Our journey.... when my wife found out she was pregnant we had to wait for 5 weeks for a dating scan, we went for the dating scan and thought that she might be anything from 10 to 20 weeks pregnant. At our dating scan, we found out that she was 33 weeks pregnant and giving us little time to prepare for a newborn. However, Riley decided he had enough and decided to come at 34 weeks, Riley was born and placed in neonatal at Treliske for 3 days and on the day, they went to discharge him some noticed a whooshing noise upon listening to his heart. This was confirmed with a cardiologist and Riley was transferred up to St Micheal's in Bristol to be monitored. 

When he was in St Micheal's Riley was diagnosed with Tetralogy of Fallots (tof) with mapcas and has a vsd aswell. Riley was monitored for 2 weeks at St Micheals then was transferred back to Treliske to grow and become bigger. 

However Riley's stay in Treliske was brief after being there for a week Riley Sat's dropped dangerously and an emergency call to the watch team was made, and Riley was placed I'm an induced coma and transported up to Bristol children's and was placed in picu and was put on countless syringe drivers. Riley then bounced between Picu and dolphin ward for about 3 weeks before it was decided he need to be fitted for a stent. Once his stent was fitted Riley started to improve and was finally discharged on my birthday meaning mummy and Riley were finally coming home. 

Having a baby with a heart problem was so hard, being parents to a newborn is stressful enough however knowing they have a problem we become more attentive to him and would find ourselves overchecking on him in the cot and panicking over every couch and sneeze. 

Riley had plenty of support, we had cardiac nurses once a week. Regular doctor and hospital appointments which went on for about a year. 

Riley went to the cath lab at 9 months old, unfortunately, he ended up with a couple of viruses and had to continue his stay on dolphin for an extra week. Once discharged we headed back for home. 

A couple weeks later we were admitted in treliske as Riley had become ill again however a week he was discharged And then about 3 weeks after his first birthday he was readmitted due to his SATs becoming very low again. 

Upon not being able to get his Sat's back up Riley was admitted back into Bristol. 2 days after being readmitted when me and his brothers was on the way up to visit him Riley SATs crashed and he was placed into a induced coma and had an emergency cath lab where the hoped to open his stent more however the stent was pretty near enough completely opened so Riley was left sedated so they could keep his Sat's a bit higher and he was rushed in on the Monday for emergency open heart surgery. 

They surgery was a success, and Riley eventually made a good recovery was eventually sent back home. 

Within being home for a couple weeks with really doing well the community cardiac nurses were stopped and appointments we had monthly went to 6 monthly and we then felt slightly abandoned as everything stopped all the same time where we normally had an opportunity in asking about things. 

Thankfully Riley since then to now has been great, he has had 5 visits to the cath lab since but watching him become this fearless toddler, that is not afraid of anything has been amazing. 

Only people with cardiac kids and severely ill children will understand how much over-checking we do on them compared to our other children. You want to wrap them up bubble wrap to protect them from everything. It's also the siblings that struggle as we used to go on countless days out but now due to rileys conditions we sometimes find only person taking the siblings out while one stays at home with Riley because its raining or cold. Having a child cardiac problem during the cost of living crisis has been expensive. With heating costs rocketing but we like to ensure the house is kept warm and that he is safe and has everything that he needs. 

There is always a panic when your phone goes, I've found since having Riley or that we know his SATs can just drop so we have an emergency hospital bag packed just in case. 

All the sacrifices we make for him, are worth doing when we see him smiling and laughing. 

We are now awaiting open heart surgery number 2 which we should be given an indication on when this will be in the next month or so.

Heart Dad Ben