Phoenix Henry Kneller was born on the 09 March 2013, at 36 weeks. For the first hour of his birth everything seemed fine and he was perfect. Then he started to make this horrible grunting noise and he couldn’t seem to feed and breath at the same time. Before we knew it he was taken to NICU. The doctors told us he had Respiratory Distress Syndrome and he was ventilated for three days. He stayed in NICU for nine days in total and then was allowed home. It was wonderful having him home, but in the back of my head I knew something wasn’t right. For him to be born at 36 weeks gestation and despite me having the steroid injections to strengthen his lungs, for him to still have RDS made me wonder whether there was something more going on with his airways. Phoenix made these noises when he breathed. I used to call him my little goat!! People thought it was cute and the doctors at the local hospital told me it was normal for a baby to make noises like that. It took us along time to establish a good feeding pattern with him, he seemed to guzzle so fast as if he was struggling to breathe at the same time. Still doctors told me it was normal.
At his 8 week check our GP noticed he had an inguinal hernia which would need operating on. We went to The Royal London Hospital to have his hernia repair on the 23rd July 2013.
Whilst he was under, the anaesthetist realised she couldn’t fit the correct size ventilation tube in his airway. Suddenly his hernia was fixed but his airways were compromised. I felt like screaming ‘I told you so!!’
On the 6th September Phoenix underwent his first MLB. He was diagnosed with congenital subglottic stenosis, a laryngeal cleft and laryngomalacia. He had a balloon dilation as well. He is booked in for another MLB on the 29th November.
Nothing was properly explained to us about these conditions and we have had to do all our own research. Phoenix chokes when he drinks and eats, he has had a swallow study done but we would like it done again with weaning foods instead of just milk as I am unable to feed him 7 month jars without him gagging. His breathing is noisy and laboured. Some nights he goes blue around his lips for a few minutes. He never really cries and his voice is very quiet. I used to believe i had been blessed with a quiet baby but after some research i have realised he may need speech therapy as the stenosis can affect his voice.
After much arguing and rowing we finally have an appointment at Great Ormond Street Hospital on the 11th December. Hopefully we will get some more answers.
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