Thinking about everything that has happened in the past year.
A year ago was my partner's 20 week scan where we found out that something was wrong with our son's heart. It took a few more weeks to get the proper diagnosis and found out it was something called Transposition of the Greater Arteries (or TGA for short). Essentially, his heart was developing incorrectly, resulting in the blood between the lungs and heart being completely separate to the rest of the body (if you imagine the bloodflow of a normal body as a figure 8, his was two separate circles). Thankfully, the way the heart works while the foetus develops is different, there are open valves and blood mixes instead. This meant he was safe until it was born, where this valve would naturally close. If not treated, his cells would essentially suffocate - luckily, there are treatments and we had a plan in place with the Women's Hospital and the Children's Hospital.
A c-section was planned, then he would start receiving a drug that keeps this valve open then get transported via ambulance to the children's hospital and stabilised (which then needed a balloon operation to make another hole, as the medicine wasn't enough). His mum had to stay at the women's hospital, so it was just me that was at the children's hospital for the first night (they ended up convincing me to go to the Ronald McDonald house so I could rest and be ready for tomorrow, I felt awful leaving him but the nurses pointed out that I'll be even less helpful if I don't rest). His mum was able to come over the next day and properly meet him.
They kept him on his medication for two and a half weeks until he was ready for open heart surgery to re-wire his heart. The wait was agonising (8 hours) but he got through it and then amazed everyone by recovering extremely quickly and we were back home a week after that.
He had a check up a week after and everything looked good, then six weeks after that, they spotted an irregularity. It turned out that one of his arteries had slipped and was causing issues with one of his valves. The problem requited another surgery, but they couldn't tell us what surgery they were planning as they didn't know what they would do until they actually saw his heart visually (they told us the three likely options). The team had only encountered this issue once before and they have no idea why he wasn't noticeably ill (he acted like there was nothing wrong), although the solutions are surgeries they'd all done. This surgery was closer to 10 hours and, while he spoiled us the first time, the second time he was on the ventilator for much longer, and failed coming off it and had to go back on, but managed to go down to the next level of breathing support. The doctors told us to prepare to be there for months.
But out son had other plans. On the level of breathing support he was on, they have to remove it every now and then (as they take him off the fentanyl he was on at this stage, he could start feeling the discomfort, but also started smiling and recognising us again). He had a period of one hour when a doctor spotted its sats and told the nurses to see how long he could cope before they started dipping again. He never went back on the breathing support. He still has a leaky valve, so they weaned him off the IV medication and moved him onto an oral one, which meant going home, which happened just before Christmas.
He's had a few check-ups since and is doing well. He's still on medicine for his valve, but they said that they've seen much worse cases fully heal over time. While his growth took an impact, his development seems to be doing extremely well. He's 8 months and is holding on to object to stand himself up already! It's been a tough journey, but without it all he wouldn't be the same person.
And here, hold my beer.
