Realising it’s not just Oscar’s Story

I first wrote about Oscar in February 2014, when I was 34 weeks pregnant. 

I looked something like this:


Although I didn’t mention his name at the time, he was Oscar at that point. He’d been Oscar for quite a while or rather “Planet Oscar” as he was referred to. 

This is the very first thing  I wrote: 

“At 34 weeks into my first pregnancy I have been encouraged to start a journal. Why? Because I’m carrying a baby, who has a heart condition that is incompatible with life. That means when he is born, at best, we will have just a few minutes to pour a lifetime of love into before our son passes away.”

I went on to add: 

We have had so many discussions about what we should do, and in the end we agreed that as long as our baby had a chance, that as long as he was able to fight for, we would fight right beside him. That we would love and protect him, that we would do everything for him that we could.

On 12th February we met with a surgeon who has nearly 20 years experience with our sons heart condition. He was willing to try surgery to save our son, but ultimately said that we would be looking at a “close to 0% chance” of our boy surviving. They could try open heart surgery for our son at birth, but in all likelihood he would either not survive the surgery or end up stuck on a ventilator. His entire life would likely be under anesthetic in an operating theater with strangers.

Or, there was an alternative. We could do something which I never imagined ever having to do. We could hold our son for whatever moments of life he may have. We could tell him how much we loved him and we could let him pass, surrounded by those who love him.

Something that I have thought about a lot is what counts as a good life? Could it be possible that it doesn’t really matter how long a life is, but how it is spent? What would I want if i had a choice? To be cut open and surgeons to try everything when my life was never going to be normal, or to spend that time in peace with those who love me? If those were my only options, I know which one I would choose. 

So, at some point in the next 6 weeks I will give birth, we will show our son all the love we can, and then we will have to let him go. When this will be we don’t know yet, but one thing I am sure of is that I will cherish every moment we have with our son until that point. That’s why I smile when he is kicking into my ribs constantly. Yes it may be a bit uncomfortable for me now, but it is a memory I will be able to hold on to  for a very long time.

As much as I am able to, I want to document this process. I want to record what I am thinking and feeling as well as what happens physically. I’ve been told that I may never want to re-read this, but that if I never write it I may one day wish I had. I suppose I could have written this in a private diary, but honestly? I want to share my son with the world. I want to share whatever short life he has with as many people as I can. That way, maybe in some way his memory will be able to live on longer?”

I don’t really remember who it was that said I may regret never writing anything. They would have been right though. As hard as it sometimes is for me to write this blog, to write about Oscar and to re-read it, I’m glad that I have it. I have a safe place where Oscar can be read about and remembered. I have a place where I don’t have to worry about little things being forgotten, because reading about them can jog a memory. And sometimes maybe even new people will read about him for the very first time. 

When I did re-read that first blog recently I was surprised at how many of the words I’ve repeated so often were in it: 

I will fight with him for as long as he is able.

I will show him all the love I can in whatever time he has. 

He will be surrounded by love. 

I will cherish every moment. 

I will write so that maybe his memory will live on longer. 

In a way I wonder now if these were some sort of rules that I’d subconsciously made up? If somehow writing that first post made me create those goals for Oscar’s life, or maybe I would have done them all anyway? It doesn’t matter which is true or if it’s some combination of both. What I was surprised by was seeing them written down and becoming aware that three and a half years later I still believe in them. That I don’t disagree or doubt anything I wrote in that first post. That I would still want to say the same things.

I’ve had doubts since Oscar died. I’ve wondered if we could have made different choices. I’ve wondered if we could have ever achieved a different outcome. I think that’s natural for any parent. To wonder if you could have made a different choice. To have dreams and wishes for your child’s future. What that first post is helping me realise is that even if I did have the chance to change my decisions, I probably wouldn’t. Yes, if Oscar could have lived of course I would have picked that. But, knowing that he couldn’t, I would never have changed the decisions we made at the time we made them. The operating theatre birth and then Oscar going straight to surgery (which I know now wouldn’t have worked because he also had that fatal lung condition) would not have given us that precious time that we did get with Oscar. If, and it’s a huge if, he had survived the surgery I would probably have met him properly for the first time with him being in PICU on a ventilator. At birth, I would have had maybe a second to look at him. Instead I had hours to hold him, completely unrestricted by any tubes or wires. Nope, I wouldn’t have given that up for anything! 

Instead this was one of the first views I got of my son: 


As so often happens when I write, I get a little off track. I had this whole plan in my head for this post, and it hasn’t really turned out like that. Still, it’s kind of fitting since Oscar wasn’t a big fan of following the plan either. 

What I actually planned to write more about was me, Oscar’s Mummy. This blog is Oscar’s Story, it’s supposed to be about him. I made him, I carried him and now I’m telling his story. I have that responsibility to ensure that he is always remembered. But, something which I’m realising more lately is that it’s also my story. It’s told completely from my own biased perspective as Oscar’s Mummy. Now for someone who doesn’t like being the centre of attention and actually struggles in social situations that’s kind of scary. I kid myself that this blog is anonymous, but people who know me read it, so it isn’t really. This is probably the reason I have so many half finished blog posts, things that I would love to write about but can’t quite bring myself to finish and hit publish on. 

You see; as much as Oscar’s Story is about Oscar, my amazing baby boy who defied all the odds and gave us far more time than we dared imagine (bet your glad I didn’t go for that on his birth certificate!) it also needs to be about what comes after Oscar. About how on earth you survive after loosing your only child. On how you figure out how to move on after you hold your baby when he takes his last breath. And honestly, three years on, that’s something I’m still not completely sure of the answer to. Even now I’m still working on living and not just surviving. On figuring out how to live in this new reality. The reality where the person you care about most isn’t here. Where they never will be.

