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

28th May: This was a day filled with mixed emotions, good and bad.  Mum went in to visit today, I know this as this is when she got to do something she had only dreamed of doing, and I for that matter, but we will get to that part soon. So as the day goes, a usual visit as planed expecting this to be the day we finaly get the boy sorted, well we was wrong. The scheduled pda oppreation for today was canceled for the hundredth time, tbh I had lost count with how many times it was scheduled and then cancelled. You guessed it right, another infection ! Insert pic (I don't even think I need to say how powerful this picture is, it speaks for itself.) Hearing frances tell me over the phone that it wasn't happening, was out of this world frustrating.  All we wanted was for this surgery to take place so he could recover and progress. I felt like I was letting my son down, I don't know why I felt like that but I did. Should I have asked more questions, should I have made ...

P.s my proof reader has got a new job, (selfish I know lol) so what you're reading from now on is my poor attempt at literature and grammar. 23rd May: This is where it gets a bit tricky in terms of remembering who visited Oliver on cirtain days. This is because somedays I would be in then frances would be in, sometimes 2-3 days in a row if I was working. So I'm just going to write it from how I felt/reacted to the news and events that unfold. Anyway on the 23rd May, we got word that Oliver's right lung had collapsed. I'm sure I don't need to explain how bad and frightening this was. This is something that had happend to him before, but with recent events, such as infections and water retention ect outlined in my last blog, this was more serious. Not to mention he was also on the highest oxygen levels and the high frequency ventilator still. (Also another blood transfusion) Insert pic Round in circles.......  Still on the 23rd of May we also g...

This is a digression that I didn't intent to write; I just felt I needed to. It's been 8 months since my son passed, and in them 8 months it's been a hell of a ride. (As you will soon read in upcoming posts) It's the 15th of May 2021, just lying here in bed, and at the moment my life is stable to a degree, not perfect or how I imagined it, but it's good. Then all of a sudden, out of no where this wave of guilt, panic and anxiety just passes over me, and I felt the need to look at pictures of Oliver. This always ends in one of 2 ways, one I cheer myself up, or two I make myself feel worse untill I fall asleep. Tonight tho I just feel I need to type, so here I am. I'm not overly sad; neither am I joyful. I should be as I have a fantastic daughter and many other things going good for me now, but it's hard to always see the positive. The ball in the box is a fantastic way to describe things at the moment, and for me, tonight it's hit. Everything ...

19th may: After a long and gruelling wait, the time finally came and we got the news that Oliver was booked in and ready to go for his pda operation. At this point, the date still needed to be confirmed, but he was booked in and a bed had his name on it.  Unfortunately, it was hard to get excited as we had already been told time and time again he wasn’t going to go. Furthermore, it’s hard to get excited about your child having an operation. As much as we wanted to get this done for his sake, the thoughts and panic soon overtake your mind.  We received this vcreate image with the following message. After visiting Oliver, and still no specific time or day given as to when he would be leaving, I just sat with him talking about life really. The good news is that he was free of infection, and he was also carrying less water retention. Speaking with the nurses they were hopeful that he would be going very, very soon.  After leaving that day feeling happy Oliver was doing well a...

11th May: The day was a nice day and being in the middle of May the weather was sunny; there were still days of drizzle, but not on this day. Similar to all the days before, I left Frances waiting in the car and walked into the hospital. Scrubbing up and walking next to the incubator, I couldn't believe what I was seeing. I thought to myself, “I must be at the wrong incubator, they must have moved my son to another place”, the baby in the incubator looked nothing like my son. To my surprise it was my son, but he was so fat and filled out… Michelin baby came to mind. I spoke to the nurse because I didn't know what was wrong or what was happening. A few thoughts went through mind, “could it be his infection, I thought it was gone now?”. It turns out that he was in fact still fighting his infection, although it was minor, it still slowed his progress. He was due to come off the antibiotics in the next day or so. The reason he looked like Michelin baby was due to major ...

1st May: I can't remember who went to see Oliver this day, but I can speak for the both of us when I say we were disheartened. The next thing to overcome was getting his pda duct sorted, and without getting this sorted, he was at a sort of standstill. As stated in my previous blog post, he was scheduled to go on the 1st of May for the surgery. Oliver was booked into London st Thomas's Eveliena, but unfortunately, they didn't have any space for him at this time. It's an unusual feeling, holding onto the hope that a space would become available, all the while just sitting and waiting with him for something to go wrong. Because that's what you are doing really, you know you're not going to get the news “you can go home tomorrow”. So, what do you do? You sit there waiting for them to tell you something else has gone wrong. A few days later on the 3rd of May, he was booked in to go and have his pda duct surgery. Apprehensive and scared, we awaited the phone call to s...

