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

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...

8th April: This is going to be a hard one to write for me; this took my anxiety to the limit. What started out as a routine visit on the morning of the 8th soon turned into a living nightmare. I was sitting alone at my Uncle’s house. I was away from Frances as we lived at different addresses. I was just sitting there thinking about Oliver and just general things. I though I would try and relax and have a beer. No later than I had finished the first can and actualy felt some sort of relaxation, Frances called. At 8pm on a Wednesday evening Frances had got a phone call from the hospital. The call specifically asked us for both of us to attend to hospital. As soon as she hung up, she called me right away. As I layed on my bed about to have another can of beer, I answered the call from Frances. Instantly from the tone of her voice I knew something was wrong, "Ethan how soon can you get to mine?". She explained the doctors and nurses were very concerned and we needed to get there ...

Just a slight digression, but I want to talk to you about the effect of covid up until this point. This was a behind the scenes shot of how I was dressed on my visits. Below is a Facebook status I uploaded at the time; I think this pinpoints how I felt at the time. Sadly this is not a filter... this is the extremes we have to go to just to see our Son. Certainly an essential trip and a meaningful one at that. I was on my own as due to covid-19. His mum couldn’t be with me, only 1 parent could visit a day, and there was no swapping in and out. When I wasn’t at the hospital, she is, and during those times I’m working a 14hour day with vulnerable adults who can't support themselves. I’m putting myself at risk on contracting corona there, and then the day after work I'd be back at the hospital. A trip that required 3 busses and took just under 2hrs. Also, due to this I'm unable to see the mother of my child as we live in different homes. Just when we need each other...

4th of April: well this was a special day for me; things seemed to have settled and we were on a good track. From previously being worried about the blood transfusion, things were slowing down and although his haemoglobin and glucose levels were still up and down, he in himself seemed good.  It was during my visit this day that I was blessed with being able to change his nappy for the first time. Clearly scared, looking at his small and fragile body. I thought how in the world am I supposed to do this  . Changing a nappy on a full-term baby is stressful lol, but on a micro preemie with legs the size of an average finger I genuinely thought “omg I'm going to break him”. But with gentle help and encouragement from the nicu nurse, the nappy change was a success (glad to report he didn't break).  As the nurse pointed out, they are stronger than they look. I would encourage any parent in the nicu to do as much as possible. Be as hands on as you can possibly be; when the time c...

Walking in to the nicu ward on the 29th it was only one day after my first visit. Frances agreed that I could go back in due to my work commitments; I was working for the next few days so wouldn’t be able to see him for a while. Frances would then do the days I was at work and this just seemed to work for us.   It still torments me to this day that we couldn't go together but we were powerless.  Walking in through the hospital this day felt different; it felt good and I felt a sense of positivity. We had received no phone calls or had any information to make us feel otherwise. So, as I scrubbed up, went back into the room and pulled off the blanket covering his incubator, I saw instantly that his skin looked less red and angry looking. It had taken a pinker tone. This only helped to raise my positivity.  It was at this stage things began to take place and I began to learn the lingo and language of the nicu. I was informed his haemoglobin levels as well as his glucose ...

I remember this day so clearly in my mind, I would say out of all the best days in my life this had to be up there along with the birth of my first born. On the morning of the 28th March 2020 I arrived at the hospital. Sitting in the car with Frances, I couldn't believe what I was about to do. I was about to go and see my son for the first time and I was filled with so much happiness, while at the same time feeling so scared it was like I couldn't control my emotions. I remember just shaking. Frances gave me some words of encouragement and said, “you will be fine”. I was still trying to get my head around him actually being here, as well as knowing I was going to be going in there alone; I just didn't know what to expect.  I made my way into the hospital and found myself ready to enter the doors of the nicu ward. Up until this point I had never really heard of nicu, I didn't know what I was going to see. I made my way through and I introduced myself as Oliver’s dad. It ...

Where to start... So, the first 24 hours of our son being born. Let me start by saying my son’s Mum was doing absolutely fine, apart from obviously going through the trauma of a premature birth and everything that comes with it. In stark contrast, I was a complete wreck. I was at home not able to see anyone or talk to Fran, plus, everything Fran’s end at the hospital was frantically busy so there wasn’t anyone with free time to give me any information.  After the birth, they managed to fit my son with a breathing tube and all seemed well. It would be 8 hours before Frances could go and see our son. The waiting was unbearable, and due to covid and lockdown restrictions I couldn't even go to the hospital to see her or our son. My only route of communication was through the phone, and obviously Fran needed to rest. So 8 hours of waiting for information felt like 8 days. I mean, 8 hours for a 23week baby is a long time; anything could go wrong. And that's all I could think about. ...