The number of untold stories about Oscar are running out, I am running out of unseen photos of him and I’m slowly realising that I need to figure out how to move Oscar’s Story forward. And in doing that, it’s about how I, as Oscar’s Mummy am moving on with only memories of him. I need to finish and publish all those half started posts, because stories and thoughts about life after Oscar are just as much a part of his story as the 23 days in which he lived. 


They are the Story which needs to be told next. Because loss will always happen, because there is no cure for CHD’s, because babies and children will always die and because parents will need to find ways to move on. Because as much as I hoped Oscar’s Story would support parents who discover that their (unborn) baby has a life limiting illness, it should also support the parents afterwards. Because for every heartbreaking loss of a child,  there are the parents that have to survive it. 

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Applying for Oscar’s death certificate 

As anyone who knew Oscar or has read this blog will realise, very little concerning Oscar ever went to plan. I’ve always said that Oscar liked to do things “Oscar’s way” and that very often turned out to be the best way. 

It probably comes as no surprise to learn that getting Oscar’s death certificate was not a straight forward process. 

Oscar died on the Thursday. On the Friday (25th) we went to register his death. We took the paperwork given to us by the hospital to the local registry office as we had been instructed. Normally you would need to make an appointment, and they offered us one for the following week. 

The issue with this was that we were not in our home town. And until we had a death certificate for Oscar we could not move him from the hospital mortuary. I was not prepared to leave the town while Oscar remained there. 

So, we sat and waited. We were told if we did this they would likely be able to get us seen when someone else either didn’t show or cancelled. 

We sat in this separated part of the waiting room, for bereaved people. In a way this was good, because we weren’t sat with all the new parents come to register their child’s birth (we hadn’t actually done that yet either) but, honestly, it was a horrible, sad corner to be sat in. Nobody really made eye contact and there were vases of Lilys, boxes of tissues and a rack of useful leaflets. It was also right by the front entrance so everyone who came in could see you sitting there, kind of like you were exhibits in a zoo. 

At some point during that morning we were spoken to again by someone. They had noticed a problem with Oscar’s paperwork. Because the doctor who completed it had mentioned the words “operated on” and that was within a certain time period, Oscar was supposed to have had a post mortem. I suppose to ensure his death hasn’t been as a result of an error during the surgery. The registry office staff were in contact with the hospital staff that day about this and all we could do was wait while they figured out what needed to happen. 

What I actually would have loved to explain to them was that he was born with a condition that was incompatible with life. He lived far longer than he should have. That registering his death was something we knew we would have to do from a long time before he was even born. 

What I actually did was sit and wait. Yes, we could have left. They could have phoned us once it had been sorted, but honestly, where would we have gone? We had spent all of the previous days with Oscar and now we couldn’t do that. There was no point in going anywhere as there was no-where to be. 

Five and a half hours later, we accepted that there was nothing more that they could do that day. Oscar needed to be referred to the coroners court and that couldn’t happen until Monday.  And that meant we would be staying in the town until then as well. Yes, we could have gone home for the weekend and then come back, but I just couldn’t leave Oscar. 


When we left the registry office we went to see Oscar in the mortuary. This was something we were told we could do. We sat with him for a while. We held him and we even took a few more photos (those will always be just for my eyes.) What I will say is that he looked peaceful. I stroked his face completely free from tubes and wires and when we left, we put his duck comforter on his head. 

We went back to see him on the Saturday and Sunday and on both occasions we found his duck on his head when we arrived. 

I don’t remember much of the weekend. I know we spent some time looking up funeral directors in our local area. I know we went for a walk or two, but the only really clear part of that weekend is the few minutes we spend with Oscar each day. The only part that really mattered to me at the time. 

On Monday we went to the coroners court. We didn’t actually need to go there, but figured that it was only a few minutes walk from where we were staying and that we would get answers quicker than over the phone. What I wanted to know was when Oscar’s autopsy would take place. This is something we had already said we didn’t want when he had died. We know exactly why he died. I didn’t want Oscar being cut open again. I hated that because he had surgery, it was now a decision taken out of our hands. I’d actually already apologised to Oscar at the weekend for what was going to have to happen.

The coroners office actually gave us some good news. They were happy that an autopsy wasn’t needed. They were fine with the death certificate being issued. It sounds odd, but I actually smiled when we were told that. 

We then went back to the registry office. We were told that they were understaffed. We could come back tomorrow (Tuesday) and wait for a cancellation appointment or we could book one for Wednesday. Neither of these options I was particularly happy with. 

What happened next was that I stormed out of the office and went for a walk. No idea where I was going, but it was my only option for not screaming at someone or crying in front of them. I returned maybe 15 minutes later and the person now on the desk remembered us being there on Friday. She told us to take a seat and she would see what she could do. 

As it turned out, what she could do was put us first on the list, making the first booked appointments run late (sorry about that!) 

Once we were in the room we were told something we didn’t know was possible. That we could register Oscar’s birth first. He was born out of area so we didn’t think we could do that until we got home. So, before we registered his death, we completed a record that said he had been born. That he actually existed. I think it would have been something that always bothered me if we hadn’t been able to do that; to have his death registered days before we were able to do his birth. 

