A Mystery...

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 these different components at different times. At some points he required platelets, other times he needed red blood cells and on one occasion he was given plasma. Unfortunately, all the white blood cells are removed because they contain the DNA of the person who has donated, so we couldn’t even sneak him a couple to get him started. I learned a lot during this time, Arlo and I are both a fairly rare blood type, B+ (I didn’t even know I was a fairly rare blood type until Arlo was born.) So there were times where Arlo couldn’t get the blood he needed he was given O+ blood because it was better than nothing, as certain blood types could donate to other blood types in the absence of the availability of their actual type! It really got my thinking I would have loved to donate blood because I saw how vital it was in the neonatal unit especially. I knew I was unable to. With being Type 1 diabetic, my blood contains insulin which cannot be removed and can be dangerous to the person receiving the blood donation.  But I did know that Arlo could not have continued his fight without the amazing donations of the red stuff that were couriered to him urgently at any time, day or night. If it was something I could have done, I would have done it. No questions asked. After seeing with my own eyes what these superhero preemies go through, all the needles and tubes, lines and vents, drips, blood samples and heel pricks, if all I had to do was have someone take a pint of my blood now and again, that I could easily regenerate, and give it to someone who desperately needed it; I would have done.

Every morning I would ensure I made it across for the ward round. Some mornings I didn’t make it because some of the doctors and consultants started early or decided to do the ward round the wrong way round! It did frustrate me a little when I didn’t get there and get to speak to them, but for the most part the conversations were the same. There were some variations, Arlo needed all sorts of vitamins and minerals and they would change almost on a daily basis. As I mentioned above he required blood products from time to time too. The overall plan was to wean down his oxygen and see if any white blood cells developed, keeping him stable and giving him time and most importantly – avoiding infection. They were keeping a close eye on his infection indicators. Arlo’s were frequently up in the hundreds, when they should be below 5 no one knew why. He consistently tested negative for every infection, virus and possible cause. To be honest I stopped looking at them. I took the doctor’s advice and looked at the baby as a whole. He was happy, comfortable and stable and decreasing his oxygen requirements. Arlo had a problem with his skin too, when he was born he was bright red and his skin became so, so dry. He was also diagnosed with a condition called hydrops, where babies are born with excess fluid under their skin or in certain parts of their body. Arlo’s just seemed to be under his skin, but this swelling caused painful blisters and pressure, especially in his hands and feet, and due to that pressure it caused his poor hands and feet to split and open up. I always wondered if this was the cause of Arlo’s infection indicators, it was always a possibility but they doctors couldn’t be sure and didn’t want to confirm this for the fear of missing an infection lurking beneath.

The doctors were walking a fine line. They wanted to find out the cause of Arlo’s problems but he was stable and they didn’t want to rock the boat. You see, they weren’t getting any answers from the bloodwork Arlo had done, so after conversations with haematologists they decided a bone-marrow sample was the only way forward. They were concerned that this may set Arlo back, so instead hung on to see if he just started producing some white cells.

When I say stable, he was as stable as he could be. His lines were constantly coming out and being replaced, which is a massive challenge for the doctors and a huge ordeal for Arlo. When you go to the blood clinic and they struggle to find veins and draw your blood, and they’re poking and prodding around it is horrible. Imagine being a fraction of the size, with veins like spiders legs, and a needle that is only slightly reduced in size. When Arlo had to have his lines replaced a cloud of seriousness hung heavily above us all and the worry of the staff couldn’t have been more obvious unless they stood there biting their nails. Those cannulas and lines were his lifeline; the only way he could get the nutrients and medication ne needed.

Arlo had a few good days, and a good few days was a fantastic stretch in neonatal. They decided now was the time to bring the haematologist over from Alder Hey to perform a bone-marrow aspirate. They assured me this would be done as quick as possible and that Arlo would be given sedation and they would insert a needle into his shin-bone. The thought of this terrified me, especially with the corkscrew action the consultants sub-consciously made when they spoke about it.  I felt so sick at the thought of this being done to Arlo’s tiny little legs and how much pain it would cause him.

