Thursday, April 11, 2013

The first two weeks...

Almost 2 years ago, to the day, Daniel & I found out we were expecting our first baby.  We were close to half way through our big UK / European holiday (in Dublin actually) when we found out I was 7 weeks pregnant.  I had a completely 'normal' pregnancy, nothing out of the ordinary, not that I had anything to compare it to, but as far as we were aware we were having a healthy baby, a girl in-fact, due December 8th, 2011.

November 23rd, 2011 came by, I woke up at 5am as my waters were breaking (in bed) and contractions started soon after.  My birth plan was to have a natural labour and delivery, and a healthy baby and mum at the end of it.  19 hours of natural labour went by when I ended up having an emergency c-section, emergency in the sense that it was not planned, not that anything was wrong; I was stuck at 9 cm for close to 5 hours with no further progress.  1:07am, Thursday, November 24th, 2011 Lyla Poppy entered the world... But not as healthy as we were expecting.  This period of time was a blur for me, actually the first couple of weeks of Lyla's life is a blur to me.  Lyla was born, and as far as I knew she was 100% ok and required special care because that was what c-section babies usually required.  I was in recovery when I began to be bombarded with random questions from nurses like 'was your pregnancy normal?' or, 'did you take any drugs or medication during your pregnancy?'.  It was pretty apparent to the nurses and doctors that something was not quite right with Lyla.

Several hours later Lyla was brought to my room for a feed, which was unsuccessful.  A few hours later I was visited by a doctor who broke my heart when he said Lyla was not well, exact words I no longer remember but he was with me for some time, slowly killing me.  A few minutes later my husband and mum arrived and I somehow had to tell them what I was just told.  I was finally able to get out of bed, have a shower and go around to the special care nursery and see my daughter, she had a naso-gastric tube inserted, but she was perfect and beautiful and no matter what anyone said to us, or the amount of bad news we received it did not change how we felt for her, 'healthy' or not.

That night Lyla and myself were transferred from Lyell McEwin hospital to Women's and Children's Hospital, where she spent the next week in ICU and SCBU.  Lyla underwent a number of MRI's, EEG's, lumbar punctures, blood tests, x-rays, eye tests, muscle tests and anything else that they could possibly do to her during that first week; and we were met with a range of doctors and specialists, who all had some kind of bad news to share with us.  We were told Lyla's brain had not fully developed which will leave her severely disabled and her life expectancy would be anywhere between a few months to 1 year.  We fought to get her home as soon as possible, but firstly she required another stay at Lyell McEwin Hospital.  Another week on we were able to bring Lyla home and we quickly settled into everyday life.


Lyla is now 16 months old, beautiful, cheeky, feisty, for the most part healthy, but most importantly, alive!  She has not hit any of the major milestones, but that means nothing to us, it just makes you appreciate the smaller things she can do... Like the first time she opened her hand (slightly), or tracked us as we walked past her, which was only 7 or so months ago.  These are the things people take for granted, but for us, these are the biggest achievements. 

No one can ever prepare themselves to be blessed with a disabled child, yes blessed!  And even though we had no prior warning, Lyla was welcomed into our family just like any child. 

I hope by starting this I can shed some light on disability and let people know it is not a disgusting thing, and these special children are no different from any other child, though they may look a little different, or walk a little differently, or eat a little differently.   I also hope by spreading some of the little knowledge I have, will help families who may be in similar situations and let them know they're not alone and there is amazing support out there.



  1. Beautiful... Jess you are amazing !! I'm so happy that the beautiful little lyla has you and Daniel as her parents. so many peopme would take this situation and turn it into such a negative.Just proves you both are wonderful people. I'm looking forward to reading more of your blogs.

  2. Jess you are so correct. What I wonder is what is normal, and What is people's interpretation of human life. I really believe that every human can learn and teach other's yet ONLY if they are open to this. Fear is such a strong emotion and if only more people like yourselves, your family and friends could embrace the unknown I wonder if the world would look at all humans as an opportunity for learning? I'm sure this has been a massive part of your journey. Your baby girl is so lucky to have parents that advocate for children with additional needs and you should feel proud as I'm sure you do of your courage to post this to enable strength for others.
    Take care, I look forward to reading your updates on your princess.

    Sharee xxx

  3. Jess, my niece Tammy had a baby James who had a very rare disease called Krabbe's and died 12 years ago he was not quite 3, they had no idea how long he would live but we were blessed to have him visit us in Tas from SA when he was 2, he toured the state with his Mum, Grandma and Great Grandma and us so in his short life he travelled on a plane and toured TAS, he like Lyla was a very special baby. I look forward to reading more of Lyla's journey - Sonya xxx