Of course, once we were registering Oscar’s death, we needed a final curve ball or two. The first being that we were unable to read the doctors name who had signed the paperwork. He wasn’t one of Oscar’s usual doctors. This was sorted by a phone call to the hospital. The second was that we couldn’t read the spelling of Oscar’s lung condition. A quick google search solved this. 

Actually  it turns out the second problem wasn’t solved, as that lung condition is still spelled incorrectly on Oscar’s death certificate! It was something that we could have got corrected when we realised later, but I’ve never wanted to. I think it suits Oscar better that the error is there! That according to his death certificate one of the causes of his death is something that doesn’t actually exist (it’s only one letter that is wrong.) 

That official cause, with the correct spelling: 

Hypoplastic left heart syndrome with restricted atrial septum and pulmonary Lymphangiectasia. 

(Yes, it’s a mouthful and no, I still can’t spell lymphangiectasia without looking it up!) 

On that Monday, we were initially told there was no chance of us being able to get the death certificate that day. That it was impossible. Now, we all know a little baby who was an impossibility. For whom, we were told there was no chance. We know that he proved everyone wrong. Oscar taught me that impossible isn’t always so, and he taught me that sometimes being stubborn isn’t a bad thing. Oscar taught me that it’s OK to fight for what you want. 

That Monday was the first time I really realised those things weren’t just true of Oscar. That maybe it was ok for me to try doing things “Oscar’s way.” Thanks to this and to a caring lady in the registry office who bent the rules a little, we got what we needed that day. 

On our way back to where we were staying we of course went to see Oscar. We did this every day he was in the mortuary after he had died. I knew he was gone, but a part of me couldn’t bear the thought of him being alone all the time. On the Monday I thanked him for giving me the strength to do things Oscar’s way. 

 All of the above was difficult at the time, and not something I would wish on anyone. The process of getting a death certificate should be straightforward. Especially when you are already trying to cope with the loss of someone that you love dearly.  Looking back now though, it actually makes me smile. It’s just another example of how things concerning Oscar didn’t work out at all as we planned. If we had got that death certificate on Friday we wouldn’t have had those extra cuddles. I wouldn’t have been able to spend time talking to him after he had gone. I wouldn’t have been able to tell him the things I never had the chance to while he was alive. The delays actually gave us a little more time. And time is a very precious thing. 

Oscar left the hospital mortuary to be transferred to the funeral directors on Tues 29th April at 11:30am, just after we had given him some final cuddles. That afternoon we went home, able to to do that once we knew Oscar was where he needed to be. 

When Oscar left the hospital his duck friend was on his head, and his monkey was beside him. Just as they should have been. 

Why “stop” doesn’t mean giving up 

On April 24th 2014, Oscar’s bed was surrounded by doctors and nurses. They were pumping him full of medications and fluids, trying to stabilise them. I was sat by the wall at the corner of his cubicle. I told them to stop.

They kept working, while one of the doctors came to talk to me. To ensure I really knew what I was saying. I was clear, they needed to stop. Oscar had fought enough, he had given us more time than we ever imagined, but that time was up. 

If the doctors had kept working on Oscar and managed to bring him back, there is a very high chance he would have had brain damage or a stroke. He would not have been the same Oscar. And then? He still wouldn’t have been able to breathe without that ventilator. His lungs were still unable to work, his heart was still only half a heart. If the doctors had got Oscar back that day, yes, we would have had a little more precious time, but we would still have had to make the decision to remove that ventilator. Maybe hours later, maybe a day later but it would still have had to happen. 

If Oscar had any chance at all, I would have never have asked them to stop. I would have fought forever for him, but that wasn’t an option. 

The option was fighting for a different ending. Asking the doctors to stop, to fight for Oscar’s final moments being as peaceful as possible. For them being then, on the afternoon of April 24th. 

I’ve written that when I held Oscar that final time, he was free from all his tubes and wires. That wasn’t strictly true. When he was placed in my arms he was still attached to most of them.  The doctors (or maybe nurses?) removed those remaining  tubes and wires while I was holding him. As they took away the things (barely) keeping him alive, he was completely surrounded by love. The only one that remained was his pain relief (morphine I think?) that they increased the dose on a lot. 

If we had planned letting him go, I imagine things would have been less rushed, but I know that would have given me a lot more time to thing and worry and obsess over every detail. 

When I said stop, to when he was placed in my arms was probably only five minutes. There was no time to second guess a decision, or talk it over. It had to happen in that moment. 

Every other decision regarding Oscar we made was discussed, disected and analysed. I don’t doubt a single one of them was the right one. 

That decision to stop? That was the right one as well. And never for a second have I believed that we gave up. There was no other choice. It was the only option left. 

Before Oscar was born, when we got the diagnosis I started writing my original blog. It was called “a moment in time.” That decision to say stop was just that: a single moment in time. I had no idea when I created that blog, just how much the title would end up reflecting Oscar’s life. 

While this blog is now and will always be “Oscar’s Story”,  I think the “moment in time” title is very fitting as well. When I named the blog, I thought we would only have moments with Oscar. We did. We just had many more moments than I ever imagined. And I wouldn’t give up a single one of them. 

