You won’t be the same person…

They don’t call neonatal a rollercoaster for nothing. We had climbed high, clogs turning, the chinking of the chains dragging us up and up from the depths notch by notch.I had been down there, with Day leaving, Arlo not making progress and being left alone, I was a mess. Day was so concerned about me being alone that he organised for one of my old friends to come visit. She only lived not so far away and I was so grateful for the company, just someone to come and sit with me for an hour or so, talking nonsense and catching up on gossip was exactly what I needed. And the fact Arlo had decided to turn a corner had made me much happier too.

 

I was flying high the next day, hoping we were moving forward, one baby-step at a time. The doctors were all amazed on their rounds that morning; they were pleased to be proved wrong by the little fireball in front of them, Arlo Arthur. I was immensely proud that he had shown them all what for! It was even commented upon that he was ‘showing off’ with his oxygen levels and the nitric oxide was being weaned down too. This had to be done ever-so-slowly though, he wasn’t happy if he noticed. They had to decrease it in detriments of 1 at a time, he was doing perfectly well and holding his own with this, however, if you turned it down by 2 notches – he most certainly let his feelings known, by setting off his alarms. You see, that’s how neonatal babies communicate, if they don’t like something they set their alarms off, just so you know not to do it again. This could be opening their incubator door, it’s like someone opening your bedroom door when you’re trying to sleep and injecting you against your will! And for poor Arlo, that happened LOTS! Sometimes the babies in the rooms had competitions; they couldn’t have anyone else having more attention than them! (I’ll come to this competitive streak later, when I talk about Arlo’s little friend, Lily.)

Arlo had a different nurse today, I hadn’t seen her before, but he wasn’t shy of showing her he didn’t want to be messed with. I sat back and watched her caring for Arlo. Her presence just emanated empathy towards these tiny babies she was caring for. Whenever she moved Arlo in a way he didn’t like or did anything he wasn’t happy with, or if she had to disturb him for the 5th time that hour for more medication, she apologised to him. I can hear her scouse twang saying, “Sorry, babe, sorry, sorry.” I was so touched, she was treating him with such dignity and respect it brought tears to my eyes. I knew when she was on and I wasn’t with him, that she was caring for him like a mother would. Like I would.

 

 

I was getting used to finding my way around the neonatal unit, the bright corridors the awareness of the ever-moving cogs caring for every baby on the unit. The quiet hustle and bustle in all the nurseries, the warm smiles the parents gave each other, the solidarity. It was our own subtle way of saying we were in this together without fist-bumping and saying, “solidarity sista!” 

This was comradery was about to become the reason I got through the next few days.

 

I returned to Arlo’s room after going back to my room to express, I was yet to use the milking parlour on the neonatal unit. I still had the privacy of my own room. The doctor was stood next to Arlo’s bed. Now, I was always happy to see him being cared for, but there was something about the doctor’s face that told me she wasn’t happy. After I had gone through the ritual of washing, drying and disinfecting my hands, she told me they weren’t happy that Arlo’s infection indicators had risen. Instantly I was panic-stricken, we had been told that if he got an infection he wouldn’t be able to fight it. The doctor reassured me as much as she could, he was being put on wide-range antibiotics and his blood cultures would be sent off, as soon as they had the results of these his antibiotics would be changed and tailored to fight that specific infection. Unable to do anything- I sobbed. And sobbed and sobbed and sobbed. Completely helpless, I looked at this little fighter in front of me. He had come so far, he was making improvements, how could he be getting sicker? Arlo’s nurse came to comfort me, hugging me tight, but she didn’t have any words, and I didn’t have any for her. I felt like I should be asking them to do more, but I realised there was nothing more they could do. And there I was, free-falling down the other-side of the track, unable to do anything, flailing helplessly, screaming silently.

 

She left me for a while and I sat with Arlo, hand on him, skin to skin, letting him know I was there for him no-matter-what. I saw her talking to the doctor outside the door. Then they disappeared.

 

Day called and I left Aro’s side to go to the parent’s room to speak to him (or sob incoherent noises to him down the line). I just couldn’t hold it together and I hated feeling like I was feeling sorry for myself. Terrified, alone and fearful of what the future held for Arlo, it was just too much, and I was too emotional to cope with it.

 

After briefly updating Day on Arlo, I sat and gave myself a few moments to compose myself, only a few, I needed to get back to my boy’s side. As I stood up and moved toward the doors, two faces appeared in the glass, the nurse and doctor. They explained that they had spoken to one of the other mothers on the unit, a long-timer and very experienced at that. She was going to come and find me. I wasn’t sure as I didn’t want to be a burden to anyone else but they were adamant she didn’t mind as she, herself, had been there.

I met this lady at the expressing room sink while I was labelling my milk ready to put it in the freezer. She didn’t say anything; she just put her arms around me while I sobbed on her shoulder. After I soaked her top and the salty tears dried away (for now), she spoke. I remember distinctly her first words to me, “You won’t be the same person you were when you entered the neonatal unit.” Those words echoed in my head, because I was already a different person. I’d never dealt with anything like this before in my life, ever. I’d never felt emotions this strong or had to cope with anything completely on my own. In situations like this previously, Day had never left my side, he’d been a physical support as well as emotional.  

Her name was Jo and her little girl was born at 23 weeks, she had been on the neonatal unit over 3 months. She told me about how they had had ‘the talk’ 4 times. They had been told their daughter was unlikely she would survive the night, 4 times. I looked at her and I could tell she had changed since her experience in neonatal began, I didn’t know her before, but I knew it had changed her by the way she spoke. And I knew then how much truth she spoke, this would change me forever too. We talked for a long time, as people moved through to the expressing room and back out again. After this encounter I knew I was changing too, no, I knew I had to change; I had to harden myself and become stronger. That’s who Arlo needed me to be, that’s who I would be. I couldn’t cry at every test result and let it break me down, as scary as it was, I needed to look at Arlo as a whole. As a whole in that moment he was making progress, no matter what some results on a piece of paper said, he was still reducing his nitric and still showing off with his oxygen levels. He was happy and content, and if he wasn’t he let everyone know. I had to put my trust in this incredible little fighter, I had to rely on him to let me know when things weren’t right.

