Reuben B's quilt (Quilt Closed)
Trains, animals, lego, bikes
When Reuben was born everything appeared ok until we came to feed him. He wouldn't suck and the milk just pooled in his mouth. He suddenly went grey/blue and needed attention quickly. A team of doctors and midwives worked on him for a while then everything seemed to be ok again. The midwife decided to try to feed him herself to see what happened and the same happened again but this time it took longer working on him to get him stable. He was rushed to the neonatal unit for further investigation. Later that day he was diagnosed with tracheo oesophageal fustula with oesophageal atresia after they had tried to pass an NG tube and it had coiled in his throat due to the top part of his oesophagus ending in a blind pouch with the bottom part attatched to his trachea. He was born unable to swallow so meant the milk had been overflowing to his trachea and his lungs were full of milk. They also said they were sure he had a hole in his heart too. He was transferred to a specialist childrens hospital an hour away. Once there his diagnosis was confirmed and we were told he would need major life saving surgery at a day old. The following day he received the surgery to cut the bottom of the pouch and the oesophagus away from the trachea then join them together to form an oesophagus that went from his throat to stomach. The surgery was very difficult due to the size of him and the distance between the two ends of his oesophagus. This left a very tight join and narrow oesophagus. Also in surgery his phrenic nerve had been damaged so his lung later collapsed and he needed a 2nd chest drain. He had many more scary moments as he spent 7 weeks in intensive care. He required oxygen and continued to not be able to be fed orally so continued being tube fed. He went back to theatre often to have his oesophagus dilated where the scar tissue shrank and caused him to choke on his own saliva. Once on the ward he spend a further 4/5 weeks going backwards and forwards to theatre and struggling to eat. While in hospital a cardiologist was visiting from the childrens heart unit where they put him on medication until they could see him properly after his discharge from hospital. Once we got him home it was time to focus on his heart and at 5 months old we took him for an ecg and echo. This is when we were told he had 4 problems with his heart and he would require open heart surgery to correct them. At 7 months old he had his surgery and as far as we knew it went well and his heart would recover and be like a healthy heart. We had regular checkups in the first few years then went to yearly checkups. Everything seemed fine until last year when he hsd his check up they found that the pulmonary stenosis has returned and he will require open heart surgery again in the near future.