April 24th, three years on

April 24th 2014 was the day Oscar died.  It was the day that I always knew we would have to face. It was the day I had been terrified of since we got Oscar’s diagnosis. It is the day I didn’t know how I was ever expected to live through.  It is also the day that I realised that Oscar still had it in him to throw us one last curveball. That as much as I had imagined what would happen and what it would feel like over and over in my head, things didn’t happen as I had imagined.
 Before Oscar was born, when we chose comfort care for him, I knew that I wanted to hold him as he died. That was our plan; to love and hold our baby for all the time he had. That was what I wrote in my notes in my birth plan. Being able to hold Oscar was my only wish. When our journey changed and Oscar was able to try surgery, I knew that it was likely Oscar wouldn’t die in my arms. That was something I had to get myself used to the idea of before we agreed to the surgery. I assumed he would be more likely to die in an operating theatre surrounded by strangers. Before his birth that was something we had decided we didn’t want. It was something that we had been sure was the wrong choice for Oscar, but then when surgery became an option I was surprised by how easily it then seemed like an acceptable risk to take. This was probably partly due to us having spent all that uninterrupted time with him on the day of his birth.  Both of those choices were the right ones for us at the times we made them. That is one thing that I have always been very sure of.

On  the morning of April 24th we moved away from Oscar’s bedside into a room to talk with one of Oscar’s doctors. He explained that he was pretty confident that Oscar had the lung condition which meant he could never come off the ventilator. That the lifeline we had been thrown the previous evening was likely to be incorrect. The pulmonary bands were working as they should. This meant we were out of options. We had to take our son off his ventilator one last time. We had to let him go.
 He did say though, that the MRI could still happen. We were given the choice to sedate Oscar again and take him to another part of the hospital for an MRI scan. This MRI would be to try to confirm that the pulmonary bands placed during Oscar’s surgery were in the correct place and working as they should, and that he had the lung condition. After the MRI had confirmed what we likely already knew, we would decide when to take Oscar off the ventilator. We would choose when to let him go. This was one decision I had never wanted to make. How could I look into my sons eyes, to see him so alive and to say, yes I want to put an end to that?
 

Due to Oscar’s frail condition, and that to have the MRI he would have to leave the PICU, it wasn’t without risks. We have videos of me holding Oscar early afternoon on the 24th. In the background you can hear the medical staff discussing all the emergency equipment and medication they needed to take with them. I never imagined they would need to use it.
 As they were sedating Oscar for the MRI, things changed very quickly. I was standing beside him as they changed him to a portable monitor. The numbers started changing and alarms went off. I wasn’t worried. This happened before when he moved bay and it was due to the portable monitor being used before for an older child whose readings were supposed to have different limits for blood pressure, oxygen and heart rate. So, alert alarms would sound, and it was just because they hadn’t yet adjusted the settings for Oscar yet.

Only this time it wasn’t. His blood pressure really was dropping and he really was struggling. His body could not cope with the sedation he was being given. His bed was quickly surrounded by doctors and nurses who tried to stabilise him, and I was moved back to sit in a chair at the edge of the cubical. They were pumping Oscar full of medications, and fluids and trying to stabilise him. The longer this continued, the more it became clear that they were struggling. He wasn’t responding to the medications. He wasn’t improving. He wasn’t going to come back from this.

We asked them to stop. We knew this was it.  Oscar was telling us he’d had enough. Our amazing brave baby boy had taken the decision I couldn’t bear to make away from us. He had chosen the time he wanted to go. He had made what I imagined would be an impossible decision, easy.

And what was I then given the chance to do? To hold my baby. The nurses placed Oscar in my arms and remove all the tubes and wires (except his pain relief.) Then they took away his ventilator. I held Oscar as he took his last breaths. Different day, different time, different place and many amazing memories later, but Oscar’s life ended just as I intended; peacefully and in my arms. I got my one wish.

There was no doctor stating “time of death” as on TV shows. I know it was somewhere around 3pm, but the exact time doesn’t matter. It would be recorded on his medical records and would be easy for us to find out, but it isn’t something that I actually need to know. A specific time wasn’t important.

After he had gone we moved into a private room, ironically the same one where we had discussed our options with the doctor hours before, and we got to spend some time with Oscar. We washed and changed him and we dressed him.
We dressed him in the Tigger outfit that he had never had the chance to wear.  I’ve now realised this was especially fitting since his Tigger was the friend picked to stay with him during his MRI and was right beside him when all medical staff were working on him and we had to be moved away from him.
We also put a pair of his socks on him, which I remember apologising to him for because the colour of them clashed with his Tigger suit!

We then held him and a nurse took some last family photos for us. We were then left alone with Oscar. We took a few photos of our own, which are some of my favourites, but would never be right to share here. This is part of one though:




We had a set of footprints taken. The nurse also tried to do a hand print, but it didn’t come out properly due to Oscar hand. She offered to redo it, but we said no. If Oscar had any say, I can imagine that was exactly the way he would have wanted it.

We also had some of the nurses who had cared for him come in to see him. We spent a few beautiful hours with our baby saying goodbye and trying to make a few final memories.
 And then, when we felt it was the right time to let him go, the amazing nurses let me carry Oscar through the hospital to the mortuary in my arms so that he didn’t have to leave his home in a body bag. Since Oscar had been admitted to the PICU, I had held him often, but I’d always had to be sitting in a chair right next to his bed  due to the tubes and wires. Taking him for a walk was something I always wanted to do. The fact that he had gone, and where that walk was leading weren’t important, I was just glad I had finally been able to walk with Oscar in my arms.

I can’t believe that day was a year ago now, that somehow I’ve managed to survive a whole year since my heart was completely broken. I remember everything so vividly, and despite it being the worst thing that has ever happened in my life, I am so grateful for the memories. I can’t ever wish them away, I can live with the pain. What I could never survive was to forget Oscar’s life.

I took a final photo of Oscar alive once the ventilator had been removed, but honestly that is the one photo I find it really hard to look at. It does confirm though, that we made the right choice. You can’t see Oscar in that photo at all, he had gone.