I began to grow I confidence and my relationships with the other parents evolved into friendship, this was especially important for me being alone a lot of the time. I realised a lot of the mothers on the unit were alone too, they had been here so long that partners had to return to work and family visits were few and far between.

 

Now, in the corridor the solidarity nods become conversations, the waves and smiles become enquiries of how our little ones were doing, we became part of a team. An unsuspecting bunch of people thrust together in the most unlikely of circumstances came to rely on each other during the most difficult time of their lives.

 

Jo was right, I wouldn’t be that same person ever again.  

 

Some things seemed to blend into one, other things stuck out to me and I didn’t know why. It is all clear now, but at the time it wasn’t. There was a little baby in the bed next to Arlo, we had brief conversations with his parents, they mentioned that Arlo was a name that was on their list as was Rocco. Rocco was the little boy who had been in the bed before Arlo. I had noticed his name on the wall behind the bed, and I smiled because that was a possible name for Arlo right up until the last second (thanks Ella). I found it comforting, familiar, that name was on the wall reminded me of a happier time at the start of the pregnancy when we had spoken about baby names with joy and excitement, before the conversations became too fragile and uncertain. Now I am comforted by the name Rocco for a different reason, I am happy to call his mum one of my friends and a great support to me. Even though our paths never crossed during our stays, they have now, even meeting up briefly last time I was in Liverpool. Tragically, Rocco passed away 2 days before Arlo was born, so his mummy, Lora, knows exactly what we have been through.

 

Advertisements

Unspoken words 

I was wheeled out of the Neonatal Unit back to labour and delivery, but was allowed to return to my room on the maternity base. I say wheeled, I mean pushed. Pushed or I would never have left. I could have sat there all night and zoned out everything around me. Leaving Arlo was the last thing I wanted to do, but it was clear to everyone how absolutely exhausted I was. I had protested a few times and bought myself a few more moments with our boy. Day was concerned about Arlo, but about me too. Back in the room he was put up on a camp bed next to me. We both fell into bed absolutely exhausted. (Day fell; I lowered myself gingerly.) There were so many unspoken words between us. We didn’t want to say the things on our mind to be honest.

Too scared to hope; too scared to face reality.

I know I certainly felt unsure Arlo would make it through the night. Even though I didn’t want to acknowledge the vibes that emanated from the doctors on the neonatal unit they played over in my sub-conscious. The unspoken words. I was anticipating a call to the neonatal unit during the night. Despite all of this we both still felt in high-spirits, our miracle, Arlo Arthur had survived long enough to meet us. He was alive. We were extremely worried about him and what the neonatal journey would bring, but he was here.

 

The tea-lady alarm signalled the dawn of a new day. The first thought on our minds was Arlo and the first words from our lips were, “no news in good news.” Day went to see Arlo, but I had to be seen to first. I had to shower. This was an experience in itself. I also had an amazing midwife come to help me start to express. I found this difficult to do myself. She had a tiny 5ml syringe and massaged to help stimulate to flow and collected some colostrum. Amazing- I had produced this, I had made this to help my baby. I was in awe. I was proud. It was labelled and stored in the freezer for Arlo, whenever he was ready for it.

I was wheeled down the corridors to see our boy. We pressed the buzzer outside the unit and told them we were Arlo’s parents, saying that felt weird. We were used to being ‘Alfie’s mum and Alfie’s Dad’ now we were someone else’s parents too.

He lay underneath his sunbed, still vibrating gently. Hands were washed and disinfected and as fast as we could, but not fast enough. We were beside him once again. We sat there willing him to fight to stay with us, to keep proving everyone wrong. Over the next couple of days this was our routine. Back to the room to eat and sleep before returning to Arlo’s bedside. It was then I was able to notice the noise of the oscillator and all the flashing machines that surrounded him, the acrid smell of alcohol-clean that clung in the air and the bleeping of drips. They were scary, really scary. I decided to take a picture, to show Alfie what to expect when he came over to see him and for us too, for Arlo and his story. To show him moving forward as the machines became redundant and the amount of drips diminished because of his progress.

 

After a couple of days we were called to the see the doctor. He gently explained to us that although Arlo was stable they had found something on his bloods. He had no white blood cells, none at all. They didn’t know what was causing it. It could be an infection or a problem with his bone-marrow. They recommended we bring Alfie over to meet his brother. They pushed really hard for this, and we had to wonder if they were concerned he wouldn’t survive long enough to meet his big brother. The doctor explained that if Arlo caught an infection they could give him antibiotics, but with no white blood cells he would be unable to fight himself.

They didn’t know Arlo.

 

We had planned for Alfie to come over in a couple of days. Day was to return home 4 days after Arlo was born. He wheeled me in my wheelchair the day after Arlo was born. I have to say I wasn’t a fan of ‘Daymo the carer.’ His driving of the wheelchair scared the life out of me; empty corridors are race tracks after all. And there was that time when he forgot something from the shop, abandoning me on an angle in the middle of the walkway where people glared at me as they busily tried to get to their appointments. Unable to do anything else, I laughed (cautiously) and avoided eye contact! In preparation for his return home I started to walk 2 days after my c-section. He pushed (raced) me down to the shop and I was to walk back. I can’t remember what he did, but it resulted in me doubling over and holding my stitches together with laughter.

We had to have this, we had to have these moments of uncontrollable laughter. Otherwise the constant worry was too much to bear.

Day leaving terrified me. Thinking about it now makes me well up. There was no change in Arlo’s condition since birth. He was fighting hard, but was extremely poorly. We had to have a talk, and if things changed Day would be with us as soon as he could. Just like Arlo’s birth. I didn’t feel strong enough to go it alone. I was so emotional. I didn’t know how I would cope. I was terrified I wouldn’t do Arlo justice, terrified I wouldn’t hold it together while talking to the doctors, terrified of being alone. My heightened emotional state didn’t help things either. Everything was magnified and amplified and felt truly overwhelming.

The short, sharp fact was; Day had to leave. He would be back in a few days, but he had to leave and I would be alone. It took all my strength not to cling onto his leg and scream at the top of my lungs. It wasn’t easy for him either. He didn’t want to leave, but he had to. I just wanted us all to be together as a family. I wanted to still be pregnant and be at home with Day and Alfie. I wanted both my boys together.

