A diagnosis

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 the bright lights, they were dimmed because it was night-time and the babies had to get used to day and night even in the neonatal unit. The fact the lights were on signalled there was something happening. But there was nothing immediately obvious going on. I walked to Arlo’s bedside which seemed to be busy, but with nothing in particular; nothing to worry about. Arlo was having some medication given and some infusions changed, but as with everything in neonatal, it required two members of staff to make absolutely sure the medication was correct and the minuscule dosage was perfect for his weight. There was a calm but electric atmosphere around Arlo, yet I couldn’t quite work out why or where it was emanating from. The consultant was consulting with the nurses around Arlo’s bed. The consultant was The Professor or ‘Prof’ as he was known around the unit.

He looked up and saw me, and made towards me immediately. Then I realised the excited energy was coming from him.

“We have some results back from the bone marrow aspirate…” The initial thought that flew, unwelcome, into my mind, was that they had found nothing. Arlo was a mystery after all and wanted to continue to be… I had already written off what was coming next, ready to question the doctor what was the next level of investigation.


But what he said next stopped me in my tracks…  


“…We have a diagnosis.”


It was one of those moments where time stood still. I was desperate to know, yet terrified of what I was going to hear at the same time.

If something was so incredibly rare, that had had everyone scratching their heads for so long. If it was that rare, would there be a cure?


“Hemophagocytic Lymphohistiocytosis…”

I glared at him. I thought I was getting used to the medical jargon that was thrown at me. But it became clear to me that this was no longer the case.

“…Or HLH for short.”

Well that was slightly more manageable for me to tell people.

He then went on to explain what HLH was.

The reason for the HLH diagnosis was because they had seen his red blood cells being eaten by other cells, the body’s defence mechanism. This defence mechanism had gone into overdrive and along with cleaning up Arlo’s body and fighting the germs that may have snuck in; they were eating Arlo’s blood cells too, therefore were stopping him from producing any white blood cells and munching any red blood cells that were produced. This was the reason for so many blood transfusions.

This link may explain it better than me…

Of course he wasn’t going to give it all away, in true Arlo style, it was INCREDIBLY rare and not one of the medical professionals at the hospital had ever heard of it before. It was a lot to take in, but it the endless downpour of information wasn’t over yet. They had already done their research and found out the recommended first line of treatment. It was a steroid called Dexamethasone, but there were risks.

One of the risks could be that Arlo could be more susceptible to infection, plus other side effects which could be risky. But the only other option was leaving Arlo without any treatment to see if he would, himself, start to produce some white blood cells. By the point of diagnosis Arlo was over 4 weeks old and had never had a white blood cell to his name. I knew in my heart we had to try it, but I knew I had to phone Day so we could make the decision together. Although it was said it may leave Arlo more susceptible to infection, the doctor agreed that he couldn’t really be much more prone to infection without any white blood cells. He also informed me it may actually help Arlo’s lung development, so that may actually be a bonus.

A quick phone call to Day followed, where I summarised what the doctor had said. The decision was swift; we had to give it a go. Nothing that had been tried so far had worked.

Returning to Arlo’s room I gave the doctor our consent. We had to try. We had to give him everything we could to help him to develop some white blood cells and give him the ability to fight infections and stop his body from attacking itself. The first dose would be administered to him in the morning; there was no time to waste.

After the decision was made and the wheels were in motion, I realised the nurses had moved on to doing Arlo’s cares while I was talking to the Doctor. It always upset me and, if I’m honest, angry when someone else did Arlo’s cares. It should be me changing his nappy and doing everything he needs, not them. This was amplified because I felt so helpless, most of them time I just sat and watched the doctors and nurses as they cared for Arlo, giving him everything he needed through his wires when it still should be me. He should still be nestled inside my stomach; cosy, warm and safe, and because he wasn’t, I wanted to do as much as possible for him and it hurt to watch others do it.


Although, letting someone else do his cares this time it was for a reason, a very important reason we were moving forward, but it didn’t hurt any less. The nurses must have picked up on my feelings as they stepped aside and I smothered the cream all over Arlo’s body to sooth and moisturise his skin. He seemed so settled with no idea of anything that was going on around him at that moment, of all the decisions that were being made all around him. As settled as he could be with wires connected to almost all his tiny limbs, the puff of the ventilator and the beeping of all the machines that surrounded him. When I looked at it like that I felt the tears burn my eyes. I still had to fight the urge to snatch Arlo up and take him away from all this craziness. I just wanted the world to stop turning and spend some time with my boy without all the beeping machines, medicines and decisions to be made. To take him to a place where we could all be a family as we should be, where we would be part of a different type of craziness; the craziness of our family home. None of this should be happening; we should be like every other family. We had been on this road for 4 weeks, but the road had been more of a treadmill, it kept turning over, occasionally there was a slightly different pattern underfoot, but on the whole it was a treadmill. The same thing day in, day out over and over again. Now things were shifting, with a diagnosis I dared to hope that we may start moving forward with a plan and treatment in place. I looked down at this tiny fighter, who was already fighting so hard to stay with us and desperately pleaded that this medication would help Arlo to develop some white blood cells.

As I left Arlo for the night, I whispered for him to keep fighting and walked back to the flat I felt almost excited! I was excited about pushing forward and solving this so we could bring our baby home.

By the time I returned to the flat which was only a short 5 minute walk, however, I was starting to feel scared and alone. Everything Arlo had was so incredibly rare I didn’t know where to turn. Once again we had no one to turn to for advice or support. It wasn’t the physicality of being alone, because even though I was, I had people I could call or message whenever I needed. It was that we were alone on this journey, it wasn’t that we wanted people to tell us they had been there before and that everything was fine. I wanted to know the good, the bad and the ugly. I just wanted someone with experience to speak to.

Sitting down for a late tea, I received a message from Ciara at Little Heartbeats. She was like a guardian angel and had been messaging me all along; since that fateful scan, home bed rest, hospital stay, Arlo’s birth and along the neonatal journey, every step on the treadmill.  I shared with Ciara the diagnosis Arlo had been given, she (along with every single other person I told) had never heard of it, but she told me to leave it with her. I didn’t hold out any hope.


After expressing I retired to bed. I felt enough was enough for today. I had briefly googled HLH earlier on, but being given the news so late in the evening, the words swam on the page in front of me, no information able to penetrate my already oversaturated brain. I expected to fall into a fitful sleep; instead I was out like a light into a dark, heavy sleep, having to drag open my eyelids to express in the depth of the night.


The next morning, back by Arlo’s side, I felt stronger and ready to fight, just like he was every single minute of his life. Sitting there gently holding his hand, I received a message from Ciara. Not only had she found a support group for people with HLH, but she had found a newspaper article dated just a couple of days before hand about a little baby from Ireland who was being treated in Great Ormond Street Hospital in London. She sent me the link to this article, along with the Facebook group that was set up in his name. His name was Shaye, he had HLH and he was born at 31 weeks gestation. Immediately, after reading the article I sent a message to the Facebook group, receiving and almost instantaneous reply saying the message would be passed on to Shaye’s mum.

