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.