Getting used to picking myself up, I had to do just that. I had some time to cry, but then it was time for a quick dust-down before I slowly walked, still hunched, to the neonatal unit. Frustrated with myself for not being able to move faster. I had a reason to be here, a very important one. Arlo Arthur Owen. Managing to justify the fact I now had MORE of a reason to be here, I had a poorly baby who needed me.

Hands were washed and disinfected, growing in confidence I settled myself by Arlo’s side, where I would remain as long as I was needed.

When my eyes grew heavy after staying longer than before, I kissed my fingers and placed them on his head and with whispered, “keep fighting.”

 

That he did. The very next morning we had our first lot of good news.

Upon arrival the next day, I was told Arlo no longer needed the oscillator.

He was showing just what he was made of. Every doctor was amazed but this was only the beginning; showing off and proving them wrong!

 

Skin to skin 

First meetings
C section mum’s with babies in neonatal always recover quickly.
That’s what the midwife told me as I heaved myself off the bed and into the wheel-chair. Some people think having a c section is the easier way of giving birth. I can assure you that is doesn’t feel it when you have to lever yourself up without the use of your stomach muscles because they have been hacked open! But when you have an amazing little warrior in the neonatal unit, that you’ve yet to meet, you’ll do anything to be by their side.
The trip down the corridor seemed to take forever. I just wanted to be with him. I felt sick with anticipation, I just didn’t know what to expect. I’d already seen him briefly wrapped in his blanket before he was whisked away. I knew he was going to be small, but I had no idea what else to expect. 
Nothing could have prepared me for what I saw as the doors to nursery 7 were opened. It was dark, the lights were off because it was nighttime. There were many staff in the room, too many faces for me to pick just one of them. I scanned them quickly they all smiled, but it didn’t touch their eyes. I picked up an air of concern and sympathy almost. It was only there for a second and I wasn’t able to hold onto it or focus on it, but I felt it. Another reason I didn’t hold onto it is, in the incubator in front of us was our boy. Everything else blurred into insignificance. This was a sight I truly thought I would never see. Our Arlo. Alive. 
It was was a moment the doctors told us we would never experience. We had prepared ourselves for so long never to meet him while he was alive that this moment was overwhelming. I wish I could remember it more vividly, I was still woozy from the epidural and loss of the red stuff. 
I do remember seeing a blue glow and him having his shades on, looking like his was on a sun-bed. I was sharply whisked away to wash and disinfect my hands, but I struggled to draw my eyes away. It had been a long, painful 7 weeks since that fateful scan and I didn’t want to take my eyes off him. 
I was just overcome with emotion and in awe of this tiny fighter in across the room from me. As I was wheeled close to him, I could see how poorly he looked. His skin was bright red, dry and tender-looking like he had been sunbathing too long. (Like his daddy every time the sun breaks through the cloud.) My instinct was to pick him up and holding him close to me. To take him away from everything to hold him and make him safe in my arms. The realisation that I couldn’t make him safe winded me like a punch to the stomach. And the tears overflowed once again. The giddiness was gone. I hadn’t even touched him because I was too scared I would hurt him. Silent tears flowed down my cheeks splashing onto whatever I was wearing, I don’t even remember. The doctors began talking things at Day and I. I say talking ‘at’ because I cannot remember a single word of what they said. The only thing on my mind was wanting to pick up our little miracle and feel him close to me. I heard Day speaking to the doctor, but again, I couldn’t focus on anything that that was being said. It was all too much, and I was using all my strength to be next to our boy. The lights, the machines, the nurses and doctors didn’t matter right now. They were there in the background, but not my priority. 
Until the doctor addressed me directly, this is one of the only things I remember clearly from that night, he asked me if I was going to express to feed Arlo. I don’t remember which doctor it was, I don’t remember his voice, but I remember his words.

 “A mother’s milk is medicine tailored to your baby, do you think you will express for Arlo?” We both answered at he same time, Day saying, ‘no, I don’t think…’ and me interjecting with, ‘ yes, definitely…’ 

I knew I had to feel I was doing something and I because fiercely protective, I wasn’t going to have anyone else feed my baby, if it was the only thing I could do for him and I’d be doing it! (Unless I couldn’t express as I didn’t know if I could yet and in that case I’d already decided I would do what I could and use milk donations from amazing mummies on the unit.) 
This may well have been exaggerated in my fuzzy, post-operation blur, but as I answered yes, Day swooped his head in an over-the-top manner around as if he was scooby-doo! In my head he also made the, “huh?” noise as he spun round, but that could well be fabricated as I’ve replayed it in my head! 
You see, the reason Day said no is because I didn’t breastfeed Alfie and I was almost against it. I’m not making excuses, now I look back at my younger self and ask myself, why the hell didn’t I?
The answer is I really don’t know, it’s not an excuse, but to be honest I felt a bit railroaded by the whole breastfeeding malarkey. I know they are to push breast feeding, but I felt there was far too much pressure from everyone. Even Day was extremely pro breast feeding. I’m sure I told him repeatedly that they weren’t his breast and if he had his own he could make the decision. Now, being more informed to make my own decision, the whole expressing talk coming at me from a different angle and not being made to feel I was a disappointment if I didn’t, I made my own decision to express for Arlo. I think when you’re pregnant so many things are out of your control that you want a bit of breathing space and no pressure. And this time I had that. It was best for our baby and that is what I would do. I would also go back and slap my younger self round the face, but I’d also tell the medical professionals to take the heat off their patients a little. 

(There are other factors too, but that’s for another day.) 

