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

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 if go

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 into our bra

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 "Oliver

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 start up

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