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 a miracle. But day after day when I went in we received the news that there was none. Except one, day when Arlo’s bloods showed he had 0.01 of a white blood cell. The doctors and I were all on the edge of our seats waiting for the results the next day. Would this be the sprout of the first hint of Arlo’s white blood cells? Would this be the start? Were the steroids going to water and nurture this inkling of a white cell into a blood-red rose? Would this allow his bone-marrow to blossom? That is what we were all desperately hoping for.
The next day we waited for the news of the white blood cells desperately hoping and praying had multiplied overnight… The result: 0.00. Not a single whisper of a cell. We were back to the drawing board of waiting and hoping, at least this time we didn’t have far to fall. Our expectations and dreams hadn’t had got out of hand. We were just back to the wait and see and keeping him stable.
There was a ‘but’ there dangling in the air. It was the keeping him stable that seemed to be the issue. He was doing fantastically well from a breathing point of view and talk was still ongoing about extubating him and putting him on CPAP we were so excited he had improved enough for us to be having that conversation. This was partly down to the steroids he was being given. The one draw-back was his lines, because of Arlo’s size and the fact his skin needed to be moisturised his lines and cannulas kept coming out, especially his ‘long line’ that was in his groin. Hearing the news that his long line had come out again made our hearts sink and we could see the worry etched on the faces of the staff when his happened. It was so hard to keep these precious lines in Arlo, but it was even harder to get them in and could be very distressing for him too. It seemed to be becoming a regular occurrence that his lines were coming out! And as a parent it was incredibly frustrating. We knew that there was nothing more the doctors and nurses could do, but we just needed to keep those lines in. It was a dreadful time for Arlo and a wearing-a-hole-in-the-corridor-floor-with-worry time for us.
Day and Alfie came to visit as it was half-term, just before Hop-tu-naa, as I’ve previously mentioned. It’s a time of year and a festival that I love and especially love being creative with. We spent some time in the city-centre as a family, but it pained to have to BUY Alfie a costume! Something I had rarely done. It’s so much more fun making them! We opted for a skeleton onesie from John Lewis, where the bones glowed in the dark. It was such a strain and a worry having such a sick baby, and as much as we tried to hide it I’m sure Alfie picked up on our worries. We tried his outfit on and he became upset, I don’t really know why, and neither did he. One possibility why he was so upset, was that this was out of the norm for us. We would normally be at home (scouring pintrest for ideas to copy) ripping up t-shirts, painting faces (arms and legs) wonder-webbing things back together, all while elbow-deep in fake blood. We didn’t buy things from shops, that’s cheating. That’s not us. In the end I let Alfie leave his skeleton onesie on. Paying for it was slightly awkward as the lady had to lean over to the counter to scan the tag attached to Alfie’s back! He left it on while we wondered round Liverpool. When we met back up with Day he opened his mouth to question, I simply shook my head, silently conveying the message, ‘It’s not worth it.’ If the kid wants to be a skeleton for the day and wander round in comfort in his onesie (who wouldn’t?) then let him. There were so many things in our lives at that moment that were uncomfortable and out of our control.
We hopped on the bus back to the hospital, happy we had spent some family time together. Day and Alfie were heading back on the boat that night, so we went back to the hospital to see Arlo before we would head back out for some tea. We walked in to the neonatal unit to see Arlo surrounded by the surgical screens. Of course this made us panic! I walked in to find out what was happening. Arlo’s line had come out. Again. They were trying to get a line back in as this had happened a couple of hours previous while we were out. My immediate feeling was guilt, complete, overwhelming guilt. I should have been there. I was having fun and Arlo needed me. I spent every waking moment with Arlo, the only time I left the hospital was when I had visitors and I was forced out of the hospital by the nurses. It was heartbreakingly typical that Arlo needed me when I wasn’t there. Day took Alfie to the family room while I spoke to the nurses. They told us that Dr Dewhurst had already tried to put a line in, but hadn’t been successful. Now it was Nim’s turn. I wasn’t able to see Arlo as they were working on him, all the staff wearing sterile gowns so as not to infect him. The nurses told me that if I wanted to go wait in the parent’s room Dr Dewhurst would be in a minute. I had no other choice but to walk to the parent’s room and let Day know what was happening. As soon as I broke the news to Day I saw his heart sink reflecting how we both felt. It had all been going so well!