What I will share is what I consider Oscar’s final photos, taken earlier on the morning of April 24th:
 
Oscar looks to me like he is puzzled in that last photo, or maybe that he is asking “Why?”
 I wish I could answer that one, Oscar.




Today: 

I didn’t take nearly enough photos on Oscar’s final day. Had we known what was going to happen, I would have taken many more. I wish I’d taken more photos in those final moments. I wish I’d thought to ask someone else to take a photo when I was holding Oscar that final time. 

In 2015 I said I didn’t like that one final picture I had taken, it’s not one I ever shared. I’ve edited it a little and I’d like to share it now:


His last few moments, as I hoped; tube and wire free and in my arms. 

Getting over the death of a child is something I think never actually happens. Yes, you can move forward and yes, you can find ways to cope; but you never get over it. There are still days that it hurts so much that Oscar isn’t here. Days when I think the world is so unfair. But, I survive them, time doesn’t stand still and eventually those moments pass and when they do, I can remember the good moments. The moments when I’m able to focus on the positive, the many happy memories of Oscar that I have. 
Oscar only lived for 23 days, but for all of those days he was my sole focus. When he died, I was completely lost. How was I supposed to go on without him? Did I actually want to? Three years on, I’ve realised that want to or not, I don’t have a choice. 

So, three years to the day that Oscar died, I’ll go to work, I’ll smile and I’ll do my job. Because, I don’t have a choice. Because the world will always go on without Oscar, and as much as I miss him and love him, I can’t change that he is gone. All I can do is tell his story in that hope that his memory can continue.

Yesterday, I was listening to my iPod and a few lyrics from one song seemed particularly appropriate: 
“What would you do if you had more time? The Lord, in his kindness,                                    He gives me what you always wanted,              He gives me more time.” 

“You could have done so much more if you’d only had time,                                          And when my time is up, have I done enough?                                                                   Will they tell our story?                                         Will they tell your story?”              
The lyrics are from a musical, and the story isn’t remotely comparable with Oscar’s, it’s just those few lyrics that work, and also these from a different song:

“There are moments that the words don’t reach,                                                                       There is suffering too terrible to name.            You hold your child as tight as you can,            And push away the unimaginable.”            

Those lyrics describe the final moments I held Oscar when he was alive  very well. There is nothing that can ever prepare you for the feeling of holding your dying child. Of knowing that while you can feel them warm and breathing cuddled in your arms, that it won’t last. That they will just be allowed to slip away. When I was holding Oscar that final time, I don’t really remember saying anything to him. I don’t think there was anything I could have said. It wasn’t going to be ok. So, I just held him and that was enough. That was all he needed. 

April 23rd, three years on 

As much as April 23rd was supposed to be about saying goodbye, it wasn’t a sad day.This was in part due to Oscar’s knack for doing things that couldn’t fail to make me smile at just the right moment. And Oscar, it seems still had a thing or two to show us.Remember Oscar hand? Well, today Oscar decided he was going to show us that he could still open his hand unassisted, something we were doubtful he could do:

 

So, him holding his hand in that funny position all the time? Apparently, just a party trick!

April 23rd was also about cuddles. Once we knew there was nothing medically that could be done for him, cuddles really all that he really needed. Oscar used cuddle time to perfect his suspscious and frowny faces:





He was puffy again, due to the extra fluid he had been given yesterday, and this meant that his tubes and wires were marking his skin more than usual. The white material under the ventilator tube is just a piece of gauze to stop the tube leaving an indent in his skin, it isn’t a dressing.

Oscar spent a lot of time on the 23rd with his eyes open:


I have my suspcions that it wasn’t actually me he was looking at in the photo:


but actually Tigger! Of course Tigger was being used to stop Oscar from pulling at the grey plastic “tree” that was holding his ventilator tube up. It’s, therefore, a fair assumption that he was just trying to figure out how to get his orange friend out of the way so he could reach the tube that he really wanted!

That blue soft splint on his arm is also stopping him from touching things he shouldn’t. He had a new line put in the left side of his neck the day before, and we really didn’t want to risk him pulling that out! So yes, my baby was in (soft) restraints!

You can just see in the bottom of this photo that some wires appear to disappear into his nappy. They actually don’t, but just go under the velco closure of it. This was a good way to keep Oscar from being able to pull too much on those wires.

By the middle of April 23rd, we had spoken to Oscar’s team of surgeons, consultants and doctors. They had discussed Oscar in a case conference and opinions were divided.

Some believed that we we had reached the end of the road. That his lung condition meant he could never come off the ventilator, and that the only option left to us was letting him go.

However, there were some that were still focused on the fact that at birth Oscar was breathing unaided and continued to do so for two(ish) days, something he shouldn’t have been able to do with his condition. The thought here was that maybe the pulmonary bands placed in Oscars operation were too tight and if they were adjusted this could help improve things. We were explained to that this was extremely unlikely to be the case, but it was a remote possibilty, that we could investigate. To do this Oscar could have an MRI which may give the doctors some more insight into what was happening. It was a tiny glimmer of hope, but one I held on to as I posted the following on facebook:

“Yesterday we thought we had reached the end of the road. Today the doctors had a discussion and want to run a few more tests because “Oscar is not behaving how he should with his condition” and “he has us puzzled.” Do they not know that Oscar doesn’t follow the rules by now!” 

Before Oscar was born we puchased two of the same sleepsuit in two different sizes. The plan was that he would be buried in one and we would keep the other. They were quite plain, with a subtle star pattern on and had matching hats. The tiny cute matching hats were a big reason we picked that particular outfit…the irony of this is not lost on me!