It's been a while since I have posted anything; trying to get into the correct head space to write isn't always easy. Since my last post, Oliver’s birthday has been and gone, and although we managed to have great success with collecting donations, it has been a hard time. Moving on with this digression, I am pleased to say the donations went down a treat with the staff, families, and of course, the babies at the nicu ward. I am pleased to say all our hard work and donations went down a treat. Every single item donated is being used, some are going towards the Easter bags, others are going towards upcoming events, and some are being used as we speak. When speaking with Trina the charity PR Officer and asking how the donations went down, this is the response I received.  “OMG Ethan like you can't believe. A lot of very happy nurses. We had 17 babies in yesterday and I was able to use the nappies, cotton wall balls, books and a couple of blankets to make up their Easte...

Some days, and maybe even a week at a time may be skipped in this blog. As previously mentioned, this will be due to the fact that on these days everything remained the same and there was no significant news to report. Additionally, we were only allocated a 2-hour time slot to visit Oliver and we weren’t allowed our mobile phones out due to Covid-19 and the risk of cross-contamination, so this made it difficult to get photos.  Let's start with the 21st April: vCreate was started around this time; for those that don't know, vCreate is like a video link to your baby. The nurses take photos and videos and upload them so parents can see them from home (Taken from vCreate) “Good evening Mummy and Daddy, I hope you’re ok. My nurse looking after me today is called Lauren and she said I've been a very good boy and had a good day- I have had my blood pressure medicine stopped this morning, and my oxygen requirement on the ventilator has been between 28-30%. Looking forward to se...

19th April  Today was a good day. (I know we have skipped a day, and this will happen from time to time). On these days there probably wasn't any news, neither was there any change; or significant changes should I say. So, the 19th April I went in to see Oliver and I was feeling scared as always. Given what the last few weeks had thrown at me, I was surprised to even wake up in the morning with energy. Little did I know that this day was going to be a very good day.  As I made my way into the hospital, accustomed to the routines and very much a regular face, I said hello as always. I always made my appreciation known.  Walking up to the side of his incubator, I was once again faced with the stark reality of how unwell my child was. Up until now, it's always been bad news that I’ve written about in my blog posts with the exception of the time he managed 12hrs on bubble cpap. As my other post had said, this was the only progression we had seen to date. Oliver had this habit...

This is going to be a hard one to write; it's Olivers 1st birthday tomorrow. Knowing I have started this blog has helped me in so many ways. Firstly, because i like to talk about my son, and secondly, I have found this a good way to remember him and get it all out.  Tomorrow is going to be hard for many reasons, as I’m sure you can all imagine. The plan is for myself and Fran, also not forgeting my little Rose-bud, to meet at our local park. Rose has written Oliver a letter she wants to send to him in heaven, saying how she misses him and how she is looking after her dad. She’s also telling him how she’s getting on at school, aswell as what she’s been doing otherwise; such as kickboxing and gymnastics. If life was fair, Oliver would have been with us on this day, but life isnt fair; it doesn’t owe anything to anyone. I could feel sad and shut out the world, but what would that achieve? For Oliver’s birthday we have set up Oliver's Hampers; something to donate to medway hospital...

17th April:  After leaving Oliver on the 16th I felt somewhat satisfied but obviously still worried. Frances and I went home that night rather content. Although it was hard for us to leave him; it always was, we knew he was in the best hands.  Dosed up on morphine, I felt slightly better knowing he couldn’t feel anything. I still couldn’t shake the feeling of just wanting him to be free though. But what did free mean exactly? Free from living in pain or free from this long road ahead? I wasn’t sure, but knowing he wasn’t feeling pain put me slightly at ease. That night I slept alright, not knowing if it was due to the knowledge that he wasn’t feeling anything and was probably high as a kite, or the fact my body had caught up with my brain and I needed the rest. Anyway, fast forward to the morning, it had been planned that Frances and I would visit at our regular time, although this swiftly changed. At 8am we received a phone call from Brighton hospital. The number embedded int...