I put some disinfectant on my hands and rubbed it on well and I leant forward, opened the circular door that sprung out towards me. I hovered my hand over the teeny boy in his teeny nappy lying there. It was then, when I went to touch him, that I realised he was shaking all over. I turned to the doctor who was still hovering around us, he saw the confusion in my eyes and explained that Arlo was on an oscillator, it was gently vibrating him to help his lungs open to their full capacity. He was also on nitric oxide to help him too. Basically, he was maxed out on everything. 
I tried to block that out, I wanted quality time to say a proper hello to our baby. With my hand still hovering I looked for a space on his tiny body where I could touch him. I wanted to feel my skin on his, but there was hardly any room. Wires covered his entire body. It was truly overwhelming. I briefly glanced at the multitude of machines that surrounded him and connected to all the different coloured wires, but I didn’t feel I needed to know about them at this very moment. I needed that connection with my boy, 7 hours without having him with me was too much. I settled for placing my finger into the palm of his hand. Day told his turn too. So many emotions swirled around in my heart at that money. I picked up on the vibes of the room around me, they were all on pins. They were unsure if we knew how sick our baby was. If Arlo took a turn, they had nowhere to go. He was on maximum everything just to remain stable. What I don’t think the staff understood is that we had been prepared for the very, very worst for 7 weeks, so far Arlo had exceeded all expectations just by being stable. By being here, grasping our fingers right now. Sometimes the blur that surrounds you makes way for moments of clarity. 
That connection with your baby, touching their skin with yours is skin-to-skin contact, no matter how minimal the contact is. The tip of my finger was grasped by his palm, but we were connected.

Skin to skin. Mother and father to son.  

Arlo’s adventure begins

You never know how strong you are until being strong is the only choice you have. 
Never has there been a truer word spoken. And if you ask me, I wouldn’t describe myself as strong. Because truly, I’m not, I wasn’t; I didn’t feel it. Even now, after everything, I’m not strong, I just don’t have any other choice if I’m to make it through the day. 
The midwife picked up the scan and shook her head. “I’m just going to leave you on he monitor a little longer.” With that she tried a friendly smile as she glanced back at the baby’s heart and darted out the door. With a moment to myself, I had time to think. But I quickly realised I wasn’t sure that I actually wanted to be alone with my thoughts. The ‘thump thump thump’ of baby’s heartbeat comforted me that baby was still ok at that moment, but no longer reassured me. I was 27 weeks pregnant, we should have 3 more months before we meet our baby! But after knowing how to read the tracings and knowing the expectations from the foetal medicine unit I was more than sure that delivery was imminent. As I felt my stomach and pressed the button on the monitor as I felt my boy kick. How I wished I was in this situation 3 months further down the line. As much as I wanted to meet my boy, I didn’t want to just yet!
My thoughts were interrupted by a knock at the door. I expected the midwife to come back and tell me she has notified the doctor and that they would be round to speak to me soon. And that ‘soon’ would probably be a few hours away (as it had been previously). How wrong I was. The on-call obstetrician was there right away, along with other doctors, a midwife and a student midwife. The student midwife immediately came over and started measuring my legs I assumed ready for the stockings for theatre. Then she disappeared. The doctor spoke and told me she had already spoken to foetal medicine and they were adamant delivery should be today. Now. How I found my voice I have no idea, but is thought back the information pack from little heartbeats. I asked if I could be given a magnesium sulphate drip as this can help stop brain bleeds in premature babies. The doctor agreed as although baby was unhappy, and he was definitely better to be out than in, he wasn’t in immediate danger. 
The next plan was to get the neonatal doctor in to talk to me. This had been promised to me the previous week, but the neonatal unit had been on ‘red’ because it was so busy. 

After a chat with the neonatal doctor, I felt more reassured as there would be a full team there ready to work on baby when he arrived. 
The doctor was informed that my waters had broken early so she could inform the team.
She left.
As she was leaving the student midwife came back with a pair of green stockings when she ripped open the pack and started putting them on me, I finally broke down. Not the full scale sobbing tantrum I may have expected, but more the glassy-eyed lip-wobble of a terrified child entering school for the first time- having no idea what to expect or who would be there to comfort them when they felt sad. I needed to pull myself together, and be strong for our boy but it was taking every ounce of strength. Occasionally it would overflow once again. But I couldn’t let myself fall apart, I needed to know exactly what was happening and if I was a sobbing wreck I couldn’t do that. 
I realised so much had happened in a short space of time. In the amount of time it took the student midwife to grab a pair of stockings, it was decided that baby would be born, we had a plan for magnesium sulphate and the neonatal team were being prepped. It was too much too fast. She was amazing and really tried to keep me calm. I went to phone Day and I realised that I had no credit on my phone! I text him and he phoned me back, I told him baby was going to be born today, he didn’t stay long as he had to go and get a flight booked so he could be with me. But at the end of each phone call that day the, ‘I love you’s’ we’re thick with emotion. 
The next thing I knew I was being whisked down the corridors in my bed to the dreaded labour and delivery. 
In the blink of an eye I was hooked up to everything. I had cannulas in both hands, with various attachments going through them like a spaghetti junction! I was given a bolus of magnesium sulphate and then the rest was left to run. I was hooked up on a sliding scale for my insulin as of things did deteriorate I would have to go under general anaesthetic! I had begged and pleaded for this not to happen if at all possible, being a complete control freak with my diabetes- I just wouldn’t trust anyone else to do it for me! Obviously if it came to it I would have to for both of our sakes. But I wanted it to be a very, very last resort! 


