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

So last night was the first night I have had a dream about Oliver for a long time, like months and months. It's a sad feeling to know I haven't had any dreams about him, just as much it is sad to see his face again in some lively way, other than a photo or video. Them dreams where it feels so real, as if your actualy there, but you wake up knowing its impossible. However much you try and get back to sleep for the desperation to be back in that moment with your child, but you just can't is heart stopping. I am in no way religious, neither do I belive in any other higher power, but I would say I'm slightly jealous of Ashley Cain. Whenever I see his posts about feeling blessed that he's daughter has sent him a sign. There's just something in me that I can't bring myself to belive, I wonder if it's the fact that I'm angry at my child passing on, or if it's just something I have been Brought up with. I suppose other factors could be part of this, but ...

⚠️⚠️⚠️⚠️  warning graphic image below!⚠️⚠️⚠️⚠️ 4th July: still upset and very concerned about his belly, I couldn't wait to go and see him. Oliver was doing so well considering, I mean you all saw the image so you can imagine where my head was at. Even tho it was a couple of days since I had seen the image I had hoped that it had improved. (Wrong)  Going in I met with the nurse, she explaid Oliver was doing fine. His oxygen levels where good, and his blood gasses were at the levels they were happy with.  This meant that he could possibly return to the conventional ventilator tomorrow. I couldn't focus on where abouts we were on olivers journey. At one point we was going foward with the momentum of a steam train, and the next we was going backwards like bad game of snakes and ladders. I guess we was making progress tho, however slow it may have been. His infection markers were also reducing so this went a long way to making things easier to digest. His stomach was still sw...

Just a quick warning ⚠️,  this blog post has a disturbing image, along with some honest thoughts that some might find disturbing. 27th June 2020. With everything that had been going on with Oliver, from being front page of the Sun and all the ups and downs we had faced. Today was a day of reflection, today was the day me and Frances had been together for a whole year. The struggles and stress we had been through and we're still going through was hard. Again going back to my digression blog, there will be more on this, but for now, we were happy celebrating a whole year together. ⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️⚠️ From now please be causious, disturbing image below. 30th June: Oliver was still unwell with fighting of the infection, but was weighing in at 4.189lb so progression was there, albeit slow. Sitting with Oliver, the nurse came over to her computer screen, the ones at the end of the incubator. She was met by a few other nurses on the ward. As they all gat...

23rd June: Oliver was doing well, the last few days had seen him stable and his medications had been reduced. Oliver was on a total of 4 medications now compared to the 10+ he was originally on, so this was a massive improvement. Also his infection had cleared up, Oliver was infection free. 24th June: With Oliver still improving he was booked in for his stoma reversal surgery tomorrow. (25th June) Mum was with him today, she got in some more cuddles before he would soon be to sensitive to hold. When I recived these photos of mum holding Oliver, I always felt such happiness. I knew the benefits from skin to skin care and just the benefits of holding him. Not to mention the benefits for us mentally. There is no preparation for this journey and you can read leaflets and information till your blue In the face, but nothing can or will prepare you. 25th June: The big opperation ( stoma reversal ) The morning Oliver was due to go for his operation was a morning of many...

20th June: So behind the scenes of everything, something magical was happening. Oliver had made the front page of the Sun newspaper. It was something we was expecting, as we had been in contact with them for some time. With Oliver doing his absolute best with only a few minor set backs, home wasn't a too distant dream.  At this moment in time I was the proudest father in the world, I couldn't contain my joy of seeing this. I went out a brought like 5 copies and they were just for myself. All the family went out and bought loads, don't think we could get enough copies lol. There was a joy that I knew would bring comfort to the 10s of thousand or more readers, that miracles do happen. It was a sence of comfort knowing any one who was going through this could read and be posotive about there journey. Going far back to the very beginning of olivers journey, I remember going online to find success stories of 23wk preemie and not finding very much. So for me to get th...

17th June: As in my last blog post, I wrote about how there was another baby just came in and was premature and so so small. She was a 24wk little girl, I didn't catch the name as it was all rush, rush, rush. As I sat next to Oliver in the small corner of the room, I could see the nurses work frantically around her incubator just to keep her stable. Not being nosey, but overhearing, the little girl only weighing in at 310g made me go back to when Oliver was born. Sitting there filled with empathy and feeling my anxiety rise, I just wanted to escape, but I couldn't, I was there for Oliver.  My eyes diverting all over the place, looking at Oliver, looking at the little girls incubator, but then looking at the mum standing over her daughters incubator. Man I can't tell you how I felt, I wanted to talk to her, comfort her, but what would I even say. The tears in her eyes took me back to where I had been at the beginning of Olivers journey. There was a silent acknowledgement whe...