In the bag I had taken to the hospital on the 23rd, I had placed one of those outfits for Oscar to wear once he had passed away, thinking that we could need it. I packed the hat as well, but already knew that I wouldn’t be using it.

When we got back to our room on the 23rd I took the outfit out of my bag…

Today:

April 23rd is St. George’s day. Oscar liked significant dates:

Friday 13th – Initial problem detected with pregnancy.

Halloween: scan

New Years Eve: scan

St. Patrick’s day: due date

April Fools Day: Birthday 

and because of this I was convinced that St George’s day was the day he would die. I spent most of the day convinced someone was going to tell us: “now is the time we take him of the ventilator.” When we got the news that Oscar may have one last hope towards the end of the day, I was obviously pleased, but at the same time it was another emotional rollercoaster. It reminded me of day two, when we changed our minds from comfort care to seeing if he would be a candidate for surgery. Of course I would have done anything for Oscar to have a chance, but it just wasn’t the plan. When you think you know what is going to happen, when you are trying to deal with certain emotions and terrifying decisions and then someone tells you that you have a different option it’s hard to cope with. In my head I was dealing with: “Oscar is going to die today” and then someone comes along with “actually, maybe that won’t happen just yet.” I don’t actually have the words to describe what that feels like. 

The only thing I am glad of about all of this is that Oscar has no real awareness of what was going on. That for him, this was normal. This was the only life he ever knew and so he was never aware that life wasn’t supposed to be tubes, wires and hospitals. For him shiney heaters, a duck on his head and constant one to one attention was completely normal. 

April 22nd, three years on 

This is a text (with spellings corrected) that I sent at the end of the 22nd April 2014:

“Apologies for the mass text and also to those whose messages I have ignored. Today has been something of a horrible day. We are now pretty sure that Oscar cannot cope without his ventilator, which unfortunately means we are out of options. No decision has been made about when we will let him go yet, but we would like to be alone with him then. If you would like to see him before that happens we would invite you to visit tomorrow if you are able.”

I wrote it, like many of my blog posts now, in one go. I didn’t re-read or check spelling or grammar, I just wrote exactly what I wanted to say. I was not strong enough to have that conversation with people in person. I wouldn’t have known where to begin talking.

At the time I felt guilty about sending that information by text, but now I realise that I did it in the only way that it was possible for me to do so at the time, and I am okay with that.

(On the evening of the 21st we moved bays in the PICU again, back to the higher dependency bay. I’m not entirely sure why this was, but it may have had something to do with Oscar’s condition not improving, and them wanting more staff around him. If the photo angles look slightly different, this is why.)

This morning we found Oscar wrapped like a burrito.


Prior to Oscar being on the ventilator, he hated being uncovered. He protested loudly when his clothes or blankets were removed. After his surgery, and as time went on, he did a complete 360 and got annoyed when he was wrapped up!

This was likely because being a baby burrito meant he wasn’t able to get into mischief and start pulling on things, and probably the exact reason the nurse had wrapped him!

His Mummy of course, was a push over and was happy to let him be uncovered, and then have to watch the little cheeky thing closely:


April 22nd saw Oscar’s second attempt at coming of the ventilator. This time we were pretty sure how things were going to go. We knew he likely wouldn’t cope and would have to be reintubated. We knew from last time that being put back on the ventilator would be a strain on him. That he would likely need fluids that would then put his kidneys under further pressure and that he would need to be sedated again. But, we had to try. We had to know that he couldn’t do it.

Being off the ventilator, meant more cuddles for me:


This time, as suspected, he lasted even less time off the ventilator, before he began to struggle. We could have not reintubated at that point. We could have just held him, and loved him, but we weren’t ready. We needed to have that talk with his doctors first, and for us to choose the right time.

When we were waiting in the corridor while they reintubated Oscar, I sent the text that I’ve put at the top of this blog. That was the point that I was completely broken. That is when I knew for certain that there were no miracles, that we had exhausted modern medicine. That our borrowed time with Oscar was running out.

When we went back in to see Oscar, I took this photo:


This was my cautious photo. One that says, I am too scared to get too close, because I can’t bear that we have to decide when to let you go. This was the photo I took when I wondered if I started trying to distance myself from him now, it would hurt less when we had to make that decision. I was terrified of that decision. That we would have to say, yes you can let my baby die.

When I was pregnant and we got Oscar’s diagnosis we were offered a termination. We were given the chance then to let our baby go, and I couldn’t do it. I could not make that choice to end his life. We knew the chances of loosing him during the pregnancy or birth were high, but I was ready for that. If he passed away then it would be because he couldn’t survive. It felt like it would have been his choice. I felt that I would always have known the outcome of the story. If we had chosen termination, I would always have wondered what would have happened, could he have survived?

And then, sitting by his bed I was running that same conversation through my head (sitting in the PICU you talk to yourself a lot!) Had we done everything? Could we choose the time and place to start letting him go, and yet still feel like we knew the end of his story?

I did make myself move closer to the bed and take a couple more pictures:


 I think what gave me the strength was knowing that we hadn’t reached the end of his story yet. That we still had a little time, and we still had the chance to make a few more memories. I also remember thinking that Oscar didn’t know what was going to happen. The PICU, tubes and wires were all normal to him, and as his mother it was my job to make sure that we maintained his normal for as long as we had left. Before Oscar was born, we vowed to love him and cherish him for as long as we could….we thought that would be minutes and just because he had other plans, it didn’t mean we changed ours. For whatever short time we could keep Oscar now, we would do everything in our power to let him know he was loved.