The magnesium sulphate makes you feel like you are burning, like actually burning! I had a fan that was blowing a force 9 gale of icy wind at me and I still didn’t cool down, but it kept it bearable. Now, I’m not an aggressive person, and not normally one to make a fuss, but a midwife came in to do something or other to me which required moving the fan… I felt like I’d she didn’t return it would spontaneously combust! I was not best pleased when she forgot to return it to where it was perfectly situated to cover as much of my body as possible. I closed my eyes for a brief second and she was on her way or the door when I opened them. Through gritted teeth I gently reminded her to return it to its prime location! 
I’d been in contact with Day throughout, messages or he would ring me. I spoke to some family and friends. Baby had been happily heart beating away with the gentle chugging sound. Doctors popped in and out to check on baby and I at regular intervals. They seemed satisfied that his condition was stable enough. 
Time went in the blink of an eye this time. Labour and delivery had a different feel this time. Yes, I was terrified, but I knew we had a plan. Baby was going to be delivered and I was going to meet my baby boy! This time it had been decided baby was better out than in. This time I had a plan to make peace with. 
1.10pm…
A strange feeling washed over me and I suddenly felt a tightening of my tummy. My natural reaction was to put my hands to my tummy, which felt rock solid, and turn to the screen… I saw the tightening of my tummy rise and baby’s heart rate fall simultaneously. Now I was worried. As I glared at the screen and went to press the nurses bell, the door was thrust open and in came doctors and midwives, I have no idea how many as I don’t think I moved my eyes from the screen or my hands from my tummy. All of them glared at the screen while each person had control of a different piece of equipment, I assume ready to be catapulted to theatre at a moments notice. Standing in their allocated spots, waiting. Baby’s heart rate began to rise as the tightening ebbed away to nothing. A collective sigh of relief echoed around the room. But the decision was made, Baby was being scrutinised and I would be going to theatre in the very near future. 
I immediately picked up my phone to call Day, panic rising in me! I couldn’t dial the numbers. I didn’t know a single person over here, I was heading to theatre to deliver our baby. Alone. But I also thought of Day, getting his stuff ready to get to the airport. Ok I had the stress and worry of being here and what was going to happen to baby, but Day had the stress and worry of not being by my side and worrying about us both. My heart did go out to him! We are both the type of people who don’t sit in traffic, we are doers, we would rather find an alternative route than sit in traffic becoming frustrated. So I can’t imagine his frustration sitting at an airport waiting to be with us. Usually we wait till the end when disembarking a plane because we can’t be bothered being jostled around while people get their luggage. I could imagine Day this time with his face pressed up against the door eager to get off and get moving to see us. I just wanted him by my side. This was a moment we thought we would never get to, our baby actually being delivered and being given the chance to be saved. I felt incomplete without him there as we had travelled this journey together.
I was scanned very quickly by the doctor to check how baby was positioned as that would decide what type of c-section I would have whether it be horizontal or vertical. Thankfully our boy was head down so I was able to have a horizontal section. It was light relief to be honest, I wasn’t that fussed, I’d do what I had to do because baby needed out.
I walked down to theatre. It’s blurry, I remember flashes of it and that’s it. I remember someone holding my gown together at the back, because I was incapable with cannulas in both hands attached to goodness knows what! I think I was only with one midwife, I can’t remember her name, but she was just so lovely and had the most calming, reassuring voice! Maybe there was more people, I don’t know, but I’m sure she wouldn’t have managed all my attachments herself. 
I hadn’t yet cried properly, I’d had some lip wobbles and a few tears, I think if I’m completely honest, I was scared to let go because once those floodgates opened, they wouldn’t stop. 
They opened. 

Walking into that room was the most terrifying thing ever. I’ve always been a little scared of vast open spaces. And to me that is what the theatre felt like. Everyone was getting stuff ready around the table that was situated in the middle of a Holyhead operating theatre. I sat on the bed and was asked to hug a pillow and roll forward. It was then, right then I burst into tears. I also realised that every last part of my body was shaking uncontrollably! I remembered my c section with Alfie, all the family were at the hospital, Day looked completely ridiculous in his scrubs, and my biggest worry was that my friend’s dad was the anaesthetist and he was going to see my bum-cheeks through my bottom-bearing gown. He reassured me the whole way through and I was so glad to have someone I knew and trusted in theatre with me. I’d have given anything for those trivial worries now.
This time there was no one there I knew.
Not one familiar face. It took a long time to calm me down enough to give me the epidural, all I could think about was calming myself down as I didn’t know if this delay would be harming baby. I had to pull myself together!!! 
After the epidural I lay down on the bed and waited. There were lots of voices and lots of check-lists happening.
I looked around the room and realised that not one voice was male. Everyone in the room with me was female! Except when the neonatal doctor came in. Total of one male! I don’t know I just found this strange! It had been heavily weighted the other way during Alfie’s birth. The amazing midwife described to me what it would be like and that the neonatal team would be working on baby and I would see lots of their backs! 
The midwife took my phone in for me and she and he anaesthetist talked to me throughout to keep me calm. 
At 13.57 our boy was born. He didn’t make a sound. Silence filled the room. I was honestly expecting the worst. He was brought over to the neonatal team and they began working on him. The midwife went over and look some photos for me and brought them to show me. He was alive and frighting! What a boy! After the doctors had intubated him to help him with his breathing, they brought him over to be and I kissed my fingers and stroked his face before he was whisked off to the neonatal intensive care. 
All I wanted to do was to be with him! To help him fight this fight. But at that moment I was otherwise engaged. Too busy being sewn back together like a rip in a pair of jeans. I began to feel awful, a mumbled voice in the distance said something about me having lost blood. A bag of blood appeared, my own apparently, it was cleaned then put back in via a cannula. I had to wait in theatre till this was done, and they had finished with the situation beyond the curtain. 
I was then slid from the table to a bed. A nurse lifted my head so I could sit up. Immediately I went dizzy everything began to go speckly-black around the edges, someone realised this and lay me back down flat. I don’t know if it was from the operation, lack of blood or the fact my legs were numb and when I was placed in a sitting position I felt I had no legs and I was going to carry on falling forward off the edge of the earth. Or a combination of all of them. I went into recovery and looked at my phone, Day had tried to phone and it was then I realised I had been in theatre over 2 and a half hours. 
I had a couple of missed calls from Day, I phoned him immediately and garbled my way through the conversation. My body was exhausted and was shutting down I needed rest. I needed rest so I could get to my boy’s bedside. 
I slept on and off, I woke at sporadic intervals because I was thirsty and I was desperate to know if there was any news on our boy! 
The news while I was still in recovery was, “they’re still working on him!”
After everything that’s all I could hope for right now.
Back in the room at the delivery award sometime later (time was now a mystery).

Day arrived and said I sounded much brighter than earlier! I did feel better. I felt a little giddy almost! Our boy was here, he was fighting. He wasn’t the ‘miscarriage’ he was expected to be by those doctors, he was making his mark. Around 6.30pm we were given the news he had been stabilised, the incredible neonatal team worked on him for 4 and a half hours just to get him to that point. 
We had deliberated over many names in early pregnancy, but nothing had been mentioned since our 20 week scan, too scared to even contemplate the future. 
Day had always liked ‘Arlo’ from The Good Dinosaur. I wasn’t so keen. But now it fitted. 
Arlo (pronounced AR-loh) is a given name for males. There are several origins of the name. From Old English, it is believed to be derived from the Anglo-Saxon here ‘army, fortified, troops; war-‘ and hlaw ‘mound, cairn, hill,’ thereby meaning ‘fortified hill.’ 