There was nothing really to say, all we could do was sit and wait. All we could hope was that the second attempt at getting the line in had been successful. Poor Alfie was once again left to entertain himself in the parent’s room at the hospital. Normally, one of us would have taken Alfie for a walk to the front entrance or the outside courtyard to stretch his legs or back to the flat where he could chill, but this time we both felt we needed to wait. Unable to be by Arlo’s side, we felt we needed to be as close as possible. It is another one of those helpless moments waiting in the parent’s room, having put your baby even more in the hands of the medical professionals than they already are.
After a lifetime of waiting, which in actual fact was less than half an hour, the face of Dr Dewhurst appeared at the door. It wasn’t the news we were hoping for. They hadn’t got the line in. Something we hadn’t realised was that Arlo was no longer getting pain relief or sedation because the line was out and those drugs couldn’t be mixed with the drugs that were in the other line. Dr Dewhurst had already been making enquiries about getting Arlo to Alder Hey for a surgical line to be put in. Infection could still get into the surgical line, but the risk was less and the chances of it coming out were much, much reduced. We were more than happy to go for this option. A more permanent fixture would be the best course of action for all of us, Arlo especially. It would mean he didn’t have to go through all that pain all the time of the line being replaced, therefore eliminating that unstable factor. It also meant we would be able to hold him more as this line would be a lot more robust, so I was all for it. Dr Dewhurst went to make some enquiries. We actually felt quite hopeful. This could make Arlo more stable in the long-run. We needed this to happen.
The Doctor returned and looked disappointed and exhausted; we could tell he didn’t have good news. Alder Hey had no intensive care beds. They had free theatres to do the operation, but without a bed he would be unable to recover in the intensive care unit. So determined to get this line into Arlo, Dr Dewhurst had made other enquiries. He even suggested a ‘driveby’ where he would be taken by an ambulance, which would wait for him outside the hospital while he had the operation, after which he would be loaded back into the ambulance and brought straight back to Liverpool Women’s to recover.
He returned again. Browbeaten. Alder Hey were ok with this, but the ambulance transfers refused to take him and wait outside to bring him back. Their refusal was put down to them having other transfers.
People react differently to these situations. We could have stood up and screamed and shouted and demanded Arlo be taken to Alder Hey for this procedure, but who would we be shouting at? Dr Dewhurst had tried with every ounce of his strength and authority to make this happen and he was unable to. We could see the compassion, empathy and apology written all over his face; that avenue had closed. We had to find another way around things. He was adamant that Arlo would have this procedure in the next couple of days to prevent being in this situation again.
However, for now, we still had to find some way of getting his much-needed medicines into him. He would be okay till the morning, but he wouldn’t be comfortable without his sedation. This is what worried me the most, the thought of him in pain and discomfort was too much, but with both consultants unable to get a line into him, what were our options? No matter how sick Arlo was, we knew the doctors and nurses had always kept Arlo comfortable. The thought of him being in pain was horrendous. More than ever I wanted to comfort him and tell him everything would be ok.
A temporary solution was that they would look other places to get a cannula in, but they were running out of options. Once place for consideration would be a cannula in his head. This really upset me, but I had to reassure myself that if it meant he was comfortable then needs must.