Although we knew the impossible and unthinkable decisions that the next day or two would bring, for now Oscar was still here and that was a very positive thing.

Today:

What you cannot see in the photo of me holding Oscar us how much I was shaking and how fast my heart was beating. I was terrified. Even though I’d been told that if he struggled, they would reintubate; that this wouldn’t been the end, I knew there was a risk that they wouldn’t be able to do so. I also knew how unwell Oscar had been after that first reintubation, there was a big risk of the same thing happening again.  As much as I loved every chance I got to hold Oscar, holding him at the point when he was so vulnerable was terrifying. The terror was something I would have gone through as much as was needed for Oscar. 

A doctor spoke to us that night, explaining what we already knew. While I wanted to hear what they said, a part of me just wanted to not listen. I imagined that if no one said it out loud, that maybe it wouldn’t be true. That maybe I wouldn’t need to hear that Oscar would never breath without that ventilator. 

Oscar was sleepy when we left the hospital this night due to the sedation needed to reintubate him. I imagined that the next day he would remain sleepy and may end up fluid overloaded again. 

There was a photo I didn’t post in 2015. It was taken between the “cautious” and “getting closer” photos above:


It’s nothing spectacular, but it did remind me of how Oscar liked to rest his toes on things. Also, that gap between his big toe and other toes? I loved that! (That’s his duck comforter he was stroking with his toe by the way!) 

April 21st, three years on

Written Two years ago: 
Something which makes it hard for me to write these posts is knowing what is coming next. I know, writing this now, that April 21st was our last “good” day with Oscar. Last year on this day though, I didn’t know that. We always knew Oscar’s life would be very short, but as the days went by in the PICU, although Oscar wasn’t improving, I began to feel like we were safe. We were stuck in our own little bubble, and we had this routine to our days that just seemed so natural. The fact that we couldn’t go on like this indefinitely seemed to get pushed to the back of my mind a little. A small part of me was perhaps always hoping for that miracle. Hoping that maybe someone would say his diagnosis had been wrong, or that there was some other operation that they hadn’t tried.

On April 21st we had another surprise. The night nurse had dressed Oscar in a babygro. This was the first time in the PICU that he had worn clothes, and something which we assumed wasn’t actually an option due to the tubes and wires. All day, doctors and nurses had to undo that babygro to change dressings, check wounds, change medication lines and examine Oscar. Everything took longer to do, but I didn’t hear one person complain about that. It was such a simple thing, but the fact that Oscar got to spend one day wearing clothes in the PICU meant so much to me.


The babygro was a little big and Oscar kept loosing his hands up his sleeves…it did at least stop him from pulling at his medication tubes though!

Note in the picture above that his NG tube is stuck on the opposite side of his face than usual. The nurses had given up on trying to keep it stuck on the right hand side!

Also, note Oscar hand…the angles of his thumb and index finger just seem impossible!

April 21st was also the day Oscar wore a hat without complaint! We snuck it on slowly while he was asleep, and once he woke up he did keep it on for a short while. I wonder if it was just to keep his Grandad (the Sunderland supporter) happy?



Or just because his head was cold, having now had all the lines in his head removed and been left with a lot less hair than when he was born:


Today: 

I’ve maybe left it a little late to explain, but the majority of each one of my daily posts I wrote in 2015. Basically that’s anything I’m posting in italics. Anything in normal font, is something I’ve written in 2017. 

A little secret is that I’m rereading all of the 2015 posts days before they actually happened. Even though I know Oscar’s Story by heart, it still affects me to read it. It takes me a little time to process, and then feel able to edit and repost it. It also takes time for me to be able to see the screen without the blur of tears (and I’m ok with that. I learned a long time ago that tears aren’t necessarily a negative thing, and that feeling and expressing pain is also ok.) 

That means that as I’m writing this I’ve already read the 24th April post. I’ve started planning the additions I’m going to make and I’ve started editing the photos. This is a little weird in that while I’m still writing about the positive moments here, I’m planning the writing about the negative. In a way, that’s how Oscar’s Story is in my head anyway. I don’t remember what happened on specific days, just a large jumble of fragements; some positive and some not so positive. 

I always struggle with what happens after the 24th. I’ve spent a large portion of time writing and thinking about Oscar over the last few weeks, and then suddenly his story ends on April 24th. They are no new photos of him and no new stories to tell. In a way that’s similar to his life; while we knew it would be short and while we knew the end was coming, it was still such a shock when it happened. Suddenly, we didn’t have daily hospital visits, we didn’t have hours sitting with Oscar, we had to figure out what came next. This year I’m hoping to share some of that story. Of what happens after your baby dies, what do you do then? Both the practical side and maybe some of how I coped with it emotionally. Because, that’s all part of Oscar’s Story as well. 

Anyway, I’m getting ahead of myself a little, there are still a few days of Oscar memories left yet. 

April 20th, three years on

I’m going to begin todays entry with something dated for the 21st:

Now given that there is no such thing as “Easter Tuesday” but there is an “Easter Monday” I am willing to bet that the above entry was written by the night nurse on the 20th-21st.

Oscar was feeling a bit more like his cheeky self today, and that meant we had to keep a close eye on him as he played with some of his wires:


(The bruise is from where his heparin line was.)


That face is his “I’m not doing anything I shouldn’t, honestly” face. Notice that the tape holding his NG tube in is loose again! If i remember correctly today was the day he tried eating that (tape not tube.)

