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Maxi – Born 2 April 2011

My son Maxi is now 27 months, and when I look back from his birth I think how did I do it but I did. He was 4 days early and delivered by emergency c-section, he weighed 5lb 2.25 oz. He was tiny when he was born we didn’t hear him cry for what seemed like forever, then eventually he did and was brought to us at this point.

We were unaware he had just had 10 rescue breaths looking back probably to do with his tongue going back but we only found this out months later when his complex needs nurse told us. Maxi’s dad first thing he said when he met him was hasn’t only got a small jaw and my thought was what is wrong with his eyes. I wanted to breastfeed but still unaware of PRS, I tried and tried but he couldn’t latch on the nurses even tried him with a little cup but the milk just fell out of his mouth. 7 hours later just before visiting time a young lady Dr was doing the rounds and when she looked at Maxi, I saw her really concentrating on his face, my heart at this point stopped and I kept saying there’s something wrong isn’t there and that’s when she said to me had I ever heard of PRS.

To which my reply was no, she then left as the visitors came on the ward, my head was spinning I felt like my heat was going to stop.  Maxi’s dad was still unaware of what was unfolding as he had left around 1 hour after his birth to look after our 2 older sons and left the hospital the proud father of a perfectly healthy son for us to rest.

During visiting time the nurses from special baby care said could they take him to observe him as he hadn’t been feeding well. So off he went and he stayed there for 3 weeks were we learned to hold our baby prone to feed him through a tube in his nose, to watch our child day in and day out become very poorly and not coping very well so he had a npa tube inserted down one side of his nose, when he had this put in he could be held like any other baby sat in the car chair we had for him so basically look after him like my other 2 because he had the npa down one nostril and the feeding tube down the other.

He never took to bottle feeding and we were told it would be unlikely that he would  be fed orally. The months passed by and other problems reared there head his eyes where a big concern and he just seemed not to respond to anything in front of him, he had a brain scan the same day as a gastrostomy was fitted where the results said he was blind. I was heartbroken but felt this not to be true as weeks before the op I noticed little improvements, he seemed to respond to facial expressions reach out for things but I thought the Drs know best.

That was the 6th October 2011  and boy my child is a different child now, he crawls pulls himself up has had his cleft repaired, eating 3 meals a day, doesn’t eat finger food as he doesn’t like the feel, drinks out of tippy cups, loves to look through books with me as his eyesight has improved. I was told by the consultant in the Feb 2012 that what I was doing by constantly stimulating his eyes with flashing bright lights has done something and developed his eyes. I cannot tell you how my heart bursts with pride, love and admiration for my lil boy who seems to have proved everyone wrong with how he has come on leaps and bounds. And anyone reading this if you feel that you cant get through it trust me, I thought that and I thought the constant lump in my throat or the pain in my chest would never go, well it did and worry was replaced with hope for the future for my son that he will enjoy his life and it is my sole aim in life for him to fulfil his life to the max…