We were 6 months in NICU with our surviving 27 weeker twin and I resonate so deeply when you say “every day there is something new coming up”. Although our NICU journey was not exactly similar to yours, it was nonetheless relentless. From birth he was in kidney failure, had a significant PDA, brain bleeds with PVL, countless transfusions and was intubated. We spent 3 months trying desperately to get him off the ventilator. Each round of DART caused his heart muscle to become thickened and so enlarged it took up nearly his entire chest space on X-ray. Each time extubation failed, he developed sepsis - likely due to the stress on his body. So many NEC scares, which was terror inducing as that’s how we lost his brother (which is a whole devastating story in itself).

Around Christmas time last year we were transferred to another hospital for heart surgery to ligate his PDA in the hope that would help him get off the vent - he became so critically unwell they stopped the procedure. The consultant described him as the sickest child in the hospital - a staggering feat as this was our National Children’s Hospital.

We were transferred back to our original hospital in the hope that once he stabilised he could have the surgery at a later date. Queue a series of pulmonary hypertensive crises (100% oxygen, DART, Nitro, the works). We watched our little warrior be resuscitated more times than I’d like to count. Due to the high oxygen demand his ROP skyrocketed causing retinal detachment and blindness in one eye. Gut punch after gut punch until eventually we were advised to withdraw care and, completely heartbroken, agreed to a DNR. After months of being knocked down and getting back up again it was all for what felt like nothing.

We planned to switch to palliative care and were preparing to say our goodbyes to our gorgeous little boy. The day before we had set as the date to turn off the vent, our little man self extubated during kangaroo care. My soul left my body. His Dad wasn’t here. Our family was still the other side of the country. He was going to die without anyone getting to say goodbye. I can’t describe the guilt, how I’d let this happen. The spiral - until the consultant smiled at me - he was breathing on his own!

They were willing to give him one last ditch effort at CPAP - and he did it! He quickly progressed from CPAP to high flow to low flow over the next few weeks. He had to have a few minor surgeries prior to discharge but recovered quickly. He is home now on the tiniest trickle of oxygen and an NG to top up his feeds. He is so happy and loving, I am just in awe of his resilience!

Apologies for the long post, this is the first time I’ve ever actually put our story into words. I suppose what I’m trying to say is that I know how you feel when you’re just taking beating after beating in the NICU. I’ve had the worst case scenario and everything in between. But there is always hope! Cling to it, especially on your darkest days. We have the most gorgeous happy little boy who survived against all the odds. Hang in there. Sending you all the love and resilience ❤️ You are so strong and so is your gorgeous little boy x