17th June: Over the night it seems Oliver went slightly down hill, high indicators show another infection. When I say another infection, I mean he was always having them. I don't always put them in the blogs as it would get tedious, but most weeks he had one. Also by infection, i have played it down, it was sepsis.  Due to this he was placed back onto the high frequency ventilator.   They also decided due to his weight and the concerns he was on the smaller side, they would skip the recycling and get him strait into the stoma reversal surgery in about 2 weeks. Happy this was going to happen so that we could move forward, but again filled with worry as it was another surgery. My boy who had gone through so much, just had to get through this one and then we was out of the worst of it. Just getting this done and knowing we can get him home was the only thing that kept me sane.  It was also said to me that he needed to reach 2kg in total, so they ...

16th June: I went in to see Oliver on this day, I know this because in the photos my hand is in them lol. Oliver had gained some new items, he had gained a pair of socks on his hands, not mittens but socks. It seemed Oliver was one for pulling out his breathing tube, so as a precautionary measure he had these on till we got him some mittens. Laying there all snug, looking relaxed and just had all his cares done, Oliver was just so calm. I sat with him for a good few hours before going back. As I was just leaving the doctors explained he was having an eye test today. It was good timing for me, as explained previously, I hate the eye tests.  Returning a few hours later after some lunch and coffie the nurses/doctors pulled me aside. It seemed the routine eye tests had picked up some abnormalities in his eyes. They had suspected that this was stage 2 R,O,P. For those who may not know the link is below.  https://www.rnib.org.uk/eye-health/eye-  conditions/retinopat...

11th June: with all the recent events and the good news we was receiving and viewing, it was nice to see a pathway out. Upon going to the hospital on this day, we was given an even clearer way out and a road map was set out. They wanted to start Oliver on a routine practice called recycling, this is when they take out what's collected in the stoma bag and push it through the bowel that's not currently being used. This helps to get the bowel ready for when it's reconnected post surgery. Again for us fantastic news, I remember thinking, we can do this, we can win this fight. They wanted to start the recycling very soon, but only with water to start with and then working up to his fecal waste in his stoma bag. Oliver also had a contrast scan on his bowel, this was to make sure things still looked good. Also on this day he was having his heart scan, I never liked when they had to do tests, it always felt like an experiment to me. Adding on to this, I was always apri...

Starting from the biginning of our journey with oliver, we knew this wasnt going to be an easy road, but it was one we was going to see through. However, after 2 months + or 70 some odd days in total of our Nicu journey so far, the stress started to show. Mysef and frances were beginning to crack, and in fairness we had every right to. Im sure the signs of stress started to show probably early on, but now being in eachothers pockets and being away from home, it was starting to effect us in ways we didnt think it would. The first signs of us begining to crack i would say is, some how we would be a little snappy with eachother, not being mean or horrible, but it seemed our tollorence levels where wearing thin. With all the emotions built up around oliver it was only time before it started to have an effect on our relationship. As the days went on and our time in london was forever extending, this also played a factor on us begining to crack. With lockdown stopping us from having any such...

7th June: unfortunatly on this day neither I or frances could attend the hospital, it was so long ago now, but I belive this to be a weekend, we usually went home on the weekends. The only interaction we got on these days was from the vcreate, but it was better than nothing. Sitting at home always worried as you do, knowing your helpless little child is laying in an incubator, and you're not there, it has this unimaginable mental strain. It's something you can't write about or explain fully, unless you have been through it. Fortunatly for us we got the best vcreate video imaginable. To this day I would have to say out of all the videos and pictures, this is still my favourite. (Comparison to an average full term baby vest 0-3 months) In the video below you are going to see Oliver in his very first baby vest, but also you are going to hear him make the first sound he has ever made. As much as this video brings me so much joy, I can't help but feel like I miss...

This is just a short digression about our accommodation. Due to covid and the restrictions we were unable to stay at the Ronald McDonald charity home, as this was shut. The impact I can only imagine for other parents would be the same as what we felt, and that was, well how are we going to be able to see our child. Traveling everyday to and from London wasn't pheasable, neither was it cost effective. Besides from petrol there was other charges so this made us anxious about how we would see our son. Luckily for us we were fortunate enough to be aloud to stay in the nurses quarters, gassiot house. This was situated just outside of the main entrance of St Thomas's. This was only temporary, this again gave us the worry we shouldn't have had. We was already worried about our son and to have to worry about accommodation just to see him was unbearable. While we was at gassiot house, they aloud us to be put on the waiting list for Ronald mcdonald house. Other worries were, can we s...

2nd June:  So today was an unusual day filled with some good news. Starting of they had told me that they had canceled his scheduled pda operation. Not surprised as this had been cancelled numerous times before. The good news was that they had canceled the operation due to Oliver having a scan and the pda duct was practicly closed. This was amazing news not only for the fact it had shut, but more so that he didn't need to go through another operation, this made us extremely happy. All the weeks of ups and downs and he is, he isn't, had all finally come to an end. The next step for Oliver was to stay in london to have his stoma reversal. It was agreed for him to stay in london, mainly to do with how he reacted to the trip to London. As you may remember from previous blog posts, he didn't take the trip well. Also he was scheduled for another eye test just to be sure they didn't miss anything. I hated the eye tests, when it was my turn to be in with him, when he had them,I...

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...