Caiden was born on 27/05/2010. We waited 9 years for Caiden and the pregnancy and delivery was all normal however as soon as he was born he needed help to start breathing (as do lots of babies we were reassured) and he was checked over and all seemed perfect we were discharged.
Caiden breathed very noisily and his chest did cave with every breath but we were reassured this was mucus and would clear. However it seemed to get worse. So much so we never laid him in his crib as he really seemed to struggle. I slept with him on me, me sitting up and his back against my chest and me holding his head up and this quieten his breathing (we now know was because hold his airway in best position, maternal instincts hey!!) We carried on concerned, but every midwife said the same......
Day 11 my friend was holding him and he just stopped breathing and went an awful grey colour. Frantic I grabbed him and lifted chin up (so start first aid) but his colour came back almost instantly. I rang the doctors who told me to bring him down in the morning (even after what just happened, even explained about family history and how we lost a brother from breathing problems as a baby) they still couldn't see him.
I drove down and stormed into the first available doctor's room (can't believe to this day I done that) Doctor agreed something wasn't right, so sent us up the hospital. We were put in this room And left as by this point he seemed fine!!!! However His SATs machine kept alarming while I was feeding him (didn't even know what a SATs machine was at that time) and nurses kept silencing it and then all changed, one nurse came in to silence it, she saw his chest caving and within minutes my room was full of people. I had to stop feeding and he cried and cried eyes boring into mine...
That was the last time we were to hear him cry although we didn't know it at the time. We were rushed to HDU, as he stopped responding and turning to a shade of grey again and I was crying/ screaming. Thought I was losing him there and then. I had my arm through a sea of doctors and nurses and consultants all I could feel was his forearm. I didn't know what was happening but room was filled with panic.
When people moved a little I got to him better and my baby went from one little sats probe on his foot to needles in every limb. Wires all over his chest and head. Machines beeping everywhere we were terrified. Not long after he was intubated, and wrapped in cotton wool place in a special pod to transfer to a specialist hospital. I explained family history and they agreed must be linked and knowing my brother died with same problem was agonising.
Weeks passed while he was on life support machine. He finally had a operation and came back with his trachiotomys. Our son as we knew him wasn't anymore. Our lives changed in a split second. We had to break it to his two older siblings and family and deal with it ourselves and learn how to care for him. It was the toughest time. I look back now and can't believe how far we've come. At one point we were living hour to hour. But he grew stronger and stronger. We discovered he also had severe hearing loss, and hyposadias which required a few ops and still isn't right to this day
Caiden is a lively 4 year old now who's first language is BSL although in last 6 months has managed to find a voice - amazing to hear his voice for the first time. (now he doesn't stop!!!) Funny moment at one of out clinic appointments when the consultant said I needed to accept for the forseeable future Caiden can't talk....to which Caiden butted in "Yes I can talk"!!!
He has proved the doctors and nurses wrong time and time again for which I am so grateful. We had days we feared we would never bring him home. He is so full of spirit and enthusiasm for life and touches everyone who meets him in a special way. We have a long road ahead with fair few operations sadly planned, but I know he will continue to amaze and surprise those doctors xx