Here is that very article!



I sent all of this through to Day, we both felt so excited.  

All of this was down to Ciara at Little Heartbeats; this was something I was not in the frame of mind to be doing at that time. She is someone who does so much for so many, yet is so often overlooked. I am truly grateful for her putting me touch with Shaye’s mum.


Later that day I received a message: “Hi Sarah I hope you see this message. It’s Shaye’s mum…”

Through a true friend who wanted to do anything she could to support me, a mum who had been through PPROM and that she had only met once, together through the power of social media I had found someone who would in some way, shape or form know how I was feeling.

And there we were, the connection was made and two mothers, two families, on the same journey were connected; no longer alone.

What a 24 hours!



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.

I’m struggling

I’m struggling 


Ouch. Those words are painful to say. Just 2 words, 3 syllables all in, but they’re incredibly daunting. They open up so many questions, they may you feel incredibly vulnerable. You’re putting yourself out there to be judged. By opening up you feel you’re going to be alone because people don’t understand. 


“She looked fine the other day.”

“He was laughing when I saw him earlier.”

“Think someone just wants a bit of time off to skive, I’d love a lie-in.” 


Do you know what? They probably do look ok. On the surface they have a smile, chat like normal even laughing and joking. Sometimes that works. That facade works. You are able to kid yourself that you’re doing ok and the best way through this is to pick up your bag, lean into the wind and brace yourself. Power on through. Paint that smile on your face and pretend everything is normal; the proverbial swan, beautiful and calm on the surface, but paddling like crazy underneath just to stay afloat, but barely a ripple on the surface to show for it. 


Do you admit you’re struggling and break that facade or do you paddle on through? 

Do you say those words? Or do you keep pretending and hope how you’re feeling will pass?


“She looked ok last time I saw her, clearly spent ages on that make-up, can’t be that bad.” 

“But he has just treated himself to a new phone, can’t be that bad.”


People who are struggling from anxiety or are on that slippery slope to becoming depressed aren’t likely to be the ones dragging themselves into work like a Neanderthal. (Well they might be, but that’s not what they’re going to show you.) They may turn up wearing more make-up spending longer than usual on their appearance to make sure their mask in firmly in place. Others may buy themselves a new something or dress a little smarter to deflect from how they are feeling, which doubles as something else to talk about rather than what is really going on inside their minds.


People may not want to talk about their feelings and what has triggered them, but it is so important that they know they have the option and freedom to. Asking them how they are feeling may not deliver instant response. They may not suddenly break down and cry in front of you weeping and wailing and spraying their whole life story all over you, but they will be making a mental note, they will know that when they do need someone, you may be that person they can turn to.


Those words don’t come easy and they’re not said with the plastered smile on your face no-matter how hard you try. They are spoken with a barrage of emotions that hit you all at once. Emotions break through the flood defences that have been firmly set in place, they are no longer able to hold back the flood. I have compared this to the Friend’s episode where Chandler is unable to feel or show emotion, but it transpires that once he does show emotion and let it all out, he is unable to stop. You may walk into that doctor’s office or see your manager or a friend or family member, promising yourself you’re not going to cry or show any emotion. Before the cheeks of your bottom have touched they cold plastic of the chair it’s likely you will be crying. By walking through that door you have already decided it’s time for a change of tactic. The powering through approach hasn’t worked, and this time has resulted in complete exhaustion. Sometimes this is when you are at your most productive because you need that distraction, sometimes the feelings don’t pass and it’s time to explore a different route.  




Admitting you’re not coping and letting others in is a moment that’s been a long time coming and a decision that wasn’t taken lightly.


People may feel anxious and feel everything is too much for many reasons. They may be grieving and when I say this I don’t mean in the days and weeks after, I mean in the months and years, for the rest of their lives. Sometimes it can sneak up on you and pounce out of nowhere grounding you in an instant. Other times it lingers and stalks, quickly retreating when it is challenged, but always hovering at the back of your mind, waiting for that moment of weakness. It can be lying dormant, resting; biding its time for that trigger to set it free again. Sometimes things happen in life that people never ‘get over’ and it is really upsetting that people think that years down the line time has healed all and you should have moved on.  It simply isn’t the case.


Sometimes a big life-changing event may not be the cause of the anxiety. Sometimes it is lots of little things that build up. All these scrunched up little pieces that you stuff so far down, making a mental note to deal with later or taking on-board things your simply do not know how to deal with and cannot process. You keep adding more and compressing them down adding and compressing. Not dealing with these little things can leave them hanging over your head like a tidal wave, covering the sun and casting shadows, shrouding you in darkness and where the threat of drowning becomes very real. Eventually, there is very little space left. If anything more should happen or ‘crop up’ as it inevitably does, there is physically no room left to take it on-board, but you try anyway.

“Ha! What has he got to worry about?”

“I only asked her to make sure the reports were on my desk for the end of the week! No need for that!”

That one little stress can be enough to make you explode, snapping and sniping when you are handed something else to deal with you blow. This could be the tiniest inconvenience but you simply don’t have the reserves to deal with that forgotten lunch-box or the broken computer, so you snap. And to the outside world it is over nothing, but they have no idea of all those tiny issues that have all added up.

 Or it can make you curl up into a ball for self-preservation hoping a shield of armour will envelop around you and protect you from anything further. This also means you are unable to take anything else on-board, leaving it all to stack up, causing further worry when you sideways glance at that ever increasing tower. It’s not more than a glance because that pang of worry that you feel in your chest stops you from perusing it any further. Instead you retreat back inside yourself, and jump back on the treadmill of worry – running over those thoughts and worries but never picking them up to process them. You are just doing the bare-minimum to get you through each day.

People cope with their anxiety in many different ways. One way, and it isn’t for everyone, is to see a counsellor. Whenever you mention to people you are seeing or have seen a counsellor they assume you’re crazy. They assume you’re one step away from running naked down the street with your knickers on your head asking people if they have seen your pet banana. (I quote the amazing Kath Crowe here, I remember reading in one of her blogs that she was never afraid of growing old and going slightly doo-lally and in fact would have been honoured to be that crazy lady running down the street with her knickers on her head had cancer given her the opportunity.) But that isn’t the case just because you are seeing someone to talk to. People are judged for seeing someone for any issues they may have. There is SUCH a taboo about seeing that professional whose job is to help you. No-one every shouts from the rooftops they are seeing a counsellor, they rarely even drop it into conversation and only for the fact they are unsure how the other person will react or that they will think less of them for needing that extra support.


As with finding the right partner you may need to kiss a few frogs. Not everyone is the same, as in life they get on with some people better than others, so you find the right professional for you. If you don’t get on with the first one you meet, don’t be put off. Try someone else. It’s ok.


I have seen and am currently seeing a counsellor. I am not ashamed. She is amazing. She can’t fix me, she isn’t going to pat me on the head and tell me everything is ok. She lets me pour out everything I am feeling. She helps me to unknot that ball of wool that sits inside my brain. She straightens it out with her strategies and breaks what can seem a completely overwhelming mountain down into bitesize chunks. Step by step. I have seen others along the way, but they just didn’t suit me and that’s ok.