I was asked to go to the parent’s room to wait as it was classed as a surgical procedure. The only place I wanted to be was by Arlo’s side, but I was also scared of what I may do to the doctors when they pulled out a needle and began to stick it into his bones. I made myself a coffee in the little kitchen (I didn’t fancy the scolding lava from the coffee machine) I needed to be doing something, even if it was the physicality of making a cup of coffee and then drinking it. As I carried my drink down the corridor I tried to peer into Nursery 7, but not to look too hard at what they were actually doing. I didn’t need to worry, I couldn’t see a thing. There were roughly 5 green smocks complete with blue facemasks hovering over Arlo, or what I assumed to be Arlo, he was completely covered by a sterile sheet. They were just setting up, and as I stood outside the doors they pulled the divider round so the other parents/ people walking past couldn’t look in, like I was. I walked on by and made my way to the family room, glancing over my shoulder to check the numbers on Arlo’s screen, which were completely fine. Because I had my coffee I forced myself to sit down rather than wear a whole in the floor by pacing up and down. Sitting on the sofa that backed onto the corridor, I had my back to the door; the only entrance and the exit back to Arlo. I settled myself as best I could, phone in one hand, coffee in the other, I Facetimed Day to tell him the procedure was underway. It was a brief as I hadn’t a lot to say, and there were so many questions I was unable to answer. The parent’s room was empty; it was just me, my coffee and my thoughts. Picking up my phone I scrolled through Facebook, but unable to focus I put it down again and drank my coffee, staring out of the window which opened out onto the courtyard. The day was one of those autumn days that never completely got into full-swing, like the sun couldn’t really be bothered and pulled the quilt of clouds back over its head, leaving a silvery-grey. However, hopefully for us it was a day of revelation where the sun would rise, the beginning, the start as we may finally be able to get some answers and therefore treatment.

Finishing my coffee I braced myself to stand up, my thinking was I needed a magazine to read- the magazines were in my locker down the other end of the neonatal unit by the entrance. My true thinking was that if I went down to get a magazine I could put my cup back and have a sneak-peek at Arlo. As I got to my feet and turned to the door, one of Arlo’s doctors was there. I jumped like a naughty child as if I had been caught, my plan had been foiled! The doctor informed me that they were finished and were just clearing up and that Arlo had been completely settled throughout. I was welcome to go back in as soon as they had finished. It was all done and dusted in the amount of time it had taken me to drink a cup of coffee! I walked quickly down the corridor with my empty cup. This time as I walked past, I saw just one floating smock hovering over Arlo and unveiling him from under his sheet.

Walking at pace through the neonatal unit was easy today, it was one of those days where the hustle and bustle was happening inside the nurseries leaving the halls empty. I washed my cup (again-at pace) and put it away, before rushing back to Arlo’s side. As quickly as the floating smocks arrived; they disappeared, leaving Arlo peaceful, untouched. Upon opening those doors, I rushed straight to his side and peered through his fish-bowl. I had my hands by my side as I leaned forward as if to show I was fully aware I hadn’t washed my hands and I would not be touching anything, but it also showed my desperation to be with Arlo.

Terrified of what I might see I started at Arlo’s head and did a brief head-to-toe survey. His eyes were closed, his breathing was settled because of the rhythmical puff of the ventilator, he was lying on his back and I cautiously moved my eyes to his legs, then his lower legs. To my amazement, there on his left leg right in the middle of his shin was a small needle-prick. It was so much less than I had imagined, but still, in proportion to Arlo’s size it was a big ordeal. (I couldn’t help my mind wandering to that ‘corkscrew’ action which had put the fear of God into me.) I was pleased to see it the wound didn’t require dressing and a scab had already begun to form. This meant Arlo’s platelets were okay too- something else I had learned! (In preparation for the procedure Arlo was given red cells and platelets.) The last thing I checked were his numbers on his screen, all were ok, but as I glanced at his oxygen levels I saw his oxygen requirements had increased. While I was contemplating this Arlo’s nurse came up behind me and explained it was because of his sedation that he needed the extra support. As his sedation decreased, so would his oxygen requirements. As I turned round to face Arlo’s nurse, I saw she had one of the hibernation covers (that’s how I like to think of them!) to make his incubator dark so he could get some rest. I don’t know if it was a hint, I’m sure it wasn’t, but I knew she was right, Arlo needed to rest. I quickly washed and disinfected my hands as she placed the cover on. Keeping the cover down, I slowly and quietly opened Arlo’s spaceship door. Immediately his alarm sounded, but he didn’t flinch but showed his awareness, he thought they were coming back for more so he felt the need to protest and for that I couldn’t blame him! If he could have hung a sign on his incubator at that point it simply would have read, “BUGGER OFF!” It made me chuckle but also made me feel sad, it was so difficult, the war that I was fighting within me, I wanted to stay with Arlo after his ordeal, but I knew he needed rest. I gently edged my hand forward and placed it on his head, giving him a ‘hand hug’ on the way out I gently grasped tiny hand in my fingers and I told him how proud I was of him and that I loved him, before edging my hand out, sealing up his spaceship and pulling down his blinds. I left briefly to phone his dad to let him know all was well. When I returned again, after washing and disinfecting, I sat quietly by Arlo’s side and flicked the corner of his curtain up and rested it on top of the door, so I could lay my eyes on him. I didn’t open his doors I simply sat there watching him rest, hoping he would know I was there, and I was back where I should be, by Arlo’s side. His protector. His mother.