(Copied from Wikipedia.) 

And Arthur after my Granda, a true gentleman, as strong as an ox but with the purest heart. And the prankster who always played tricks and laughed the hardest at their outcome! Teaching 3 generations of the family how to cause chaos and have fun!

He was fighting and he was as strong as a fortified hill and our incredibly cute dinosaur who fought so hard to make his mark. With his Great-Granda’s spirit and zest for life.


💙Arlo Arthur Owen was born.💙

A rollercoaster of emotions 

A rollercoaster of emotions 
He didn’t want to and I certainly didn’t want him to, but Day returned home that night. As much as I needed him, so did Alfie and he had to go to work. It broke my heart once again, but I was too tired to dwell on anything! I needed to recharge.
The next day I was sent for a scan at the foetal medicine unit. I’d love to say I was feeling happier and more positive, but that would be untrue. I was a complete mess. The past few days had physically and emotionally drained me. While waiting in the waiting room I couldn’t stop crying! The tears constantly welled in my eyes and overflowed down my cheeks. Sometimes you are able to hide your tears away, disguise them, plaster on that fake smile. This time there was no hiding my tears. I was broken. All I wanted to be was at home. Home with Day, on the sofa watching a series on tele; home with Alfie reading him a bedtime story; home with sam the dog with his reassuring cuddles- I even missed the cat who hates my guts. 
Day understood how homesick I was, but knew the best care for baby and I was in Liverpool, where all the specialists were.

I was crying so much I actually struggled to see where I was going on the way to the scanning room. The nurse who had comforted me in the waiting room came with me for my scan. When you had a normal scan and you have your waters you are able to see your baby on the screen. Even if the doctor has to tell you, ‘oh, there’s baby’s arm, and there’s baby’s toes,’ you can squint your eyes and see. A scan with no waters isn’t like that. You cannot see what is what or at the least it’s very difficult. You cannot see baby waving and looking at the screen. I found them quite harrowing to be honest. I didn’t feel I could connect with baby through the screen as I had with Alfie. I know other women who have experienced pprom managed to stay so upbeat throughout their scans, but I didn’t. I really struggled with them. It’s a horrible feeling to feel so disconnected, but I did! And because of that the tears welled up in my eyes and overflowed to a dangerous level once again. At least I was in hospital should I need to be on a drip for dehydration!! 
Eventually, I did manage to calm myself down, reasoning with myself that this was best for all of us as a family. Another early night did me the world of good. I was back and ready for battle, although, I lived on my nerves for the next week. Closing my eyes and praying as hard as I could, which is not something I’ve ever done but it’s worth a shot. I didn’t fancy a stay in labour and deliver anytime soon as I was sure our luck was running out! 
As it will become clear along arlos blog journey, when you’re in situations like this, you meet many other people in situations like yours, but no two stories are the same.
I met a lady on the ward, we had passed each other and smiled a few times before we spoke. She was pregnant with twins. The twins had twin to twin transfusion syndrome. She had been to London and had laser treatment which had worked. But her labour had started, she was admitted and they had managed to stop it, but were keeping her in for a few days for observation. Just having someone to talk to was fantastic. A face to face conversation with another actual person! Don’t get me wrong, the midwives were pleasant, but didn’t have the time to chat. We must have stood in the corridor for over an hour. It was so refreshing! Don’t ask me her name. I don’t know it. I don’t think I needed to know her name, nor did she need to know mine. We were there for each other in the moment when we both had our struggles and were both alone. I never saw her on the labour ward again, we never crossed paths in the neonatal unit, we did meet one more time… but that’s for a later blog. I wonder about things like this, chance encounters. They’re strange, they really are. 
My mum and dad came to visit on the Monday and I was due for another scan. As you know I was terrified of scans. I was constantly waiting to be told the next thing that had gone wrong. Even though our baby didn’t look like they should in the scans, squashed and unable to make out any features, it was our baby and as difficult as I found them, it was a chance for them to show us they were still going strong. 
I left my mum and dad in the waiting room and went in and lay on the table. I so badly wanted my mum and dad in with me, but I wanted to protect them from what was being said. Stupid I know, but when you’ve jumped one lot of bad news to the next you almost become able to filter it. Our baby was alive and kicking on the screen and that was what we held on to. The foetal medicine specialist checked the baby over and was happy with their progress. She also gave a definitive baseline for delivery based on baby now. 
I asked her to bring my mum and dad in. The reason I did this is because I wanted to share their grandchild with them. With loving so far away and with the scare we had the previous week, I wanted them to see him and meet him. It was through a screen, but it was an introduction. I then asked the question we had been wanting to know for the past 6 weeks. Pink or blue? 
Pink or blue!! Remembering when that was the most important question we had to ask stung with venom. 
Pink or blue? 
It was blue! Another boy! Alfie would be happy! He didn’t want a girl. But he wouldn’t be sharing his toys and his little brother wasn’t allowed in his room! 
 After meeting the grandparents, baby’s heart tracings were great! They had picked up from last week and on Tuesday were the best they had been. I felt so hopeful that we could push on as far into the pregnancy as possible. 
But if we’ve learned anything about our baby so far, it’s that he certainly likes to prove people wrong. 
Waking up after a good nights sleep I was greeted with my cup of tea and the CTG monitor. Some midwives were on the ball and liked to get the monitoring done before the doctor’s rounds. 

 

After my breakfast I lay there on the monitor and spoke to Alfie and Day on FaceTime. 

Cautiously, this time however I had one eye on them and one one the monitor. I knew by now how to read these things. I knew what they were looking for. I knew the baseline that was acceptable. This was not. Usually left in a room (after being checked on once) to ring the bell when the monitoring was finished, this time was different. My bedside was a hive of activity. I said to Day on FaceTime, “I think he’s going to be delivered today. He is not happy and neither are the doctors.” 

