A Fathers story: Nicu survivor, prematurity, loss, and covid

It's been a while since I have wrote a post, not because I haven't wanted to, but things get in the way.  My phone lock screen is a picture of Oliver, so I see him everyday and I think about him every day. Not that I have ever not thought about Oliver, but I am even more so with his 3rd birthday fast approaching. Allot of thoughts go through my mind, mostly why did this happen, why did it have to happen, and what can I do to honour his memory. I finally got back into kickboxing after a good half a year off and it's exactly what I needed. I started going to kickboxing after Oliver passed, it was a way for me to be able to express my anger and guilt, also to just relive built up furtsration.  I spoke to myself in the gym last night when I hit that wall, where the idea of one more push up was one to far. I though how my boy faught like a warrior, a champion and if he could show such strength and resilience then why couldn't I do the same. I pushed because he did, and how I

So I think today is probably a good day to talk about Oliver's funeral, as it was this time last year 8th September 2020 that we gave our final goodbye. To think its been a whole year since we done this, just seems unbelievable how fast time has gone. I remember on the morning of his funeral I didn't realy feel sad, I mean I wasn't happy, but I wasn't sad. I think it's because I had already said my goodbyes, and this was just another.  I did however feel pressure, the pressure was from the fact I felt I had to be strong, for me and for every one else. I thought if I break every one will break, so I just kept a stiff upper lip I guess. As the little limousine arrived with olivers little casket in the back, I remember Frances just being frozen in the kitchen, then it hit me. This was it, this was the final time anything regarding Oliver was going to happen again, in the sence of him being physically here. Up until this point we spoke as if Oliver was here, but after t

After the loss of Oliver and in the previous blogs, you all know that he was due to come to the Demelza hospice. Well Oliver arrived there the day after he passed, and we received the phone call that morning saying we could go and see him.  Apprehensive I wasn't sure if I wanted to go and see Oliver, the thoughts crossed my mind, would he look the same as when I left him in hospital, and what would be different. It was the unknown that made me extremely anxious, and I did speak to Frances about this.  I had, had this perfect image of him not only the day before of him so peaceful and calm looking that I didn't want to poison that image with another one that wouldn't look the same. I didn't even know if I wanted family to go and see him, I didn't want my son to be a show thing to just go and see, but at the same time they were his family and had the right to pay respects. In a brief conversation myself and Frances decided that family could come and see Oliver one las

18th August: Going home. Where to start, we'll driving home after saying goodbye to Oliver there was just this sence of numbness. There was this cloud of negativity hovering over us all, its as if we wanted to talk about what just happened, but we also didn't.  Emotions where very high to say the least, I remember just updating my Facebook post to let everyone who had been such a support network to me know the sad news. I guess this was my way of proccesing it, throughout Oliver being alive I always updated Facebook to keep people posted, so thats what I done. The first moments home just didn't feel completely right. We got through the door and took up our suit cases, and then just looked at eachother. Nothing was said, but I gave Frances a big cuddle and then we went downstairs. I belive I had something strong to drink just to ease myself, Frances just sat on her phone, probably to just take her mind of everything that had just happened.  The whole day was just trying to f

So, I have been putting this one of for sometime now, waiting for the right moment to take the time to write it. It's taken me a good few attempts to do parts, and then to come back and add more over the last few days. However I have come to Finnish it, and although this is the end of olivers story, it's not the end of his legacy. Olivers story has radiated with so many, and in some future blogs you will see how loosing a child has effected myself and family, but how oliver has influenced good and charitable work. Please read this with caution and please leave feedback, this has been hard to Finnish, but worth it for me. It has brought me to tears, but most of all its brought me clarity and a weight feels like its been lifted, this has been an amazing way to deal with my bereavement, and I highly recommend this as a way to help manage the loss of a child. Nothing really seemed real at this point, it was like you were doing something that every cell in your body was against. The

17th August: The day before. After an exhausting and emotionally draining weekend, with highs of family visiting and lows of knowing why they where there, myself and Frances where completely drained.  This was going to be our final full day with Oliver and we knew it, but most of all we felt it. The struggle to find any sence of happiness was overwhelmed by the sadness of knowing that tomorrow we will be saying goodbye to our son.  Making our way into the hospital together was undescribable. For us this was out of the ordinary, not so unordinary for couples outside of covid, but we had never been able to see Oliver together unless it was bad news. Although the situation was an averwhelmingly sad situation, for us this was the first time together we got to spend the whole day with our son and that was special to us. We had a professional photographer come and take some lovely photos of us, and as nice as this was I couldn't help but think soon this is all we will have, j

15th August: After the meetings and the desicion to move forward with paletive care, things moved fairly fast. I made my feelings rather clear that if it was going to happen then it needed to happen within the next few days. The reason for this was because it would have been torture on us to prolong oliver, knowing what we know. Do I regret rushing it, yes, yes I do, but I know why I felt like I had to and as above, it would have been so hard on us knowing at some point we would have to decide when olivers time was up. In my mind the faster the better as not to prolong the pain and the burden of seeing him in the position he was in, or to extend our pain of loosing our son. (Hope that makes sence) But it is something that I think about allot, what if we had waited another week, we could have had more time, more cuddles, but that would have been greedy. To hold onto him for another week or so would have been nice, but realisticly it was time. On the 15th we got a special little room, in

12th August: The Meeting. I'm not really sure how to start this blog as it's going to be one of the hardest ones I have had to do. Being so close to the end of olivers story is difficult in itself, but there's a few more blogs before it is complete. I'm going to start this of with a picture. Myself and Frances hardly slept a wink knowing we had a meeting for Oliver, we also didn't know what the meeting was for, and that didn't help. Waking up on the 12th August, deprived of sleep and feeling all sorts of emotions, stress, anxiety and just downright sad, we left for the hospital. On the way to the meeting me and Frances discussed what the meeting could be about. What if they was giving us an end date he could go home or what if they had solved his airway dilemma, just some of the theories we had. We also had the theories that we didn't want to think about, what if he needed more surgery, what if he was going to be in there for a longer time than e