I don’t see her often. In actual fact it is almost 9 months since I have seen her. I saw her on the run-up to getting Arlo’s post-mortem results, because at that time I was struggling with the wait and anticipation of the appointment. I was waiting for a teddy to be made to store his ashes in, that wasn’t yet ready so we couldn’t bring him home. I was unable to get closure on something that had happened and I had put a complaint about some flooring that I was waiting to hear back about. Sounds stupid, but on-top of everything else it felt bigger than it was especially when I was waiting for any one of those things to land and be put to bed.


I have seen her recently because I am struggling again, I felt I was in self-preservation mode, letting things stack up because I was trudging through the day-to-day. I was snapping and stressing should the slightest thing go wrong or should an extra, unexpected one require attention. There were so many things going on I just needed a safe place to vent. I needed to speak to someone who doesn’t try to tell me what I should do to make things better, someone that doesn’t give me sympathy because I don’t cope well with that. I hate people feeling sorry for me. Be it friends or family, I instantly clam up, I have an overwhelming need to prove to them that I’m ok immediately after the slightest drop of sympathy. That is just me. It doesn’t mean I don’t love my family and friends, but I almost want to protect them too. If a tragic event has happened in your life, the ripples will have reached your family and friends too. I find it easier to offload to someone that isn’t directly involved. They do that job for a reason. They didn’t walk in off the street, they have trained and have the personality to be able to do the job. They are in that job because they want to make a difference and help people.


There are many questions I will never have any answers for, things I will never be able to put to bed and close the door on. From time to time they sprout up from nowhere; I go over and over them trying to find an answer in my own head. During these periods everything becomes knotted and I start to flounder. She sits back and carefully unravels the knotted wool, picking her way through to help me straighten things out and make sense of them in my own head. SO I am able to see a clear route forward.


Please be kind to others, you can never sure what battles they are fighting. No one is asking you to try to understand them deeply, but understand that the choice they have made is best for them at that time.

Remember… It’s ok not to be ok!



On Days Like This


On days like this I want to be anonymous,

And be where no one knows my name.

On days like this I want to be no one,

No recognition, just tunnel-vision,

And definitely no fame.


On days like this I don’t want to be me;

Smiling and always polite.

I want to scowl and frown and shout,

Feeling darkness, no glimmer of the smallest light.


On days like this I’m happiest alone,

That way there’s no pretending.

Allow me the days where black clouds hover;

Relentless, never-ending.


Let me have my days like this,

I pretend to be happy ever so often.

Let me be just this one day,

Let the shell-like exterior soften.


Let me cry and sob and shout,

Let me be that angry person.

Let me not be myself today,

But don’t let the dark sky worsen.


After today help me back on my feet,

And help me walk again.

I’ve never liked needing support,

But I need your help through this pain.


Let me have my days like this,

Though few and far between.

I need them to recharge and become,

The person you’re used to seeing.   


By Sarah Ward


It became very easy to be wrapped up in the hospital life on the neonatal unit. The days flew by in a flurry; I didn’t once ever think I was bored, in fact I felt I barely had time for anything.

In my blogs I have talked a lot about Arlo and everything that goes along with a prolonged neonatal stay, but one thing I haven’t talked about much is home. Life back home was going on without me and that was hard, very hard. The summer-green leaves had turned a golden-brown with shades of red, orange and yellow. In the flicker of an eye they began to carpet the ground below. It was the time of year for autumn dog walks, blackberry picking, rustic slow-cooker meals and blackberry and apple pies smothered in custard. It was the time of year for homemade Hop-tu-Naa (Halloween) costumes and traditions. It’s time for carving a turnip for tradition and a pumpkin for creativity. (Much to the disgust of some family members who don’t allow a pumpkin in their house. It’s a turnip or nothing.) It was the time of year to knock on doors and sing the Hop-tu-Naa song and cross your fingers they gave you some sweets.


My mother’s gone away

And she won’t be back until the morning

Jinnie the Witch flew over the house

To fetch the stick to lather the mouse


My mother’s gone away

And she won’t be back until the morning

Hop-tu-Naa, Hop-tu- Naa

I may be a complete hypocrite by carving a pumpkin along with the traditional moot, but I do not do ‘trick or treat’ it’s the Hop-tu-Naa song or no sweets. All the while I continued on the neonatal treadmill as if it was ground-hog day. I know every day is different and Arlo did amazing things each day, defying the odds. But it was still waking up in the same flat, in a densely populated area, no fields, forests, or rural landscapes. I was used to seeing the sea, and countryside. This was all strange to begin with, but it quickly became the norm, because I was there for a very important reason.

I didn’t much think of the changing seasons until I noticed the leaves of the sporadically placed trees placed in an attempt to clean the heavy, grey air of a city, floating around in the chill-to-the bone autumn winds.

Autumn is my favourite time of year and I felt it was passing me by. I still spoke to Alfie in the morning before going to sit with Arlo and at night when I returned to the flat to get my tea, express milk for Arlo, set my alarm to do this again at 3 am and go to bed. I would sometimes read Alfie his bedtime story still, but he didn’t always want me to, in comparison to being at home when he would beg for me to read him a story every night. Daddy just wasn’t the same, although he was better during this period because he was there, sat snuggled next to him and not reading to him through a cold, reflective iPhone screen! A cold reflective iPhone screen that frustratingly kept freezing due to the patchy internet coverage; it just wasn’t the same and it broke my heart that I wasn’t there in real life to put him to bed every night. I was so lucky that Day was doing such an incredible job of looking after Alfie that I didn’t have to worry. Okay, so it may not have been done my way, he may not have read every single night before bed, homework may not have been done as creatively as usual, but he was fed, clean, loved and happy. When dealing with things that are completely out of your control you learn to loosen the reigns a little and realise that things still tick over and there is no need to be a control freak all the time. And when Day wasn’t able to be there for Alfie, either because he was at work or with Arlo and I, we are incredibly fortunate to have not one, but two sets of grandparents that step in to look after him (Alfie, not Day!). You see I think I had subliminally prepared them for my going away by embarking on a school trip to France for 4 nights earlier that year. Day had documented ‘Daddy and Alfie’s week alone’ on social media, including one post of Alfie, still in his school uniform, washing the dishes in the bath! Multitasking at its finest! I received this post while in France on the sketchy Wi-Fi as we grabbed a few precious moments once all 30 children were settled in bed. It did make me laugh out loud! I did think back to that time when I knew ‘Daddy and Alfie’s undefined amount of time alone’ was happening, but this time under different circumstances, but I knew they were okay and probably having more fun running riot!

