Well it's arrived and one very excited little boy opened it this evening!! What can I say, he absolutely loves it thank you so much from the bottom of my heart. All the hard work everyone has put in and continues to put in for other children, is simply amazing.
I cannot thank everyone enough for all they have done and continue to do on a daily basis. Ethan was so excited and thrilled to receive his special parcel and spent lots of time examining each square in turn. He loves it and cant wait to sleep under it tonight. Thank you again everyone xx
Ethan is looking forward to sleeping with it after he inspected it when it was open :-)
Ethan was born 16th October, 18 days overdue. It was like he knew what was about to come. On the 18th October I was feeding him and knew there was something was not quite right with him. Later that night one of the midwives came in and checked on us and noticed his breathing wasn't right. She thought it might be an infection and he was seen by a paediatrician. The paediatrician examined him and decided he needed to go to the neonatal ward for a few more tests and he was taken upstairs at 11pm.
At 4am the paediatrician came back with a consultant and midwife and explained that Ethan's heart wasn't working correctly and he had gone into organ failure. They explained that the retrieval team were on their way and that he had to go to London to have an operation. On 19th October he had his first heart surgery which took 3 hours in total.
The operation did not go according to plan and the machine burst his valve causing major leakage in the heart and they would need to see how he did over the next few days. It was quite tense for the next 3 days and in the end they realised he couldn't cope on his own, he would require open heart surgery.
The next operation took place on 25th October, it took 8 hours, they had to remove his valve and replace it with a donor valve which should have lasted him a couple of years. Ethan on the other hand, had different ideas and at our first checkup we were told that the valve had disintegrated and he needed to have another open heart surgery.
They were trying to avoid this one as it was quite a big surgery and carried a huge risk too, but it couldn't be avoided anymore.
At 4 months Ethan had the Ross procedure, we put our baby's life in the hands of the surgeons once again and he went down for 9 hours. This was the most terrifying experience and wait of our lives, we didn't know what to do or where to go so we waited in the hospital for news.
Eventually the doctor came to get us and told us that the operation went as well as can be expected but again that the next 2 hours would be crucial.
Thankfully he made it through, he is on medication and will remain on medication throughout his life. He will need more surgery at some point in his life but for now his consultant is happy with his progress and happy for us to monitor him at home. He is required to go for checkups every 4 months because some of his valves are leaky.
He is the most amazing boy I know and I am very very proud to say that he is my son.