… 

The labour (without delivery) ward

Labour without delivery ward
Having visitors to the hospital was amazing. The phone calls from family and friends, the messages too. They kept me sane!
My mum and dad and Day’s mum visited a couple of times. It was so exciting when you got a visitor or two! Especially when there you knew there was almost nobody that would be able to ‘drop by’ on their way in from work. It made the trips by boat or plane that people made even more special! 
On a couple of occasions I was able to venture out with them for lunch, but to be honest I usually put them off because I was so scared. Too scared to leave the safety of the hospital for fear of what may happen to the baby. Usually the hospital cafe was as far as I felt comfortable going. This was after my first venture out with Day. We went to the cinema and to Nando’s for lunch. They weren’t far and I was sitting for the most part. While I was out I knew I was leaking/bleeding and it terrified me. I just wanted to click my fingers and be back at the hospital! So, the hospital cafe it was. 
My incredible friends and family came to visit me. Day came over every single weekend. As awful as it was for me being stuck in hospital, Day had to keep everything running at home and as normal as possible for Alfie. I honestly don’t know how he did it! I’d have been a nightmare. So Stressed and worried I don’t know how I would have coped! He never showed it to me and kept me calm when I would ring him in floods of tears telling him I wanted to come home. My absolute rock. 
The thing was, I felt completely fine, it was the little person inside of the that wasn’t and that was worse, because if you feel ill yourself you know when to stop or slow down. So instead, I was just terrified of everything. I was aware that the situation of Pprom could make me sick at any point too, as the risk of developing infection was high. My bloods were done every Monday and Thursday to check my crp levels and were repeated if doctors had any concerns. 
I had received the first dose of steroids on Monday night and the second in the Tuesday morning. This meant I was awake throughout the night testing my blood sugar!
 On Tuesday I was allowed out for a couple of hours with Day’s mum. We went for lunch in Liverpool and the day passed pretty quickly. It always did when spent with a friendly face. Overnight on Tuesday, they weren’t happy with the short term variability of the baby’s heart rate. This meant I had been up at midnight, 3am and 6am for repeat monitoring. The midwives weren’t overly concerned but the doctors had asked for them to be repeated. It meant for a long, long night of ‘criteria not met.’ By the time one monitoring session was finished, another one was due to start. You know it’s not the case, but sometimes you can’t help but wonder if the midwives who are in overnight forget that it is nightime! It’s a question that furiously shot across my mind many times. They were keeping an eye on baby which was amazing, I’m just THE grumpiest person (aside from Day) if I don’t get enough sleep. 
 The tracings improved slightly by the morning. 
But by Wednesday I was absolutely exhausted. Even though I spent my day in a room with a bed, and I did rest throughout the day, I couldn’t wait for night to come so I could settle down properly. 
On their rounds the doctors said they weren’t sure but they thought the steroids may have made baby ‘sluggish’ so I would be monitored at intervals throughout the day. I was hopeful that things would pick up so I was able to stay quite calm. Things had improved and would continue to, wouldn’t they? 
A short sharp NO would be the answer to that. Baby was not happy. I was monitored continuously from 10pm to 2am on the maternity base. Nothing was getting any worse, but there wasn’t any signs of improvement either. It was decided at 2.15 am that I was off to labour and delivery. We were to be monitored there, if things started to deteriorate, baby would be delivered. Here they have the screens with all the monitoring on at the main desk and in the doctors office, so there is always someone there keeping an eye on the tracings. 
Now I was scared. I was 26 weeks pregnant and they were talking about deliveries and emergency c sections. In a hospital, alone, and having to put full faith in the medical staff.
There was some discussion about at what point they would deliver, because baby was so young still and because of this, what level was acceptable. And no decision was made really. Unless things deteriorated baby would stay inside. 
Hooked up to monitors in labour and delivery was strange. This was the room I’d been staying in, my room. It was too big, too clinical, too prepared. Sounds stupid as it’s a hospital room, but I didn’t feel I should be sleeping in there, waiting. It felt like trying to sleep on an operating table. Agoraphobic is how I felt, far too much space surrounding me to feel cosy and comfortable, I felt completely exposed. 
I don’t think I slept for more than 5 minutes at a time, constantly drifting in and out of sleep. So uncomfortable, trying to sleep on your back with monitors strapped to your stomach, listening in for anything that sounded abnormal, any change to the rhythmical, ‘whomp, whomp, whomp’ of the heartbeat. Cannulas sticking out of each hand in preparation for being swept down to theatre at a moments notice for an emergency c section.  I’d phoned Day, so I guess he was probably doing exactly the same thing at home waiting for those helpless seconds to tick by until he could get on the plane. He wouldn’t be in discomfort, but I wouldn’t want to swap places with him either, lying there so far away feeling helpless. 
Different doctors dipped in and out, the midwifery staff were lovely and so thorough. 
One doctor came in to talk to me, who was also diabetic. She told me her story of diagnosis; she accidentally diagnosed herself while herself and her friends played with blood glucose testing machines while training. Her friends were between 5 and 7. Hers was above 20! She told me of her getting her pump as I showed her my wireless one, she was jealous of it because it would have saved her the embarrassment when things got a little heated with a guy she had met, as he took her bra off her pump fell from her bra and dangled in the most unflattering fashion in between her legs!! 
I remember thinking how I would love to speak more to thins doctor if only my eyes would stay open. After our conversation I did manage to get some sleep, whether it was because it was a conversation about something else, baby’s heartbeat had remained stable because I’d spoken to Day and he would be with me as soon as he could, pure exhaustion or a combination of everything, but I slept. 
By this time it was morning. At 10am it was decided that it didn’t look like I would be going for an emergency c section, and even if I was they decided it was better to feed me. Probably, officially because it was better I ate to keep my sugar stable, but also because they’d deprived me of sleep AND food and I was probably a horrible, emotional wreck of a person who had cried at them many, many times. After I ate the took me off the monitor for a couple of hours to let me get some sleep. 
I’d been disturbed by two hushed voices entering the room, no one came to poke and prod me and to be honest my eyes were to heavy to open. As I dragged my eyes open and took off my eye mask, I knew I wasn’t alone in the room. It was different this time. Not a doctor, nor a midwife, a lot more familiar, a feeling that felt like home. It was strange how the feeling was in the air before I had even awoken fully. Looking to my left, and there on the floor, snoring softly was Day. 
The room no longer felt so clinical and cold, it felt warmer and more inviting because I wasn’t alone anymore. Day was right by my side. Happy tears rolled down my cheeks, that feeling of familiarity is what I’d been missing. A midwife entered and asked if she should get a camp-bed for Day. I told her to leave him while he was asleep as that boy could sleep on a clothes line if he was tired enough!!
Don’t ask me about timescales, I haven’t much of a clue. But sometime during the course of that day a doctors posse entered and the decision was made that baby was, at the point, better inside for as long as possible. But that I should be monitored even closer and a definitive decision needed to be made by foetal medicine about the baseline for delivery. 
For now though, we were given the all-clear to fight another day. We were back ‘home’ in the safe comfort of our hospital room. If begged and pleaded for my monitoring to be done earlier, so that if they were unhappy a repeat could be done earlier in the night as I don’t think I’d cope with another night of no sleep. They had brief guidance from foetal medicine as to what was acceptable but a confirmation of this would happen the next day at my scan. 
The doctor had written in my notes, ‘monitoring before 7pm’ and sure enough this was done and before 7.30pm, I was asleep. 
This was a hard day, hard, hard work. Some might call it ‘labour,’ thankfully this time without the delivery!! 