It brought it all home just how much I was missing out on when my mum and dad sent me pictures of them with Alfie at the school’s Harvest activity day. Don’t get me wrong, I’m so glad Alfie had someone turn up for him and that he wasn’t sat alone without anyone visiting him this special event, even the thought of any child, especially Alfie, sat alone while all other children have a visitor truly pulls at my heart-strings, but I was upset and slightly jealous. It should have been me. In life there is so much you take for granted, that you will be there next week to see your child in their concert, that you will have smooth pregnancy, give birth full-term and take home a healthy baby. Maybe by experiencing an unexpected illness or injury and you miss something important because of it you may have some idea. You may promise your child or family or friends you will be there next time, but with a prolonged illness or unexpected turn of events you cannot make those promises. You see this wasn’t our plan, we had taken for granted when we announced Arlo’s expected eviction date of the 21st of December 2016, that we would be taking a full-term healthy baby home. I expected to be waddling Alfie to school, football, parties, school events chatting excitedly as I counted down the weeks, not sat in an unfamiliar neonatal unit a plane/boat journey away from my partner and our eldest son, while caring for our premature, extremely poorly son, youngest son. There is so much you take for granted, you never think anything like that will happen to you, because that’s the type of thing that happens to other people. I’m sure a friend of mine thought that recently when she was diagnosed with cancer aged 29. You never know what is round the corner. She had so many plans for her future that are now uncertain, and many that will defer from the original plan. It’s a difficult one because if we didn’t plan for the future, we would just curl up and stop. We need those future plans to be made, we need to dream and look to the future, but savour those moments while you have them. I don’t want to tell her she is being brave, because I feel words are insignificant and meaningless and although our situations were very different there are many similarities and one of them was the uncertainty of the future.

Alfie would constantly ask when I would be home and the only answer I could give was, ‘When Arlo is better,” because I had absolutely no timescale to be able to offer him any reassurance.

When Day and Alfie came over to visit we made sure that we all spent some time with Arlo as a family,  but then we would make sure we went into Liverpool City Centre to do something for Alfie to do like go to the cinema or crazy golf. After all the neonatal unit of a hospital is no place for a 5 year old, for them it is incredibly boring, Alfie would be so excited to see Arlo, but after 10 minutes of sitting still and watching the baby lie in the goldfish bowl beeping at him he was done. In some ways it was comforting that he was no-longer awestruck and terrified by the sheer amount of machines surrounding his little brother.

And I can’t blame him, just like me, this child was an outdoor creature. Not used to the confines of a built-up urban area, never mind the confines of a small clinically disinfected room inside of a hospital. He needed to get out, stretch his legs and run riot as all 5 year olds should. I realised how lucky we were on the Isle of Man to have so much opportunity to explore the outdoors, something we had previously taken for granted. Just as Alfie missed the outdoors, I missed home. And for now this was life and we had to make the best of a bad situation. We weren’t brave or courageous, we were torn; we were like a glass vase always teetering on the edge, with the constant threat something may break us.

Anything you can do…

Pink Pant Friday…

I couldn’t think of a better subtitle. There are only a select few people who will know what this means, but I feel pink pant Friday should be shared!

As I have mentioned before, after a couple of weeks in neonatal Arlo got a little friend who was there to stay. Others had come and gone after their brief stay in neonatal had moved to the high dependency unit and hopefully to low dependency and home. I didn’t feel I had much in common with these parents; the only communication was a cursory smile. They were holding their babies on a daily basis, waiting and willing them to get stronger. I feel like a hypocrite assuming that all was well and had always been well with them, but as an outsider observing this when your child lay next to them helplessly sick; it seemed that way. Even if they hadn’t had a smooth ride, I was observing the here and now and they were heading towards home. All I saw was them holding their baby and making plans, plans we couldn’t even dream of. Arlo was still far too sick and we still didn’t have a diagnosis, never-mind a cure (if indeed there was one). And as ashamed as I am to admit it, I was jealous.  We didn’t know what was wrong with him; we didn’t know why his white blood cells weren’t present; we didn’t know why his bone marrow declined to function; we didn’t know if we would ever hold our baby like they were holding theirs; we didn’t know if we would ever be making those plans. So needless to say, I wasn’t in the mood for small-talk while I was in next to Arlo. A tight smile it was. That was for outside and for the expressing room. Of course, I was happy for these families, but it didn’t mean it stung any less.

Arlo’s new little friend was called Lily. The few days before Lily arrived there were whispers and lots of conversations about a baby possibly being transferred from another hospital. I gathered from the conversation happening in nursery 7 that would be where the new baby would be staying.

As I opened the door one day I saw we had a new arrival in the opposite corner of the room to Arlo. I saw a lady, who I assumed to be Lily’s mum, sitting next to her incubator. She had her back to me, unable to keep her eyes off the precious bundle. Throughout doing my usual morning ritual, her eyes didn’t meet mine. And I understood.  I understood this completely. She was focused on the amazing little fighter in front of her as I was with Arlo.

Days rolled on and we became aware of each other camping out next to the two goldfish bowls containing the most precious cargo; sitting on a diagonal to each other in nursery 7, the smallest of the intensive care rooms. Lily’s mum, seems to have an air of sadness around her as she stared into the incubator. It was more than the worry and the stress of having a very sick baby. She was by her daughter’s side constantly, so when she disappeared for a couple of days I was worried. However, I didn’t feel it was my business to ask or if anyone would even be able to tell me, but I was worried. Observing the nurses in the absence of Lily’s mum was lovely, they treated her as they would have treated their own baby and I found it reassuring to see that’s how Arlo was treated when I wasn’t there. They talked to her, laughed, joked and smiled, even jokingly telling her off when she decided to cause chaos. Just like a mother would, just like we would. I did wonder where she was and I thought of how difficult she must have found it to be away from Lily.

Now, Lily had a few days to settle in and Arlo had the chance to realise that he had a friend who also had lots of alarms and noisy things to play with… All of which made different sounds some chimed, some beeped; the ventilator had its own special fanfare. As Lily’s mum returned Arlo and Lily began to communicate. I’ve mentioned before how Arlo would drop his saturations and protest by sounding the alarms to make his feelings known. It became apparent these two tiny babies from inside their fish bowls were capable of having a conversation across the room. Conversations and competitions.

Arlo would set off his saturations alarm, which would was a monotone chime, DONG DONG DONG DONG, Lily would reply with hers, DONG DONG DONG DONG.

Lily’s vent alarm would sound, this was a kind of fan-fare (I can still hear it now) DOO-DOO-DOO-N-DOO-DOO, Arlo chipped in with his, DOO-DOO-DOO-N-DOO-DOO.

Lily’s mum, who I learnt was called Lorraine, and I, along with the nurses in the room would laugh when the pair of them started their conversations. The noises in the room, the constant chimes and fan-fares broke the ice between Lorraine and I. With it not being the type of environment where you bustle in with a smile on your face, chirpy and smiling and introduce yourself to the room, nor sit around sipping a vodka faking some confidence to make new friends, not even like an awkward course where you sit around being forced to socialise with strangers who’s name you only know because of the generic white sticky label and name scrawled in felt tip. We didn’t have alcohol to make us brave or one of those awkward ice-breakers on team building courses. It’s not like any situation either of us had ever been in before and we didn’t really know what to do. But over the next few weeks we began to build a friendship, and it was all because of these two tiny human beings, the reasons we were there.