It's digression time again: This digression is very close to my heart and something I’m rather passionate about. Paternity leave for many fathers out there is only two weeks and that is nothing short of a joke. For fathers experiencing the cruel reality of NICU, 2 weeks might as well be 2 minutes. Going back to one of my previous blog posts, I believe it to be when Oliver was taken to Brighton, I touched briefly on paternity leave and when to take it. During Oliver’s first few weeks, I had thought about taking it straight away but I was in mixed minds. So many people had said to me, “why not take it when he is home?”. As I explained to them, and as I am explaining to you now, I wasn’t sure if he was ever going to be coming home. I did hold off taking it and waited up until the point he got taken to Brighton.  Convinced he wasn’t going to make it, I thought if I was to take it now, at least I would have got to spend as much time with him when it was needed. As you all know, Oliver d...

16th April:  The day after Oliver had his operation and after a well needed rest, Fran and I went back to the hospital. It was my turn to visit. Looking at oliver behind this thin bit of plastic with more wires and tubes was hard enough. But when I saw all the swelling of his stomach, the plasters, and the general look about him, that’s when I realised just how much he had already been through.  I mean the poor sod had so many canulars inserted, the only space left was his head. Personally I have never seen this and I would be happy if I didn’t see it again. In the mist of all this, sleep was hard, work was hard, trying to maintain a relationship was hard. Adding travel into the mix as well as looking after yourself is hard. But all I could think was, “well Oliver has got it worse so who am I to complain?” During my visit that day it seemed he was doing rather well. As I was sitting there peacfully looking at my son, the nurse came over and spoke to me. She went on to say "Oli...

15th April:  Frances and I had taken our regular trip to Brighton. I went with her as much as I could, even on the days I knew I wouldn’t be allowed in the hospital so long as I wasn’t working. It was always nice to be able to be there even if I couldn’t go in. I never wanted to miss out on news and I always wanted to be as supportive as I could. Frances always had to come with me as well because she was the driver. However, I’m sure she would have come with me even if I could drive. What started out as a regular visit on that day swiftly turned into a roller-coaster of emotions. Frances went into the hospital and as soon as she got up to the ward she came back down to the car, "Ethan, they want us to both go in, Oliver is not well". Feeling like I was experiencing a bad case of Déjà vu, I thought to myself “I have heard these words before”. Initially I couldn’t even get a word out of my mouth and my body started to feel numb. Then my brain went into overdrive and I thought, ...

 13th April: After the successful surgery and having all the stress and anxiety, Oliver seemed to be doing well, although there were a few minor things to consider. 1) He had developed an infection that had the nurses concerned. 2) His pda duct hadn't shut as expected (rather common in preterm babies) 3) He was on double insulin for his glucose levels, and other levels of his bloods showed inconsistencies. Going back to the aforementioned number 1) concern, it was found that an infection was growing and progressing around his surgery wound. As it progressed, he had to be put on the highest strength antibiotics available. After this, they said if the infection doesn’t respond to the antibiotics, they may have to go back in for further surgery. I remember just thinking, how much more can this boy take… turns out a lot as you will soon see!! More about concern number 2). After receiving medication to assist in the closure of his Pda duct, updates showed that the meds didn't work. ...

 I just wanted to use one blog post to talk about the support I received from the people around me. This isn’t really a crucial part of Oliver’s story, but it’s still very much relevant.  Once we got the good news from Brighton; Oliver making the surgery etc, we knew we still had to make our way down to Brighton on a daily basis. We knew that eventualy travelling such a distance would soon become a financial burden. However, we were determined that we would not let our son down and we would be there as much as we physically could. We still had the strain of knowing that eventually there was only so far my wages and Frans maternity pay could take us. A few people suggested ‘go fund me’ as they had either used it in the past, or heard about the benefits it could have. I'm not one for hand outs or charity as I do like to pay my own way, but unfortunately this was something out of my control. A few friends and family had said “well we will help if we can”, and so we decided to sta...

On Thursday the 9th April after the most restless night with little-to-no sleep, only two questions where playing through my mind.  1) Will I wake up in the morning (if I slept at all) to the news my son had passed away during surgery? 2) It's been ages why haven't we heard anything? Going back to question one… I didn't sleep, and this question is the reason why. I have been through many troubling nights in the past, but this one was definitely the worst of all. The thought of waking up to being told “we are sorry Mr Ryan, but your son has passed” only kept me awake. How can you switch off when that’s all you can think about?  I was laying there in an unfamiliar place thinking about how we’d been immersed into a world panic in which we were told we had a slim-to-none chance of Oliver making it the through night. We’d been surrounded by health care professionals, all of whom were visibly strained with empathy in their eyes. Whenever they looked or talked to you, it was unner...