A letter from mum and dad

Ed, We will never forget certain things from this journey ever in our lives. On March 22, 2018 our lives changed forever. Watching our baby Emerald (7 months old) go into cardiac arrest and multi organ failure one hour after arriving at our local hospital, me just taking her because I thought she was sick, then it all went downhill from there. The NETs retrieval team was called in to take us to Westmead; Emerald suffered a seizure in Grafton from low blood sugar that resulted in a brain injury and fluid on her brain, needing life support. It took NETS another six hours to stabilise her to get on the plane. Emerald was blue and lifeless and no one thought she would make it; in that moment I thought my baby had died, then the next day eight hours after arrival at the children’s hospital, we had a diagnosis of a very rare CHD called ALCAPA that Emerald had been silently fighting for seven months and was never picked up. They took her for major open heart surgery at 8am on March 23; the longest day of my life. They told me to be prepared for the worst as they expected Emerald to come back on the ECMO (the double bypass machine for lungs and heart). 3pm came and Emmy was about to come out of surgery and she wasn’t on the machine! When the head surgeon sat me down and pretty much told me no one told him about her low blood sugar and Emerald suffered another seizure creating a complication for the surgery, yet she still didn’t come back on that machine, they kept telling me that she would end up on it to give her heart a rest; the next week was very touch and go, we almost lost our girl three more times but still no ECMO; Emerald was fighting so hard And the doctors telling me that her liver and kidneys won’t make it; she was so puffed up with fluid and so yellow from the jaundice and that they thought she had more seizures, but couldn’t tell because she was on the muscle relaxant, the only thought in my head was if she was going to be ok. I didn’t care if her brain injury resulted in her being a little more special, I just wanted to know she was ok – they couldn’t guarantee us anything and they still can’t. Emerald also contacted two blood infections, pneumonia from being on the life support and a collapsed lung. This experience has been very trying and testing and very traumatising and we feel so out of our comfort zone being here and almost 700km away from home. A few anxiety attacks from mum and dad over the last 5 weeks Some very touch and go moments I will never forget. We are slowly on the road to recovery, Emerald has astounded all her doctors with how far she has come and that she ever once stopped fighting. Emerald is a miracle five weeks post op and she is saying mum, hi, can do high 5; eating solids again and rolling over from side to side! I could not be standing here today beside my heart warrior if it wasn’t for the support from my family and friends and the entire community who has rallied around my daughter to help us. Thank you for all the donations and the prayers; we are truly blessed to have such caring kind hearted people in our lives and our little gem is fighting to get back to our little community so we can say thank you to everyone that has helped us. Thank you from the bottom of my heart. I know this journey still has a long, long way to go and the shock has worn off finally and is only just hitting me now, but every day is a step closer to home and Emmy is improving every single day. And I appreciate everything you all have done – Thank you. Thank you for never leaving Emerald in the dark. Jess and Kev – Emerald’s parents