On a daily basis, these little conversations continued and they built. They turned into competitions. You see, when these alarms sounded they baby who sounded them got a lot of attention for a short while. The alarm would sound and there would be a burst of activity around one of them. Quickly they became wise to this, a dinging alarm meant attention, a sure-fire way to see how fast all the nurses could move.

It really was a case of, ‘anything you can do, I can do better…’

Arlo stopped weeing again for a couple of days, enough to give us a scare once again. This time he has a little blockage, the poor little man, but once that was cleared he flooded his incubator!

Lily stopped weeing, but she had to go bigger and better than Arlo. She stopped for longer and took longer to flow back, therefor making Lorraine terrified before starting up again at a snail’s pace.

Once, Arlo crashed and had to be ‘bagged’ where the nurses/doctors manually take over the breathing to get their oxygen levels back up. Arlo tried this out first, and upon seeing how much attention he received, Lily gave it a go. Making her oxygen levels plummet through the floor, she had all the nurses swarming round her bedside like bees to flowers, a Lily flower, just like they had round Arlo-flower previously!

Premature babies struggle to balance the vitamins and minerals in their little bodies. Arlo and Lily seemed to tag-team with these supplements. Lily had calcium; she no longer needed it so passed it to Arlo. Arlo required extra magnesium; he had his fill so passed it back to Lily. These two shared everything; thick as thieves.

Now… pink pant Friday. That was a different story altogether. It all started on a quiet Friday morning. Now, that word, ‘quiet,’ is never to be uttered in a hospital environment, because as soon as it is spoken, all hell is known to break lose! It’s a bit like saying “good luck,” to a cast member of a theatre show. I’m absolutely sure that morning that someone must have said, “Oh, it is quiet in here today…” which would have been met by the moans and groans of the other staff members. Then Dr Dewhurst entered the neonatal unit in a pair of pink pants, and that’s where it all went wrong!

As he entered the room that morning there were sniggers and laughter from the parents and nursing staff at the choice of pants. The doctor responded to this by explaining he was trialling this colour of pant today and it was nicknamed ‘Pink Pant Friday’ and it was commented that this was its trial run and if it was a success he would wear them more often. During the consultation that morning as I tried to concentrate on the conversation, I mentioned that Arlo’s ventilator was making a squeaking noise as he was breathing. It had made me jump to begin with, like Arlo was making a sound; his first sound, but I quickly realised it was his vent. The doctor told me that this can happen from time to time and that his oxygen levels were doing just fine so just to monitor it and if he needed a new tube he would get one. He checked on Arlo’s records and informed me that it was coming to the time where Arlo was due for a vent change so would have one soon, but it wasn’t an emergency as of yet. As for the rest of Arlo’ s problems they were greeted with the usual question mark they always were. Arlo was still the mystery man!

After Lorraine and I began to chat and I soon found out that she has returned to her hometown for her father’s funeral and the funeral of her son. Lily’s brother, George. I thought of my journey and how hard I was finding things and realised how incredible this lady was. She had experienced premature labour at home suddenly in the middle of the night and had given birth to Lily. While she anxiously awaited the ambulance, she was comforted by her little helper, her 5 year old son, Charlie. Lily was breathing on her own during this time, which was a miracle in itself. Even when they ambulance arrived, they didn’t have the equipment to intubate her, so she was just given an oxygen mask until they could reach the hospital. As lily fought on in the neonatal unit; Lorraine remained pregnant with George for 2 more days before giving birth to him too. He put up such a fight, for almost two weeks before peacefully passing away in her arms. George grew his wings the day Arlo was born. Lorraine told me that when she saw Arlo’s birth date, she found comfort in the thought that George was too sick to be here, so he had made way for Arlo. The sentiment brought tears to my eyes. Her boy knew he wasn’t going to survive, so he put his efforts into making sure Arlo gave it all he had.

Lorraine had been through so much and yet the uncertainty continued with having Lily so sick. I bet sometimes she wanted to run and bury her head in the sand and no one could have blamed her for needing some time away. The fear of your baby being so poorly, the thought they may not survive constantly hangs over your head, I can only imagine how much more real that fear is when you’ve experienced it just weeks before. But Lorraine didn’t run and I doubt the thought ever crossed her mind, aside from two days to attend two heart-breaking funerals, which must have torn her apart, she was there with her daughter, every step of the way and for that I truly admired her.

As well as having both our little fighters in neonatal, we both had 5 year olds at home that we were missing terribly. Charlie visited Lily when he could, just as Alfie visited Arlo. It was a fine line to balance keeping their normal routine at home and bonding time with their sibling, as well as seeing us. And it was so difficult being away from our boys, from being mothers to them. From being hands-on mothers, making the packed lunches, baths and bedtime cuddles. We knew how one another felt as we felt exactly the same way ourselves.

During that Friday, the neonatal unit seemed crazy. There was hustle and bustle everywhere. Just about every baby in the neonatal unit was having ‘one of those days.’ And room 7 was no different. I went to express a few doors down and upon my return Loraine told me that Lily had to have an emergency vent change. She must have overheard that Arlo was due one and decided he wanted to get in first! All was well now and calm was restored to nursery 7.


Everything seemed to happen when I was out of the room. This time I had nipped down to the café at the front to get some lunch. I couldn’t have been gone more than 30 minutes. Once again, upon my return the great number of nursing staff seemed to be stepping down from around Arlo’s bed and ebbing away from the room. His machines ticked over perfectly, numbers reading within range, Arlo snoozing peacefully, a quiet vent without a squeak I noted. While washing my hands I didn’t take my eyes from Arlo. The nursing staff came over to me and explained that Arlo had also had an emergency vent change, I immediately looked over at Lorraine. I had previously assessed him as I entered the room, so I knew all was well, so upon this information Lorraine and I looked at each other and laughed! The pair of them couldn’t let one have something without it happening to the other too. The coincidences were unbelievable!

Alarms seemed to be going off left, right and centre on Pink Pant Friday. I even heard the crash alarm go off, I saw nurses fly from our room, leaving skeleton staff in there to join the stampede of doctors and nurses thunder past our room to the baby in need.

Towards teatime, heading towards staff changeover, a dishevelled Dr Dewhurst (who we had not clapped eyes on since earlier that morning) and his pink pants entered the room to check up on Arlo and Lily. He entered the room with the announcement that the trial of Pink Pant Friday had been a disaster. Cue laughter from the parents and staff once again.

Even as a medical professional, you still have to employ a sense of humour. Dr Dewhurst and his team had been saving babies all day long. They were mentally and physically exhausted, but underneath their medical training they are people like you and I. And at the end of an exhausting day where everything has gone wrong and you feel like you’ve been running on a treadmill not making an inch of progress, you let yourself sink and pick apart every decision you have made, questioning your judgement and how you could have made things better (this will happen anyway). Or you can crack a joke and raise a smile and vow never to repeat Pink Pant Friday.

