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

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

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 swollen,

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