.My baby boy was born at 31 weeks in July 2020 by emergency ceasearian where we were both very lucky to make it. Casper weighed 1.05kg (2lb 5oz) When he first arrived, other than being early we were not aware anything else was wrong, scans were always normal and no abnormalities were found. 
Due to being this early, he was needing to spend some time in Neonatal care. In the midst of a pandemic, meant there were certain rules. This meant me and his dad were never able to be with him together for the first 8 weeks and his big sister was not allowed to meet him.
After his first week in Neonatal, the hospital heard a murmur in his heart so they decided to do an echo. After this, we were called in by the cardiologist and told he had coarctation of the aorta and holes in his heart. We were told there was surgery to fix this but he would have to reach a certain size and weight before this surgery would be able to go ahead so this meant there was a risk he wouldn't survive long enough to grow for the operation.
Suddenly, our precious boy was moved into critical care and put on drugs to help his heart that would make him so sleepy he would even forget to breathe, causing him to need permanent oxygen support. 
He spent 6 more weeks in Neonatal having blood transfusions, long lines, a tube in every limb which made it hard to even hold him. He battled two bouts of sepsis, stopped breathing twice on us but he continued to keep fighting and grow, despite all he was going through. 
After these 6 weeks, he was transferred up to the paediatric cardiac ward where he was scanned to check on the condition of his heart. They decided that the coarctation was no longer the issue but the holes were now the main concern. 
This meant after a couple of weeks of weaning him off the drugs and starting his feeds, we were allowed to take him home for the first time. 9 weeks after him being born. 
He was discharged home in September with oxygen supplies, being tube fed and a LOT of medication. It was now just a waiting game until he reached at least 5kg to be able to have his life saving operation. 
Fast forward to 12th December, where we were getting prepared and excited for his first Christmas and we then received a phonecall offering us a surgery date for the 22nd December. Because we had been previously told during a check up that his VSD had got bigger, we decided to take the earlier date. 
On the morning of 22nd we both took Casper down to theatre absolutely terrified and feeling sick to our stomachs that it would be the last time we saw our baby alive although we never said those words to eachother. We held it together whilst we watched him be put to sleep kissed him and kept him calm and then handed him over to the surgeons for his open heart surgery. Once that door was closed we both broke down. Knowing that they would have to saw our baby open and stop his heart to fix him and help save him to be able to have a normal life was the worst feeling!
We waited 6 long hours for him to come out of his open heart surgery, the surgeon came to speak to us to tell us the surgery was finished and that he was being taken to P.I.C.U and we'd be able to see him in a few hours. He also explained to us the operation hadn't gone as well as they hoped and as they closed the VSD other holes opened and they ended up working on his heart alot more than planned. They also struggled to oxygenate his him after he came off the bi pass machine.
This meant he would spend a lot more time in P.I.C.U sedated and on a ventilator rather that the two or three days we were originally told.
 I can't describe the feeling we felt when we walked into that ward and saw our beautiful brave boy attached to these big machines that were keeping him alive and breathing for him, 11 different infusions, chest drains, blood transfusions running,  a pacemaker! As we leant over to give him a kiss on his almost unrecognisable swollen face he was freezing cold as they were having to keep him cool to slow everything down and protect him from damage to the brain and help with swelling. 
We would spend the next 8 days just watching him all day everyday making very very slow progress as his heart was struggling to cope with the new way of working after working over time for the first time months of his life. It felt like we were waiting forever but after 8 days they finally woke him and extubated and we got to see our little hero awake and breathing on his own! After a few more weeks in hospital recovering and going from strength to strength our boy was allowed home.
Casper has been through so much in his 7 months and not a day goes by that we are in awe of our beautiful boy. His bravery and strength is like nothing we've ever seen. We've seen heard and met so many heart warrior babies in our time at Southampton hospital and its not until it happens to you and your family that you realise how many babies are effected by CHD.
We have been through alot as a family and the memories and trauma or what we've watched Casper go through will never leave us but we are one of the lucky families and our baby has made it through but some families aren't as fortunate. 
Thank you for reading our story if you can spare even a couple of pounds for this amazing cause then it would mean alot to alot of people.  
Thank you 
Danielle, Adam, Casper and Ruby xxx