. Naturally the
    ideal situation is to be able to lose weight really fast
    with a little amount of discomfort. Even when things seem hopeless, Kiko's narration provides some great comedy relief.

    My web-site; kostenlos spielen ohne anmeldung

    ReplyDelete
  14. Wacom is probably the first stop for such a device, although Aiptek also make some of
    the most popular tablets on the market. The popularity of online multiplayer seems to have overshadowed the
    experience of playing with someone who is sitting next to you.
    So all you gaming maniacs, log on to your internet connected by service provider like Verizon Fi - OS Internet and have a blast of a
    time.

    Here is my website click the up coming web site
    my web page :: please click the next website page

    ReplyDelete
  15. Searching for the Ultimate Dating Site? Join and find your perfect match.

    ReplyDelete