5th August: Things were getting ontop of us by now, the stress and anxiety had reached an uncomfortable level. Still fighting olivers battle, but by now we were fighting our own battles. Exhaustion, depression and fear where an everyday occurance. I remember Frances texting me on this day, saying she just needed to be alone. She said she wasn't OK and she was worried about Oliver. She decided to take herself out for a drive to clear her head, and if that's what she needed to do then that's what she needed to do. Her mum asked her to come home and talk about it, I even asked her to talk about it, but she wanted to be alone. As hard as that was to deal with because we all wanted to be there to help her, it was just something you have to go through, Lord knows I have since needed some time on my own. Further on in the day tho we got a picture of olivers belly, it looked so much better. At the time we knew we Still had a long time to wait for it to be fully healed, and to get h

31st July: By now things were still up and down, everything that had been a problem was either on its way to being better or throwing us new problem's. Oliver didn't seem to be to fussed tho, weather it was the morphine or he was just relaxed, he would just lay there content. By now he had, had so many blood transfusion to date I had lost count, but he was having one this day when I came in. Sitting with Oliver was one of the best feelings in the world, but you was always weary of what was going to be next. There was always this looming sence of anytime something bad can happen. An unhealthy mix of stress and anxiety in this situation was always with me. The nurse came over to me while I was sitting with Oliver and she explained that he will be needing a routine surgery to input a new line. (Broviac line) (A Broviac is a type of central line that allows for long-term access to blood. There is an entry site where the catheter enters the blood vessel and an exit site

27th July: The air way Today was the day Oliver was going to have a camera down his throat, this was to see if there was any obstacles that effected his breathing. By now all sense of positivity was almost diminished, what and why is he having problems breathing were questions that needed answering, even the nurses didn't know, hence the camera. The results came back and they had found, when the breathing tube is removed olivers airway was floppy and this would cause it to collapse on its self. Due to his airway collapsing the airway was obstructed causing olivers body to litteraly suffocate itself. I was told that they were going to have a very indepth meeting around Oliver to discus his options. For now tho they had all agreed for him to have steroids injected into his neck to strengthen his muscles in that area. 28th July: No change, Oliver had another eye test today just to see if his stage 2 ROP had got any worse, turns out it looked as tho it may be progressing. T

21st June: This is only going to be a short blog post as this is the calm before the storm so to speak. Oliver was scheduled for another eye test, this was to see if there have been anymore deterioration in his eyes. Going back from the 16th June with the suspected stage 2 ROP, it was likely Oliver would need some sort of intervention from the doctors. This could be laser eye treatment or something else. Not overly concerned as it was a routine procedure if this was the case, but just the thoughts of poking him about and anything to do with eyes to be honest makes my belly feel funny. Anyway the docs were going to discuss options and let me know. 22nd July: Funny video of mouth care. Sometimes Oliver was just so funny in the way he reacted to certain things, such as the mouth care. I remember having joke with the nurse and telling Oliver, just you wait till you try some chocolate or sweets.  Oliver had only ever had little bits of breast milk around his mouth and dabbed onto his tongue

9th July: so this day was filled with more eye tests, as explained I couldn't stand these. They were so invasive and it just made me squeamish, luckily it didn't take long and nothing was of concern so far. Also today was the day he was getting his first physiotherapy session. Due to the fact that Oliver had been on morphine and other drugs for so long, he had not moved around much, this caused his muscles to deteriorate. The physiotherapy was there to help him get into shape so to speak. The other reason for needing the physiotherapy was because of the hole in his brain. As mentioned the hole in his brain could have some effect on his mobility, so this was to assist and get an idea on what severity we were looking at. Turns out Oliver had good strength in his arms, probably because he was always moving these. They did find his leg muscles where a bit tight, but this was to be expected. Oliver was getting fighting fit, and these physiotherapy sessions were going to

8th July: where to begin, this was just a shit day to be honest, and another hurdle in the way. Let's start with a nice picture though. As you can see mum got to hold him again, if my memory serves me correctly this is only the 3rd time in his life to be held, by mum that is. God knows we needed these days, as parents not being able to hold your own flesh and blood is unbearable, but I have already gone into this on previous posts. Lets get on with the news of the day, so July the 8th. As usual the surgeons had come about and done their daily walk about. This was always a scary, but hopfull moment. You didn't know what news you was going to get. For us it was always not so good, but we always held on for hope.  It was handed over that there was reduced leakage from his bowel, this was good news, but it didn't mean we was out of the woods, the looming thought of surgery wasn't very far from my mind. So it seemed that the bowel had attached itself to the stoma

⚠️⚠️⚠️ sensitive image below ⚠️⚠️⚠️ 6th July: Just about mentally exhausted with the recent news and images over the last few days, came the 6th July. Everytime going into the hospital, weather it was me or frances, we just expected nothing positive.  To have that going round your brain constantly takes so much away from being able to think strait.  So happens it turns out that this day was nothing different.  There was news that Oliver had poo/secretions leaking from his bowel and onto his wound. This meant a number of things, most of them worrying.  1) will he need another operation on top of his others. 2) what's this going to do regarding his infections.  And many more questions that had now been left open. The ok news in this pit of bad was all the stitches were still in place so the wound itself was alright, but with this happening it meant the leak was happening somewhere else in his bowel. The action plan what they came up with was to leave it alone. The hope was, it was a