In 2012 I was pregnant with a little boy called Dylan, he was perfect in every way. Unfortunately Dylan became very poorly soon after he was born and we lost him 2 days later in NICU. The inquest showed he died from un-natural causes. When I fell pregnant with Taylor I was so scared, we had plenty of scans which were all perfect until we had a cardiac scan. It showed Taylor had tetralogy of fallot with other complications. All I could think about was I couldn't bury another child. We had chromosome tests done which were clear. So we decided to give Taylor a fighting chance. When he was born, he was perfect and pink and he only spent 24 hours in nicu.
Taylor had open heart surgery at 3 months old, he spent 12 days in picu and hdu. I found this so hard to see my baby with all these machines and tubes. It just reminded me of Dylan the year before and I just kept praying so hard not to lose him. He luckily recovered well. He has been in hospital from bronchitis very often since his op as he gets poorly very easily.
He has echoes every 4 months at the moment. This year he has had 2 eye surgeries and was put to sleep for an MRI as well. The MRI has showed he needs further heart surgery soon. We will be organising his next heart op on the 30th, also his eyes have had no improvement so he is being booked in on the 26th for further surgery. He goes to a special needs nursery also to help with his delay in his development. He is 2 and 4 months and is only now starting to say words. He also has a Portage worker who comes every week to work with him one to one.
Taylor is a very happy little boy, he brings so much joy and happiness to us. I'm sure Dylan watches over him.