The Talk

The Talk
You get to know your own baby, even when you’re unable to pick them up and cuddle them close when even you want; even with all those wires, tubes and monitors, encapsulated in their own little bubble, they’re still your baby. You get to know if they’re happy or sad or grumpy or cheeky, they find their own ways to communicate and let their feelings known. Arlo would set his alarms off, stick out his bottom lip and scrunch up his face when he was feeling unhappy. This was known as his ‘Alfie lip’ because he was a carbon copy of his big brother when pulling that face. Every time I stared at this little miracle in front of me in his little fish tank, I couldn’t help think how amazing he was. He should still be in my tummy, safe and sound. Instead, of reading on an app or watching videos on the internet of what my baby was doing as each week passed, I was watching it in live time with my own eyes. It was bitter-sweet to say the least.
Arlo got a little roommate called Lily. Lily was a couple of weeks older than Arlo and had been transferred from another hospital. It quickly became apparent that Arlo and Lily both had large personalities for tiny, premature babies! There will be more to come about Arlo and Lily’s antics later…
One morning, Arlo didn’t seem himself, he just didn’t look right. He had come so far in two weeks and had made real progress. His skin had improved since he no longer needed his sunbed (the jaundice U.V. light) and he could have moisturiser on it. He was still ventilated but everything was heading in the right direction. It was a Sunday, Day had already called in on the Saturday morning and Arlo had met a couple of our close friends. On the Sunday morning Arlo didn’t seem too happy, he was still maintaining his oxygen levels but was requiring a little more support. For the first time the doctors didn’t seem overly happy with him. It seemed he wasn’t weeing as much as normal either. I didn’t really know what all of this meant, but I knew it wasn’t the best news. As I’d previously been shouting from the rooftops about how well he was doing. The doctor that morning was one we hadn’t met before, but as the day wore on her face become very familiar. She seemed to keep checking on Arlo and asking me when his dad was likely to show up. This felt very strange and it made me feel uneasy. I knew Arlo wasn’t very happy today, but I’d learnt to look at him as a whole, and although he was requiring slightly more support he was still very settled. My only concern was that throughout the day he seemed to be increasingly swelling.
During the afternoon, I met up with a lovely lady called Annabelle who I had been put in touch with through Ciara from Little Heartbeats. I had felt unsettled on the neonatal unit today and as much as I didn’t want to leave Arlo’s side, I needed a break for a while. Annabelle lived close by and her and her husband has called in for a meeting of the Honeysuckle Bereavement Support Group and invited me down for a cup of tea and a chat with them. Annabelle and her husband Neil told me all about their gorgeous son, Lucas, who was born after her waters broke at around 24 weeks. Lucas fought courageously and lived for 2 weeks in neonatal intensive care, before catching an infection. I found it so endearing how their eyes lit up with fondness when they spoke about their boy, how their smiles were genuine and I didn’t see a glimpse of sadness, even though the pain they had experienced must have been like no other. Meeting others that have been on the neonatal journey too felt comforting, they too knew that it was like balancing on a knife-edge with all your emotions stacked up on top of you. But even in the saddest of times they had come through and were expecting their rainbow baby (a baby born after loss) in just a couple of months. (See photo for rainbow baby explanation) I could have spoken to them for hours; they made me feel so at ease and comfortable on a day when I needed it the most.
The doctor badgered me all day, asking me when Day was going to arrive. He was travelling up the motorway on the way back from riding a trial. It was actually beginning to stress me out, I knew she was concerned about Arlo and I, but there was nothing I could do. I couldn’t jump on my broomstick and go and collect him or magic him to my side, and if I could have, believe me I would have! I found myself hiding to avoid her gaze at one point and phoning Day and telling him to hurry as I needed to know what she needed to say. But as scared as I was to ask, I didn’t think she wanted to tell me. All the while Arlo plodded along, staying stable, but not overly happy, not cheeky, not himself.
Eventually, after the longest day, Day arrived at 6pm. He quickly saw Arlo before we were ushered in to see the consultant. She didn’t beat around the bush.
This was it.
It was coming.
The talk.
 She didn’t think Arlo was going to make the night; she was convinced his kidneys were failing because of the lack of urine output and increasing swelling. His blood pressure also seemed to be dropping, which hadn’t happened before. Those words were met with a deathly silence. What do you say? Do you scream and shout and tell them they’re wrong? Do you accept it and roll over and say your goodbyes? Do you leave the room and bury your head in the sand? (The realisation that was what I’d been doing all day suddenly hit me.) What is the correct response? There isn’t one. You would have thought we would be used to this conversation now. But you never ever do, sometimes the further your baby has fought to get to, the more difficult it is to believe things are going wrong.
I know we were in that room for a long time, but I can’t tell you what was said. I truly think I’ve blocked that out of my mind. I remember those words, reaching for a tissue, and crying. I don’t think I said anything, I’m pretty sure Day did all the talking. As I listened to the words that flew back and forward like a tennis match, it became apparent to me that this doctor didn’t seem to have a plan for Arlo. A lot of the time it is up to the babies what they do, but I felt like Arlo wasn’t giving up just yet and that I wasn’t ready to accept her thoughts. I felt from him he was still fighting, call it mothers intuition, call it blind bloody hope, call it stabbing in the dark, but I just didn’t feel this was his time. She didn’t know Arlo, she didn’t know how long and hard he had fought to be here. She didn’t know Arlo was a ‘ninja baby’ as his brother has since named him, because he knew how hard he tried.
The one thing she did agree to do was to add in some medication that would hopefully raise his blood pressure, but otherwise it was up to Arlo.
As we left the room Day and I hugged tight and turned in different directions. It is times like this you realise that although you are on the same path and have been dealt the same devastating news, you cope in different ways. And that’s ok. Day decided he needed some time to process things and headed back to the flat. For a moment I was torn, but then I thought about things rationally, Day needed his time to reflect on the situation and I could be there and I wouldn’t really make a difference at that moment. And with all those thoughts whirling round in his head he wasn’t in the right place to see Arlo. I would be heading back to the flat later anyway or if things weren’t going well Day would be heading back here. If I was still pregnant I would have collapsed into his arms and sobbed, like I had done many times before when our baby was fighting inside me. This time our baby was fighting all by himself and I wasn’t going to let that happen. I knew where I should be. We were coping in different ways, and that was ok, he wasn’t going to force me to come back to the flat and I wasn’t going to force him in to see Arlo when he needed time.
 I decided I needed to do Arlo’s cares and be by his side. Mary one of Arlo’s favourite nurses was waiting outside for us. She hugged me and told me to go to the flat and that she would do Arlo’s cares and look after him. I looked at her and shook my head. I spoke more sternly than I meant to when I said, “No, I’ll do them.”
I strode off to be by Arlo’s side.
 If there was a chance Arlo wasn’t going to make it through the night, then there was no chance I was going to miss caring for him that one last time. I changed his nappy and bathed him all over, carefully applying his cream, savouring every moment terrified it would be the last time. By this time the staff handover was happening so they asked me briefly to leave the room. I went to express while I waited, I would have got things off my chest too, to anybody who would listen, but there was no one there. The silence in the expressing room felt so loud and daunting, like an empty hospital; corridor at night.
 When I returned to Arlo’s room, his nurse who he would have overnight came over to me. She had obviously been informed of the conversations that had taken place, and when she opened her mouth she spoke the words I had been waiting 20 days to hear… “Would you like to hold Arlo?” I instantly burst into tears. I couldn’t think of anything in the world that I longed for at that moment.
I quickly text Day and told him I was going to hold Arlo, but probably wouldn’t be long. The preparation to take him out for me seemed to take forever. Seconds ticked by as I sat in the hospital visitors chair. They tugged the ventilator tubes from behind so they would reach over to the chair I was sitting in, they made sure all Arlo’s wires had enough stretch on them for him to be moved. Eventually and most terrifying, they had to take Arlo off the ventilator and reposition the tubes around his incubator before reconnecting him, during the stop-gap Arlo had to be manually ventilated by a staff member. It was some operation to manoeuvre this tiny creature into my ever-ready arms.
He was finally lowered into my arms. A moment I had been hoping for. To begin with he wasn’t happy, his alarms going off, left, right and centre at the upheaval. The fact someone had opened his little fish-bowl was bad enough, but this time they had the cheek to wake him, poke and prod him relentlessly, rudely remove his ventilation before putting him down on something other than his little bubble. The nurses hovered, unsure of whether he would settle or whether he would need intervention and have to be put back and taken from me.
All of a sudden the alarms stopped and he relaxed, realising where he was, where he was supposed to be all along, in my arms. The aching that had been ever-present was ebbed away.
Arlo settled in my arms with his blanket over him, his alarms didn’t go off once. He knew this was the place where he belonged and if he made a fuss, he would be plonked backed in his fish bowl in an instant. The nurse had told me to keep his chest as flat was I could, so I had to hold him with my right hand under his chest as my left hand cannot bend like that because of a break when I was younger. (The slippery algae-covered rocks were not suitable for star-fish hunting.) This felt most unnatural, because when I hold a baby I cuddle them in my left hand so the right hand can be used for holding bottles and the like. I talk about that part like it was the only unnatural part of it. Nothing about it was natural, the alarms, the wires, the clinical smell, the rigid chair, to name but a few, the only thing that was natural was holding my baby. And now that I had him I didn’t want to let him go.
I didn’t shed one tear when I held him, I didn’t want to waste the precious time crying, I wanted to love every moment. Looking at him and breathing him in, I had been made to believe that this was a moment that was never going to happen. I wanted to take in every millimetre of him, I wanted to hold his hands and touch his tiny toes, this was something I was deprived of as his poor little hands and feet were too sore to be touched, I couldn’t place my hand on his chest or stomach for fear of stopping the ventilation from working. Instead I tried to commit every part of him to memory. I noticed that his previously huge eyes seemed tiny and sunken with the swelling, but deep down in there I knew he wasn’t going anywhere.
Without the constraints of the incubator, it was easier to whisper to him and for him to feel from me how much I wanted him to get better, how much I wanted him to prove those doctors wrong once again, how I didn’t want this be the only time I held him. From him I just felt like he wasn’t giving up just yet, how he toyed with the idea of making the doctors think they were right, but that he still had something else up his sleeve to surprise us.
A head poked round the divider that gave us some privacy, “I think he enjoyed that.”
“I did too.” I replied.
When I finally liked at the clock, Arlo had been in my arms for over an hour.
The process was reversed and Arlo was safely placed back in his incubator. Before he was returned I whispered to him, “Keep fighting.”
The nurses promised to phone us if anything changed overnight. I felt so happy having held him for the first time, although still concerned about the doctor’s words.
I checked my phone at 3am when I got up to express, no news was good news, I phoned them to confirmed this and they did, he was stable and had even had a big wee.
Upon entering nursery 7 the next morning, we were greeted with the news that Arlo’s nappy had already been changed. Initially I was upset by this because that’s my job, until that was; I learnt that it has been changed because it was so wet! It actually needed changing again! The medication they had given him to increase his blood pressure had worked, it was now at the correct level and in doing so there was enough pressure for his kidneys start production again!
He was still very swollen, so he had a lot of weeing to do, and oh how he was doing that!
The moment I took his nappy off to change it, he sprung a leak all over his incubator! Just like his brother, likes to be free and easy rather than wee in the confines of a toilet, or nappy!
Once again, Arlo Arthur Owen had defied the doctors and defied the odds all over again.
This was just the beginning of the chaos caused; he had a new roommate now after all.