All the while we had an impatient 5 (soon to be 6) year old who had been promised a special tea with his mummy and daddy. We now knew neither of us had to go to Alder hey for the night, but to be honest, none of us felt like that special tea we had promised Alfie. Everyone knew that precious lifeline had to go in. Dr Dewhurst had one more secret weapon up his sleeve. Dr Bala. Dr Bala hadn’t let us down yet, he had always succeeded in getting a line into Arlo- the trickiest of customers! He always looked so cool, calm and collected when putting Arlo’s line in, silent in his concentration.
Dr Bala was on call for emergencies, Arlo’s situation shouldn’t have been classed as an emergency, but with 2 failed attempts it was becoming one. Even though they knew he would be ok, they didn’t want him to be uncomfortable. They said they would phone him and see what he said.
With all this going on I hadn’t been with Arlo, it felt like a lifetime since I was by his side with all that was going on. So that’s exactly where I went.
On entering the room I was greeted by a sight I had never seen before. Our little fighter, usually so relaxed and calm (even in his defiance) looked utterly traumatised. His eyes looking deep into mine is a sight I will never forget. And thinking of it now truly breaks my heart. His eyes were wide as if in fear and pain. Never had that motherly urge to scoop him up and take far, far away from here been stronger. They motherly urge to protect. For the first time he looked so upset and distressed. Had his little lungs been strong enough he would have been screaming; had his body been stronger he would have been kicking out in self-defence; had I been allowed I would have scooped him into my arms to soothe him, tell him it would all be ok.
You could still see the fight in his eyes, but I did wonder if all this would prove too much for his tiny body.
Since he was usually sedated, it was unusual to see him so alert and awake, and should have been lovely to see our boy without all the drugs keeping him that step detached from us, but it was the complete opposite of the circumstances we wanted.
I sat silently next to him, as tears slid down my cheeks. The feeling of helplessness consumed me. When you have a baby, you are their everything. You feed them, change them, cuddle and comfort them, for Arlo I could do none of that. I could care for him to an extent, by doing his nappy changes and caring for his sore skin, even holding him had only happened on one occasion so far. When he was in my arms he was so peacefully, his oxygen levels peaked at he constantly ‘pinged’ that he was over-saturating, showing that he was happy and settled. I felt, especially in that moment, a multitude of emotions- I was Arlo’s mother, but unable to do anything motherly I was floundering, drowning. I had felt like this to an extent before, but there was always a plan, I always knew the incredible doctors and nurses would do something to help him, but this time I felt they were treading water along with me.
The nurses left me to it, to have those precious moment. To be there for him as much as I could, even if it was just sitting by his side; hand gently placed on his head, conveying to him through touch that I was there for him. I hoped that I could have that connection through a mother’s touch.
Eventually one of the nurses, Emma, came over to me and placed her hands on my shoulders. I felt another wave of emotion as it snapped me back to reality. Alfie was here too, most likely climbing the walls of the parents room, testing his dad’s already thinly spread patience. We had promised him tea, but how was I supposed to tear myself in two. Alfie was only here for a short time to spend time with me, for us to spend time as a family. Alfie needed me too. There were so many times when Arlo was my one and only focus, those long week days with no visitors, when I didn’t leave the hospital, and barely left Arlo’s bedside. Why did this have to happen right now? If I had any energy left I would probably be angry at the unfair situation we had all been thrown even deeper into. I told this to Emma as I broke down.
She left the room with me and we went our separate ways; she went to see Dr Dewhurst and I went to see Day and Alfie. It was difficult seeing the worry and stress on Day’s face, knowing it mirrored my own. We half decided we would stay at the hospital and Day and Alfie would just leave in time to catch their boat. A sandwich tea from the hospital shop. We were about to break this news to Alfie when the doctor came in. He explained that Dr Bala was on his way and would try to get the line in. Just showing how incredibly dedicated these amazing doctors are. We spoke to him about our situation, but he explained while Doctor Bala was working on Arlo we wouldn’t be allowed in anyway and would only be sat in the parents room. He gently suggested that we go or for our meal anyway for Alfie’s sake and that they would look after Arlo. We knew this was true and we had complete faith in them all, but it didn’t make the thought of leaving him like he was any easier.
