Ashley Nielsen

❤️‍ An update on our beautiful, brave Kai. Yesterday afternoon, our little Kai underwent major heart surgery to repair his coarctation of the aorta, a congenital heart defect that causes a severe narrowing of the body’s main artery. His surgery was performed through a left thoracotomy, which involves making an incision on the left side of his chest, between his ribs, to access his aorta. The surgeon removed the narrowed section and reconnected the healthy ends, allowing blood to flow more freely through his little body. While the surgery itself is behind us, Kai’s recovery has been incredibly challenging. One of our biggest concerns right now is his extremely high blood pressure. Following this type of surgery, elevated blood pressure can place significant strain on the newly repaired section of his aorta, increasing the risk of bleeding and other serious complications. Kai is currently receiving a powerful intravenous medication called sodium nitroprusside (SNP) to help bring his blood pressure down. He is already on a dose of 4, which his doctors have told us is the highest they are comfortable administering, yet his blood pressure remains concerningly high. Another heartbreaking part of his recovery has been watching him experience so much pain. A thoracotomy is an incredibly painful procedure, particularly for someone so tiny. The incision, the movement of the ribs and the trauma to the surrounding muscles and nerves can cause significant postoperative pain. Last night, my beautiful baby screamed in agony. Despite receiving significant doses of pain medication, he was still in so much discomfort. And my mumma heart is absolutely shattered. There is nothing more unnatural than standing beside your baby’s hospital bed, listening to him cry and not being able to simply scoop him into your arms, hold him against your chest and make everything better. Every instinct in my body is telling me to pick him up, to comfort him, to protect him. But right now, all I can do is stand beside him, hold his tiny hand and remind him that Mummy is here. Kai was born at just 32 weeks, weighing only 1.4kg. He underwent his first heart procedure at just nine days old and now, at only six weeks corrected age, he has endured another major operation. He has already experienced more in his short little life than most of us ever will. I am so incredibly proud of him but I am also heartbroken that he has had to be this brave. We are praying desperately that his blood pressure stabilises, that his pain becomes manageable, that his little body begins to heal and that there are no further complications. Please continue to keep our beautiful Kai in your prayers. Pray for comfort, healing, stable blood pressure and strength for his little body. Please also pray for the incredible doctors and nurses caring for him. Thank you to everyone who has supported our family, donated, shared our story or simply kept us in your thoughts. We are so grateful. Come on, baby boy. You’ve fought so hard to get here❤️‍ now let’s get you back home

An update from the Soffer Family Kai and Joey have officially been discharged from hospital and have spent the past few days at home. Having all four of our boys under the same roof again is something we will never take for granted. Kai and Joey are both putting on weight, getting stronger every day and settling into life at home beautifully. In just two weeks, however, our family will pack our bags once again and make the journey back to Sydney, where Kai will undergo his second heart surgery at The Children’s Hospital at Westmead. This surgery will repair Kai’s Coarctation of the Aorta (CoA) the narrowing in the main artery that carries blood from his heart to the rest of his body. His surgeons plan to access his aorta through an incision on the side of his chest, between his ribs and surgically repair the narrowed section so blood can flow more freely through his little body. The aorta is the largest artery in the body, responsible for carrying oxygen-rich blood from the heart to the brain, organs, arms and legs. With CoA a section of the aorta is abnormally narrow, almost like a kink or pinch in a hose. This narrowing makes it harder for blood to flow through the body and means the heart has to work much harder to pump blood past it. CoA is an uncommon congenital heart defect, with Australian data reporting approximately 3 babies in every 10,000 births. Although surgery will repair the narrowing in Kai’s aorta, his heart journey won’t simply end after surgery. Kai will require lifelong cardiology care and follow-up to monitor his heart, blood pressure and repaired aorta as he grows. It is incredibly difficult knowing that after finally bringing our babies home, we will soon have to hand our little boy over to his surgical team again ❤️‍ We don’t yet know exactly how long we will be away from home this time or what Kai’s recovery will look like but we are incredibly grateful to live in Australia and to know that our boy is in the hands of an amazing cardiac team. Until then, we are soaking in our little bubble. Holding our babies a little tighter. Enjoying having our family together. Celebrating every little milestone. Thank you from the bottom of our hearts, for the continued prayers, messages and support you have shown our family throughout all of this. It has carried us through some of the hardest weeks of our lives. Please continue to keep our brave little Kai in your prayers as we approach his next surgery. ❤️‍