The Expressing RoomWhere you get things both out of AND off your chest!

Arlo was truly showing off at the moment. It was commented that Arlo was ‘ripping up the rulebook’ it was even mentioned that he ‘hadn’t done his homework and read the rulebook’ as he seemed to be making things up as he went along! When the doctors came to him on their rounds every morning their plan for the day usually started with a shrug and a pregnant pause while they scratched their heads! Arlo had them running round in circles like headless chickens while he made them wait to decide how he was going to play things today and they knew it. He was keeping them dangling by a thread, there was no guessing how he would react, and if you dared to, you were usually proved wrong. Arlo was truly unique and our story was eventful and special to us.

Everyone in neonatal has their own story. Everyone has their own rollercoaster ride to share. And no two are the same.


Most of these stories were expressed in the expressing room.


Neonatal is a constant conveyor-belt, there are families arriving and leaving all the time. New faces mix with the experienced neonatal family. This shift is most apparent in the expressing room.


Let me explain a little about the expressing room…


Effectively, it’s a milking parlour. But instead of rows and rows of attachments in a cattle shed, like you might be thinking, there are only a few seats in a small room with expressing machines next to them. Instead of being herded in like cows and being attached to the machines to suction the milk by a farmer, you come at your own will! You sit down and use your own, sterile, cups to hook yourself up to the machines, and screw the bottles underneath to catch the milk.


But effectively you are milked by a machine, like a cow.


This is a daunting place to go when you’re a ‘newbie.’ A few women sat around, chatting away in the clinical environment that plays at making you feel comfortable in a situation that just isn’t comfortable.

The rhythmical whirr whirr of the pumps as they did their job, needing and suctioning.


You have to get your boobs out, in front of people. I bet even the exhibitionist breast-feeders, you know the ones. The ones who have to feed their baby with full-frontal boob display in the middle of a restaurant or a swimming pool (yes you heard me!) rather than choosing to meet the needs of their hungry baby discreetly, would have something to say about the level of exposure that goes on in that room, because it’s such an unnatural place to be. And to perfectly honest, this can be overwhelming to begin with. As a private person, getting my boobs out in public has never been on my ‘to do’ list. To start with I felt so uncomfortable, sitting in the corner fumbling with the pumps trying to keep myself as small as possible, which always resulted in things getting dropped on the floor or exposing myself further out of awkwardness, while others sat there looking at ease, flicking through phones, chatting occasionally. The thing is you don’t have to look, you just become aware of lots of boobs, boobs everywhere.