We silently made the decision we would go, we didn’t want to say it out loud for fear we were abandoning Arlo when it mattered.
Emma greeted us in the corridor outside Arlo’s room. I broke down again. Sometimes people don’t realise the impact of their words, Emma seemed to have a knack for this without realising it.
I told her we felt we were abandoning Arlo when he needed us, she reaffirmed that we couldn’t be in there and that there were two of them as she had her student with her and that one of them would stay with him the whole time we were out. This pacified me slightly, but I still faltered about actually leaving. Emma said, “Alfie will remember that time spent with his mum and dad for years to come, Arlo won’t remember the time you nipped out for an hour.” I silently nodding, with tears welling I walked towards the exit. I couldn’t open my mouth because I knew I’d break. She was right, I’d be back in little more than an hour and with everything crossed he would have a new line in.
Trying to muster some energy and excitement we got the bus to the city centre. My incredible friends had got us a voucher for Liverpool one and we decided to spend it on a meal for us all. It was Alfie’s birthday in a few days, and although I was planning a little surprise for him, which I’ll come to later, we let him choose where we wanted to go. He chose TGI Fridays. We had a lovely meal and tried to relax and enjoy our time together. Colouring colouring sheets, doing word-searches wearing the headbands they were handing out. When conversations drew to a close or there was a moment of quiet, even for the slightest moment, our minds wandered back to Arlo. Constantly checking our phones for an update.
When no update came through, I phoned.
Dr Bala had just finished. He’d got that ever-precious line in, Arlo was now receiving everything he needed once again. Dr Bala to the rescue!
With that news we were able to breathe easier and enjoy the rest of our time together before Day and Alfie raced off for their boat and I sped back to the hospital. I hugged Alfie extra tight before we parted ways, hoping that I would be able to pull of my surprise and see him very soon! It was all so incredibly emotional, I desperately wanted us to all be together. Day and I exhaustedly hugged each other, weary in our departure. What a day it had been.
The bus didn’t seem to move fast enough. I felt I wanted to stand up and walk to the front, pressing my face against the glass in the hope it would move faster. I raced through the corridor to get back to his side. The sight I saw was beautiful, he was so peaceful once again. Everything relaxed, our beautiful boy was settled and not in pain.
The day drew to a close with me able to do Arlo’s cares, and extra cares of cleaning his head. His head hadn’t been cleaned as he always had a hat on. As we swept the wet cotton wool over his head, everything came away. His hat had gone on the second he was born in order to keep his head warm and secure his vent. When we cleaned his head his hair came away too, his gorgeous blonde hair that I didn’t know he had. I didn’t know what colour hair he had and now, with the sweep of some cotton wool, it was gone. I hoped it would grow back over the coming weeks/ months, but his body had an awful lot going on, so growing hair was the last thing on the priority list! For now though, he was bald, completely bald, just like daddy!
I didn’t want to leave his side that night, I wanted to stay forever as it broke my heart that I hadn’t been there for him earlier. Eventually I had to trudge my way back to the flat as I had promised Alfie he could FaceTime me once the boat got in, and typically my phone had run out of battery! Once again with tears streaming, I apologised to Arlo as I kissed my fingers and placed them on his cheek, before I physically dragged myself away.
Sometimes we take everything for granted. No matter how many in your family unit, you expect to be together. Things happen though, things happen that year families apart emotionally and physically. In one sense I was so lucky that we were still together as a family unit supporting each other emotionally, but literally speaking I had never been more torn. If I could have ripped myself down the middle to enable me to be two places at once, I would have done it in a heartbeat.
Arlo was still fighting so hard, but after today he looked exhausted and downbeat, just like we all felt. That night I dropped into a deep sleep like a stone into a pond; pure exhaustion took over. All I could hope was that Arlo would have a couple of settled days of recovery so that we could get him to Alder Hey to get his line in.