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J.D, G and me

Reality bites

Last night when J.D woke up and I laid him down to change his nappy and empty his bag, it struck me how though this has become our normal, it really is a very big thing. His small intestine exits through his stomach, is stitched to his abdomen, his large intestine the same on the opposite side. It is the former which releases waste. His colon is currently pretty redundant, producing nothing more than mucous, shrivelled and awaiting revival. Although we are used to the sight of a fleshy, red & bulbous nodule sitting on his body, I still find it difficult to think of him in terms of his organs, to imagine him laid out on an operating table, mid-laparotamy, deft and skilled fingers working on his bowel. My precious boy.

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A very brief history

I’m not sure where I’m going with this blog – it’s initial aim is to provide some catharsis in times of great anxiety and confusion. This involves my pregnancy, our son’s birth and subsequent health problems.

There are moments when the enormity of our child’s beginning, his first moments as an air-breathing infant wrenched from inside of me, all of a sudden feel overwhelming. These days are awe-inspiring for anybody but for parents who witness their baby deteriorate into acute illness, in my experience, they become even blurrier and dream-like.

The day after our son was successfully operated on and we knew he was, at the very least, safe from the immediate harm of a gangrenous colon, I remember walking outside of the hospital and being warmed by the sun. I looked at the flowers of the bedding plants and I found the colours staggering. I was amazed by the glory of nature. I felt lucky. I was so relieved that our son had survived this emergency procedure at a couple of days old that the simplicity of some petals arranged on a stem was breathtaking.

Our son, who I shall call JD, is now a healthy five and a half month old baby. He has two stomas which we are currently awaiting to hear about the reversal of. He was born full-term (ten days over my due date) at a very healthy weight by emergency c-section after I failed to progress from over nine and a half centimetres. He was actually stuck and I would have been unable to deliver him naturally. I’m not going to go into any more detail here – there will be time for that and we are still working out a lot of what happened immediately after his birth. We did manage to cuddle and bond for the first day of his life before he was recognised as needing further care.

I would like to be able to connect with other parents who have had babies in PICU, NICU, or with other parents who have been through similar or dissimilar with their babies or older children. I’m not sure how often I will update or exactly what it will be about when I do but I’m hoping I will use this as a place to explore my thoughts and feelings as we approach our sons second, and hopefully last, surgery.

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