This little room in the heart of the neonatal unit seems terrifying to begin with, but very quickly it becomes part and parcel of life. It becomes the room where so many conversations happen. The expressing room is necessity if you’re feeding your baby. That precious liquid is so important, and so is keeping up your supply. It’s not the type of thing that can be done once a day when you get home, it needs to be done every 2-3 hours, day and night, or else you walk around with a couple of rock-solid, tingling, throbbing, leaking bowling balls stuck out in front of you. (Believe me, if it goes over that allotted time- you know. Oh, how you know!) And those boobs may look appealing and fruitful at that moment, but touch, squeeze or accidentally knock and you take your life in your hands! You’ll either get slap across the chops or if you dare to squeeze you’ll get the same result of squeezing the flower on a clown’s lapel!


Other places on the unit, such as the parent’s room are a choice, somewhere you go to grab a quick sandwich, or have a quick coffee, or a quick phone-call. Quick. These moments are sometimes rushed, so very little conversation happens and as much as the doctors and nurses tell you to take time for yourself, the only place you want to be is by your baby’s side.


So the milking parlour, as it was affectionately known, was the place where most conversations happened. Where I was ever-so kindly offered a lift to Asda, (or ‘The Asda’ if you’re scouse) and where the plans were made to take me there; where we offered advice to each-other on expressing tips; where we checked in on how everyone was doing, how their babies were doing that day/hour/minute; where we shared our own incredible, individual stories; where there was mostly laughter, and very little crying (thank goodness, because hugging could be a little awkward!).


No-one in neonatal has ended up there without a story to tell, and the expressing room is where they were expressed!


I remember a lady who had her little girl at 23 weeks; she told me how she laboured fast and unfolded her baby to reveal she had a daughter after she caught her!


A lady had realised she was in labour, and as she didn’t have family close that could drive her to the hospital she phoned an ambulance

in the middle of the night and there wasn’t any available. She then phoned a taxi, getting more and more anxious. Time went by and in agony she phoned back to see where it was. They responded saying they thought she was drunk because she was so distressed but they would send another one! She was only 32 weeks.


One of the lovely ladies I met and became very friendly with had a little one who was born at 24 weeks. He was doing so well in neonatal. Tragically, his sister who was born a year previous didn’t survive. So this made him even more precious.


There were two sets of twins in the unit too. One of the mum’s waters had broken while visiting family in Ireland. Her babies had been born there and were in the neonatal unit there. Once she was discharged they had to pay for hotels to sleep in so they could be near their babies. As soon as the opportunity came up and they were stable enough, they had been returned to Liverpool so they could grow and become strong enough to come home.


The other was sped by ambulance from 2 hours away to deliver her premature twins. She told us about how she had lost a little girl at a few months old to a rare, degenerative medical condition. So this time no chances were being taken and as soon as she showed signs of labour she was whisked to Liverpool where her twins were born.


The thing about twins is they have to be in separate nurseries. I don’t know how these mums did it, splitting their time between two of them. Riding the emotional rollercoaster with one was terrifying enough, never mind riding separate tracks at the same time!


Another mum had a very premature baby and was struggling to express for him, which she found really upsetting. She wanted to do everything she could for him because she had already lost a boy at 19 weeks. She was very upset when talking about him, but said her family don’t talk about him and in her words she said, “I can’t grieve because of religion.”


It was a bit of a blur, but I also remember one of the most premature babies Liverpool Women’s had ever cared for being born before I was there and still being on the unit. She was born before 23 weeks!


Her story really touched me. Her mum spoke very broken English so didn’t speak much, but always had the warmest smile on her face.

I thought about how far her little one had come. She had been on an invasive ventilator for 3 months, that’s a long time to be ventilated, but her little lungs were just not strong enough to come off it. After lunch one day, as I returned to the neonatal unit, I went to the lockers as usual to put in all my belongings and made sure I was ‘bare below the elbow’ to reduce the risk of infection. I smiled at this lady and she warmly smiled back. I went to carry on my way to nursery 7 when she called me back and asked me if I would help her. As I looked back I saw she was writing a card. She explained to me in her short phrases, carefully choosing each word, that yesterday, her daughter had come off the ventilator and had been put on CPAP (which uses puffs of air to make sure the lungs expand rather than being as invasive as the conventional ventilator). Then earlier that morning, the nurses had surprised her and her daughter had improved so much that they had put her onto nasal cannulas instead! What an amazing turn-around in less than 24 hours! She had asked for my help to write the card to the nurses in English. I read her card and understood it completely, first time. If I could read it then so could the nurses. She didn’t need me to tell her what to right in perfect English in my words. What she had written was heartfelt feelings in her own words and it was truly perfect in its own right.


A mother thanking these special nurses and doctors for the incredible work they do day in, day out.


There was also a lady I didn’t actually meet whilst in neonatal. Her son had passed 2 days before Arlo was born. He was in Arlo’s bed before him, I connected our two boys after I leant Rocco’s name. I remember his mum coming into the neonatal unit to drop off some goodies for the neonatal parents. I saw how Rocco growing his wings had affected everyone who knew him and his family, because they were part of the neonatal family and the ripples of Rocco’s death spread throughout the comrades.



I remember every single one of these ladies at some point having a terrifying scare, where something unexpected had happened and their baby had taken a turn for the worst or they were waiting on results of brain scans or to see if their baby’s bowel was functioning properly. Every. Single. One.


That’s one of the things that really got to me while in neonatal, and it’s terrible because people looking in from the outside think they are helping.


And it starts like this…


“I was talking to someone the other day and their friend’s baby was born at 24 weeks, weighing 1lb and their 6 foot 6 now! Massive rugby player, graduated with a 2:1 from Oxford University.”


Brilliant! So did Ethel’s nephew, Brian’s next door neighbour, Marion’s ex-boyfriend and Laura’s twins.


I’ll bet you that you have no idea what their poor parents went through for them to get there. You’ll have no idea about the expressing room chats, the breakdowns to complete strangers on those days when that rollercoaster is skating low to the ground, threatening to de-rail. You have no idea about how many times those poor parents were told their baby wouldn’t make it through the night. You have no idea the times their baby took a huge backwards step after celebrating the slightest millimetre forward. You’ll have no idea that they 6 foot 6 lad had to be resuscitated when his parents thought he was on the home straight, leaving them standing there while he was given the oxygen bag to boost his oxygen levels and a doctor gave him chest compressions. You’ll never know that he had to overcome 2 infections and a bowel operation, and that all 3 nearly cost him his life and his parents their baby.


But he’s 6 foot 6 now…


There is that assumption that modern medicine is a marvel, which it is. It’s assumed that if babies born early are just kept in an incubator till they’re big enough to go home. It’s not a miracle worker, neonatal is so unpredictable. Please don’t assume that every baby is coming home or even that it’s going to be an easy ride if they do. (Don’t get me started on the recent premature baby nappy advert.) Everyone I spoke to had been through so much.


Everyone had had ‘the talk.’ Usually more than once.

Our talk was coming up… 

But one place you had to go, come rain or shine, was the expressing room. The place where you know everyone understands how you feel. The place you go to get everything off your chest.