Diagnosis and Unknown

There we stood in a world where we did not have a clue what was going on.  It was 3 weeks in and we were still in the neonatal unit living out of hospital, asking permission to touch our daughter and to change her nappy, scared we would do something wrong under the watchful eyes. This wasn’t how it was supposed to be, this wasn’t what we dreamed of,  our expectations were completely smashed. Our normal was going to be a new normal and we were completely petrified of what was ahead.

Hope – “a feeling of expectation and desire for a particular thing to happen”.  This is how we were currently living, living in hope. Consultants had been preparing us; that they were seeing worrying signs that Ruby had lasting brain injury, but we didn’t want to believe that, surely they were wrong, surely this wasn’t the case. This wasn’t in our plan, we hadn’t prepared for this, surely God would hear our prayers? God is a healer right? Everything would be ok right? 

The day Ruby was going to have an MRI of her brain, we still held out hope, prayed that she was ok and that the consultants had got it wrong, and we spoke psalm 139 over her life. We felt so helpless. I guess we felt that was all we could do. Ruby was wheeled away for her MRI and we patiently waited for her return, hating every moment she was out of our sight. The next few days were tough, waiting on the MRI  report. Knowing the results were there, Ruby’s future in picture form and we had to wait. We waited with hope, or maybe looking back, complete denial of what was going to be.

Five days later we sat in a small office, with our consultant and two nurses. I can remember exactly where everyone sat, the smell in the room, the sounds, the expression on everyones faces.  Something I will never forget. I think we knew deep down this wasn’t going to go the way we hoped. So on that day, in that office,  we were told that Ruby had suffered a severe brain injury, known as Hypoxic Ischemic Encephalopathy (HIE), which means injury from lack of oxygen to the brain. They were unable to say exactly what that would look like for Ruby but the likelihood of her walking, talking, seeing and feeding were extremely slim – her injury was severe. Everyone in the room was crying. What were we going to do? How were we going to manage? I’d have to quit my job, would we have enough money? Would our house be ok? Would we be able to look after her? Were we strong enough to do this? Panic set in and I couldn’t breathe, the fear had hit me like a truck. What was our world going to look like now and why were we the people chosen to be here?

Due to the severity of Ruby’s brain injury her diagnosis was extensive.  I feel like I have shared or listed Ruby’s many diagnosis hundreds of times, and here I list them again: Spastic Quadriplegic Cerebral Palsy, Dystonia, Dystonic Spasms, Multi Focal Epilepsy, Cortical Visual Impairment, Microcephaly and Gastro-oesophageal reflux.

This was our new world, but could we do it? Could we learn to tube feed Ruby? Would we get out in time for Christmas? Would we know how to look after her? Could we survive no sleep? This is my mind, my worrying anxious mind, which I guess you will come to know more about as I keep blogging. 

But I am a strong and determined person, and I made a promise to Ruby and myself that I would do whatever it took, no matter what. Step one was to learn how to tube feed Ruby and give her medication so we could take her home for Christmas. And thats what we did. We were there day and night doing all of Ruby’s care, learning and gaining confidence, we were determined to achieve our goal. 

And so, on the 16th of December 2012 we took Ruby home. We did it, we made it home for our first Christmas.