Remember I call his right hand “Oscar hand?” Well, Oscar’s left arm and hand he was holding at an odd angle now. He had this x-rayed for injury, but none was found. It was suspected that it was just as a result of the lines he had in his arm/hand at various times.

It looked like this:


I called his left hand “Chicken hand.” It’s strange the things you start to come up after spending days in the PICU. I think a combination of stress, sleeplessness, fear and uncertainty mean that things like comparing your sick baby’s arm to a chicken wing seem perfectly acceptable.

Note that he is playing with another wire in the above photo, and also below:


Yes, the NG tube was completely out-of-place here. Before every use its position was checked, so nothing would have been given to him down the tube in that position.

Today we also took more pictures with his duck comforter on his head:



He also ended up with a blanket on his head:


Which, of course he didn’t object to at all, because it wasn’t a hat!

You may notice in the above pictures how close his soft toys are to him. They served a couple of purposes. The first was to stop the tubes and wires around him from touching his skin (he bruised and marked easily) and the second was to give him something to grab at that wasn’t those same tubes and wires. For their first purpose they worked well. For their second…well you’ve seen the evidence of their lack of success with that!

And if you think it was just the crazy parents arranging the toys, his nurse overnight took this photo:


Something we were told several times by the nurses was how nosy Oscar was. He especially liked the middle of the night to wake up and have a nose around.


April 19th, three years on

April 19th 2014 was Easter Sunday. As Oscar was due at the end of March, I never imagined he would still be with us at Easter. I think of Easter now, a little bit, as Oscar’s holiday. I will always be grateful that we got to spend one holiday in the year with Oscar. Oscar got chocolate for Easter of course: 

No-one told him he wasn’t allowed to eat it though!

The nurse who worked the night of Saturday/Sunday wrote one of  my favourite entries in Oscar’s diary: 


Easter Sunday was all about giving Oscar time to rest. The removal (and re-insertion) of Oscar’s ventilator had taken a lot out of him, and left him weaker than he had been. Over night Oscar had been passing more urine, and he was a little less puffy and fluid overloaded. His temperature also wasn’t as raised.


The photo on the left above is from the 18th, and the one on the right is from the 19th. The difference between the two is quite easy to see. 


On the 19th we weren’t sure what the plan for moving forward was. We were realising that since he had failed to come off the ventilator we were probably running out of options (and time.) We saw many other families come and go during our PICU stay, most moving to the lower dependency wards (and then, I’m assuming being discharged.)  At this point I realised that Oscar still being in the PICU wasn’t a good thing. By now, we should have seen some improvement and he should have been well enough to have been moved to the ward. Oscars condition wasn’t actually improving. All we were getting was more time with him, which was more than we ever expected we would get, so while bittersweet, wasn’t a bad thing.

Today:

From before Oscar was even born, I knew that his life was going to be very limited. I thought the best case scenario would be a few minutes with him. That every second of time would be precious. I was right about each second being precious; I was wrong about how many seconds we would have. 

Oscar lived through multiple sunsets, he lived through rain and and sunshine, through night and day. Of course, he wasn’t actually aware of any of that. I was. I knew that time was passing. That we had been given far more time than we were supposed to have and I knew on April 19th that it was probably running out. 

Part of me wonders, when we knew time was running out, should we have done something special? Should I have read him stories, should I have bought him gifts, sung him songs? I didn’t do any of that. I just sat with him. I spent time with him. Maybe that was as much as he needed? The stories and songs would have been nice memories for me, but maybe it’s actually better not to have that association? Every time I hear the song from his funeral, I just hope that I am strong enough not to cry. Imagine if I’d actually sung to him. If I’d read him a story. I don’t know that I’d ever be able to go near them again. Also, I can’t actually sing; what I’d actually have done was put on my iPod for him! (I did consider this at one point; I was sick of “twinkle twinkle” on the baby music box…not sure PICU would have appreciated musical theatre instead though!) 

As it is, I am content with how I chose to spend time with Oscar. Sitting beside him, giving him a running commentary of what was happening around him and holding his hand. All Oscar really needed was someone to hold his hand. Someone to love him, to stroke his hand,forehead and chin and maybe a duck comforter on his head and his shiny heater friend above his bed. 

And I imagine Oscar’s favourite way to spend any day was seeing how long he could get away with touching wires and tubes before he was redirected:



The answer to that, of course, being far longer than he should have, and at least until after I’d taken a picture! I think those eyes meant Oscar could have gotten away with anything! He certainly had me wrapped around his little finger! 

I never read Oscar a story and I never sang to him once he was born. While he was in my belly though? Well, we watched “Oz, the great and powerful” and went to see “Thriller: live”…I don’t think any of my stories or singing would have lived up to that! 

April 18th, three years on

When Oscar was put back on the ventilator he had to be given extra fluids. Normally when a person takes on more fluids, they just pass more urine to get rid of the excess. Their kidneys will help them to do this. Unfortunately, as we already knew Oscars kidneys were not working well at this point. This meant that the extra fluids were just accumulating in his body. A couple of medication alterations were made to help with this, but there was no instant solution.When I saw Oscar on the morning of the 18th I was shocked. He was very swollen, and very hot. He had a fan blowing by him to reduce his temperature.


His bed was also set at more of an angle than usual, which I think was supposed to help as well:


In the afternoon, Oscar’s nurse decided that to try to reduce his temperature she would put wet paper towels over him:



As everyone knows by now, Oscar hated hats. fortunately, paper towels are not hats and Oscar was perfectly fine with wearing one of them on his head!