We almost lost Natalie to BPD three times in the NICU. Whilst other babies with BPD were going home around their due date, Natalie was still intubated and fighting every minute for her life. I used to wonder how something so common in prematurity could be this bad for my child? With the first time we almost lost her, I remember our confidence in her tenacity was wavering. News from the doctor was the first time I truly felt despair with the situation. I still remember every detail of that conversation, he said "Our backs are up against a wall, there isn't anything left we can do." That day changed us as parents. Our anxiety went through the roof, we were in survival mode, it was the first time we prayed together. Our baby was so sick from BPD we had to stay in the sterile, lifeless room inside the NICU intended for parents who couldn't go home because the situation was that dire. We barely slept a wink waiting for the hollow footsteps to come down the hallway to give us bad news. Thankfully after a long night we woke to her oxygen requirements reducing from 95% to 80% which was the step in the right direction we needed, and within days she was extubated to CPAP. Thinking the worst was behind us, we couldn't imagine what was to come. 

When it was good, it was baseline, when it was bad, it was catastrophic. About 2 weeks after her first battle with BPD, we walked into the NICU and had made a habit of checking the red light on the ceiling in the hallway outside her pod. That red light meant the nurse had hit the emergency button for a Code Blue. The light was on. We turned the corner to at least 8 medical staff hovering around her, her incubator lid was up and they had intubated her again. The carbon dioxide in her blood was at such a high level that it was turning her blood acidic and damaging her organs. Her lungs weren't working like they should. Every ventilator was tried, paralytic drugs were used to try and keep her still but nothing was working. I remember the doctor turning to me and saying "There is a really good chance we are going to lose Natalie today." I turned around to call our parents to come say their goodbyes when I saw portable white walls in the hallway outside her room. I called our Revenend to baptise Natalie instead. Hours had gone by and the doctors had run out of options to help her. Natalie was deteriorating further and they insisted that now is the time to hold Natalie if we wanted her to pass in my arms. The portable white walls went up around us and that goodbye cuddle lasted 11 hours and by way of a miracle, all her vent settings dropped and her CO2 was back within normal range. After that day, we didn't celebrate or enjoy the good times because we didn't trust they'd stay that way, we were preparing for the next set of bad news and it was exhausting. 

Natalie was intubated for 5 weeks to gain weight for a scope to see if there were any issues with her airway or lungs to prevent her coming off the ventilator. She was diagnosed with mild tracheomalacia and was extubated successfully the next day. Over the next two months she very slowly weaned her breathing support down to PBF of 50ml which she came home after 164 days in hospital. Natalie had many issues stemming from Bronchopulmonary Dysplasia, including being intubated for 8 weeks total, anaemia needing upwards of 8 blood transfusions, growth restriction, hypertension, seizures, mild tracheomalacia, nil by mouth due to suspected NEC multiple times, Stage 3 ROP requiring laser surgery due to the amount of oxygen she required and mild hearing loss on the right side from one of the ventilators used.