Feeling determined.

As I said in the previous post we began to entertain the idea of getting our wee man home. And I have to admit I was so ready for this. My patience was definitely wearing thin, there were days it was all I could do to get out of bed and head down that M1 and do it all again for another day.  But you do it don’t you? You do anything for your children. Elijah needed us. He was doing his very best every day and so must we.

I told the doctors we wanted to go home as soon as possible – tell me, train me in whatever I needed to know and let us home. As friends and family would tell you I am the least medically minded person I know…..I have to lie down when they’re taking blood to check my iron levels, I faint regularly and can never tune in to Casualty or any such programs for fear I might boke. But, here I was telling them, ‘I will learn to do whatever it takes, just let us home’!  So, over the next couple of weeks, I learnt how to draw up medicines in the tiniest little syringes you ever did see – some of Elijah’s medicines were doses of 0.4ml /1.3ml / 0.7ml….who even knew you could take such a small dose?! And do you know how frustrating it is when you get a little air bubble in a syringe when you’re drawing up 0.3ml! And how it has to be ‘just so’ an extra 0.1ml or a missing 0.1ml can make a huge difference! I learnt how to flush his feeding tube and know just how much was enough to clear his tube, yet not too much as he was fluid restricted.  I learnt how to check the ph of that feeding tube …I now know what ‘aspirate’ means and became familiar with how to get a good one! We became familiar with giving a little ‘waft’ of oxygen when he needed it, I know, I know, we are so down with all the correct terminology (??!) We learnt to spot the signs that Elijah might have gone into SVT and even got given our own stethoscopes! (who said you needed straight A’s for one of those?!)  We got training in resuscitation, which by the way is something that I would highly recommend for all parents out there – scary as it was, with moments of, “if I don’t laugh at this I will cry”, I spent the whole time thinking all parents should know this! Gosh, never mind parents –  all people!

With all our ‘medical’ training complete we got ready to bring our wee man home.  We progressed from walks around the hospital with no monitors, to taking him to the hospital coffee dock. And honestly, while that sounds like such a minor thing, it was so exciting! I was on cloud 9.  My heart thumped the entire time with nerves, but I was loving it.

We made life on the ward as ‘normal’ as possible bringing in all the ‘normal’ baby stuff from home – bouncers, toys, books, his buggy, mobiles.  In my head,  I planned out little daily routines for him, like a wee daily planner which had play time, and bath time, massage time and tummy time, music time and story time.  Elijah LOVED the singing, he loved us doing the actions of the nursery rhymes with him – his absolute favourite was Incy Wincy Spider, especially when you lifted his wee hands up over his head as Incy climbed the water spout and when poor Incy got washed out??? Well….All.The.Smiles as you tickled under his chin (s!!)


The time came then for day trips. Elijah’s first trip out of the hospital was to Granny and Granda’s house.  Our household were suffering from a dose of the cold, so we decided to stay clear of there and head to my folks. I’ll never forget getting the car loaded up with all his bits and pieces and mummy helping me out of the hospital.  I was so, so nervous, but so, so delighted. Elijah’s chubby cheeks wobbled the whole way down the motorway! And what a lovely day we had. Elijah was good as gold. He LOVED being ‘out’ and actually cried when we took him back to the ward. He too was ready for home! And for the next week or so, we tried to get out and about with him every day with the plan to come home a few days before Jonah, Seth and Leah would start back to school. Finally Elijah could meet the whole family!

August was a pretty good month and one which I look back on with much joy! Many days, although still in hospital, were wonderful! We really enjoyed our little newborn – life as a family of 6 was starting to look like the dream that we had been hoping and planning for. Elijah was smiling and playing and recognised and got excited when he saw us, or his brothers and sister and Granny! He was starting to outgrow all the ‘tiny baby’ and newborn clothes.  We were learning what he enjoyed and what he didn’t. We could see his little personality really starting to shine through.  I began to think, if I could just get this wee man home, we’d be fine. We’d prove all these doctors wrong, we’d blow them away with what we would achieve! We could and would do this – please just let me, let me take care of him, let me work with him. I will do my very best, whatever Elijah needs I will do, whatever difficulties they foresee him having with his heart we WILL overcome. I was determined that he was going to be ok. I was determined that together Elijah and I would prove everyone wrong.

2 thoughts on “Feeling determined.

  1. Karen, you write with such eloquence of the heartache, but also so importantly, the joy that Elijah brought to you. I hope that the writing of your journey together helps ease the pain in some way. Xx

    Liked by 1 person

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