One in, all in!

One in, all in! 
I was awoken by my friendly alarm clock/tea lady at 8am on a Monday morning. The start of my second week in hospital. I was in a new, bigger room, with my very own tele that had pride of place on the wall. It didn’t work, but it looked pretty. Day had fought for a bigger room for me. He was staying at the hospital when he came over to stay and we both had black and blue shins from crashing into beds and chairs. I, myself, wasn’t cheeky enough to ask, not wanting to make a fuss, but I was so glad he did. He was right, we were hopefully in for the long haul a bit of space was needed. It was so much more comfortable. 

During ‘This Morning,’ I heard mumblings outside the wooden door. There was a sharp rapping at the door and in entered the doctor and his entourage. This doctor was younger, fresher faced, but had a furrowed brow. I instantly tensed. Someone else that was going to tell me all the bad things that could possibly happen to me and my baby. I was waiting for it. My body tense with that primal instinct; fight or flight. I was ready to fight all over again. Ready to be the advocate for my baby. Come on then. I was armed with my pad and pen, even though all the questions I needed has been rehearsed over and over in my head. 
I’m ready for this battle. At that moment, without Day, it was just me. Me vs the faces in front of me.

“Sorry Miss Ward, I’m just trying to understand why you weren’t given steroids on admission to the hospital…” 

No, I’m sorry… what? 

I was winded and stunned. I felt for a brief moment I could cry with relief! 

“…my plan is for you to be given steroids right away to help mature your baby’s lungs and give them the best chance of survival. They’re given 12 hours apart. I know you are diabetic, it can make your sugars hard to control…”

“I’ll do anything, I’ve already spoken to my diabetes nurse about what to do. I can phone her and get advice.” 

He explained about their diabetes team at The Royal and that I could get their generic advice. 

I explained in a very nice way that his offer was nice, but I’d be contacting my own incredible diabetes nurse from the Isle of Man. I’d trusted her with my life for many years. She supported me through my first pregnancy and through the planning of this one right up until I came to Liverpool. (As well as the rest of the time!) She knows me and my diabetes. I’d be contacting her and taking her tailored advice. 

He smiled and agreed. And told me I would get my first dose of steroids at 7pm! 
I couldn’t believe it! A fresh face and some fresh hope! All I had wanted, begged and pleaded for. Excited, bouncing and giddy, I phoned Day. Ecstatic about the plan moving forward. Who’d have thought you could get so excited about having a needle jabbed in each butt cheek, hey? 

I had had a big leak and bleed a few days before, he wanted to give me an internal examination. One of the midwives thought the baby may have been showing signs of distress through possible meconium in my leaked waters. I’d read my information and internals weren’t advised unless necessary. If baby was in distress they needed to know. The doctor didn’t think it was the baby showing distress, but he wanted to be sure. 

Was it ok of the student doctors had a look too? They’d never seen a lady with no waters before. At least they’d buttered me up with the offer of steroids first! Dinner and a movie would have been preferable, under usual circumstances to be honest. 
I did laugh inwardly whilst thinking,”sure! Why not?” Dignity was a long, distant memory anyway! One in, all in!

 “Could you just shine the torch a little to the left…. if you look there…” 

It’s strange where you can put yourself when you’re in the most undignified of situations! I glanced over at my pencils and crayons strewn creatively over the little table. Amongst the creative chaos, I caught sight of a pencil my mum’s friend had brought me. I had asked for a rubber because I had started drawing (badly) as well as colouring. Mum’s friend had given the pencil with a rubber on the end to my mum to give to me, with the tagline, “bit bloody late for rubbers now!” 

I joke, but I had a serious message. I did want to raise awareness of Pprom. If I could make this journey smoother for any parents in the future, to have two passionate, proactive doctors like the one who walked into my room that morning, that believed in Pprom babies having a chance, then my job was done. 

All was ok, the doctor was happy it was from the earlier bleed.

One doctor. One doctor was all it took to change my treatment and give us the chance of being parents to two living children. I often think of this doctor and his proactive care. He didn’t know if my child was going to survive or not, but he chose to give him/her the best chance possible. What he didn’t wouldn’t harm either of us, it would help our baby’s lungs to mature. 

There were six trainees. Six. If they went to work in six different hospitals, imagine how the treatment for Pprom would improve 

This should be standard practice in the treatment of Pprom. 

The steroids were given. They did play havoc with my sugars, but the plan we had in place worked. The only other side effect was severe beetrootitus and a smoking hot body to the touch all over! But they did their job on the inside, working where they needed to, strengthening and maturing baby’s lungs should they be born early. 

That second stinging injection to the butt brought tears to my eyes for more than one reason. 

Photo of beetrootirus!