Arriving at Arlo’s bedside the next day I felt numb. It’s hard to say why, I just did. The strain of the past few days hadn’t helped. As I gazed at my little fighter I felt something shift. He didn’t have the same air of determination he had previously had . He looked tired and drawn, he seemed to be struggling to maintain his oxygen levels, his sats machine constantly shouting; thirsty for more. His little body drinking oxygen like there was no tomorrow. His vent settings were constantly creeping up and he was requiring boost, after boost, after boost of 100% oxygen. I thought we’d hit rock bottom, but just as the dust settled there and I waited for...
There was no trend in the families needing the expertise of the neonatal unit. Families from all walks of life found themselves pressing the security buzzer on the neonatal unit door. They stood there, just like us, impatiently waiting, imagining the worst because the nurses have taken 10 seconds longer to answer the buzzer, or worse still it has rung off. In those few extra seconds your heart rate rises by 100bpm. The only thing you can think is that they are having to work on your baby because something is terribly wrong. In that moment that’s all you’ve got. In reality it could be that they’re administering medication, a nurse may be on their break and all other sterile...
From the moment of diagnosis we had everything crossed that things were going to move forward. From the moment of treatment we were on the edge of our seats waiting for something to happen, for something to change, for Arlo’s daily blood tests to show some form of white blood cell. In neonatal there was always something to be aiming towards, always a goal in mind. We would have loved that goal to be home. But at the moment, that was only a pipedream. Every day I sat there biting my nails, waiting for that moment when we would be told Arlo had a white blood cell. At this moment one was all we were asking for. One would be...
Hemophagocytic Lymphohistiocytosis Yeah… What the title says! HEE-moh-Fa-goh-SIH-tik LIM-foh-HIS-tee-oh-sy-TOH-sis HLH for short. I walked into the neonatal unit the day after Arlo had his bone marrow aspirate. I was there unusually late that evening. That afternoon I had popped into Liverpool for supplies, nappies and cotton wool for the most part, but also some food and supplies too. I had taken the bus there and back and before going back to the flat I called in to see Arlo, feeling incredibly guilty about nipping to town for an hour or so and not being with him. The white lights seemed harsh against the dark sky outside. Normally at this time, unless there was a reason for...
Arlo had everyone baffled the whole way through pregnancy, birth and neonatal intensive care. He defeated all the odds over and over again. He was still struggling with his breathing and was still ventilated due to his premature lungs, but he was improving all the time. However, there was still a massive question mark hanging over Arlo… Why did he not have any white blood cells? Why was he not producing enough of his own red blood cells? Sometimes premature babies require blood transfusions during their neonatal stay. By this point I had actually lost count of how many had been transfused to Arlo. Side-note: Who knew that blood was separated out into different components? Arlo had many of...
