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 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!


April 15th, three years on

Remember this photo from April 10th?


Well, on April 15th, Oscar decided to put his hand like this: 


On April 15th I posted a Facebook status saying; “Oscar is TWO weeks old!” The above photo should have been posted with that, but due to poor signal in the hospital it failed to upload. I didn’t realise until days later, so I never posted it.

Apparently my little superstar had been keeping count of how many weeks old he was!

I’ve said it many times, but before Oscar’s birth we were told he had “a close to 0%” chance of survival. Honestly, I didn’t think Oscar would make it through his birth. I never imagined he would make it to two weeks old.

In the front of Oscar’s notes on the PICU there was a copy of a letter which detailed the full extent of Oscars condition and our plan for comfort care. This was written before he was born and contained the facts as well understood them. It stated that Oscar’s prognosis was “guarded” and that he would likely be very unwell immediately following birth. It was then followed by the information that he had spent a day and a half with no medical intervention in our local hospital. Each nurse and doctor that cared for Oscar read this information, and it always amazed them that the baby in the bed in front of them was the same one as in that letter.



For him to have made it to two weeks old was something of a surprise to everyone!

Today: 

I went into Oscar’s memory box yesterday looking for a copy of that letter I mentioned above. I have many letters, but not that specific one. It doesn’t really matter that I don’t have it, all I actually need to remember is that Oscar clearly never read it, and decided to do things in his own way. 

So, instead of the negativity of that letter I’m sharing something else. I don’t mention the rest of my family on here, but all you really need to know is that they loved Oscar very much. As evidenced by the cards that always make me cry when I look at them:



Oscar was mine, I loved and still love him more than anything. But he was also part of a larger family of people that I know would have fought forever for him. 

As much as Oscar was my son, he was also a grandson, a great grandson, a nephew, a great nephew, a cousin and most importantly an amazing, deeply loved and special little baby. 

Because of Oscar always being in hospital, most of his family didn’t get the chance to meet him. For those that did, they saw for themselves just how special he was. For those that didn’t, I hope I am doing him justice in sharing his story. I hope that you feel Oscar is a part of your lives, of your family despite never meeting him. 

April 14th, three years on

Firstly a year on: 

On April 14th last year I didn’t post to Facebook, I didn’t send any text messages and there is no entry in Oscar’s diary. I’ve used the above three places to get my information on what happened each day, but without them I am pretty lost.


A year later I can’t remember specific days in the middle of Oscar’s life. In the early days after we lost him, I was terrified that I would begin to forget the details. I hated that I wouldn’t remember what happened on specific days, or that I may forget the tiny things that happened, such as the time he was doing baby weightlifting with a syringe. I went over and over things in my head to commit everything to memory. I looked at videos and photos over and over, I looked through his memory box often. I slept with his blanket, desperate to feel close to him. I was terrified of forgetting him. I was terrified of what would happen when the memories faded.


Now, a year on, the memories have of course faded. I can’t remember what happened on specific days, and I am okay with that. I know every item that it in his memory box, I know where his blanket is, and I don’t feel the need to sleep with it. I know that I don’t need to look at his things constantly to not forget him. It’s amazing how strong memories can be…I can remember the feel of his skin, the weight of him in my arms and his beautiful eyes without any effort at all. he is completely engrained in my memory and the fact that I can’t recal every detail all the time doesn’t seem as important. I can remember enough. I now know that I cannot forget him.


And, sometimes there is a sound or a smell that will trigger a thought or memory that I had forgotten. When this first happened I felt so guilty because it was something I had forgotten. Now, I like it when these moments occur. They remind me that the memories are all still there, even if I can’t recall them all at once.


My photos from April 14th tell me that Oscar spent the day looking at me and looking at his heater:



(The photo above is one of my favourites; just look at those amazing eyes!) 


Can you spot his Tigger in the first photo? Look who is on his bed sheet by Tigger’s leg in that photo!
Todays sheet was one of the PICU’s. I wonder if the staff just picked the first sheet they found, or whether they specifically chose one they thought we might like?
Oh, and that heater friend of Oscar’s? On April 14th I specifically took a photo of that:


This is what Oscar spent so much time being fascinated by!
This is another picture of that bedsheet:


Now, Tigger isn’t visible at all. Oscar had to be repositioned regularly by the nurses to prevent pressure areas from forming, but Oscar was also a bit of a wriggler. He was actually able to move himself down his bed, despite sedation and lots of tubes and wires!
And today: 
Three years on I’m surprised that my memories haven’t faded as much as I thought they would. I can still remember so many of those tiny insignificant things I was afraid of forgetting. And while this blog helps, I know remembering isn’t just because of it. I can remember things I haven’t posted about here (such as having to move so the cleaner could mop under Oscar’s bed) with such clarity, that it isn’t surprising that my memories of Oscar are so much clearer. 
I still have his memory box, and while it is my most treasured possession and the one thing I could never replace, it isn’t something I open that often. I carry so many memories of him with me, in my head. Yes, his box has his blue striped babygrow in it and yes it has that specimen pot of hair from a previous post, but just imagine; I only have to close my eyes to see those things so clearly in my head. And I can remember the feeling of holding him in that babygrow, and the feeling of sitting beside his bed holding that pot of hair. Yes, the physical items themselves are irreplaceable, but even if the worst should happen to them I have those memories in my mind. 
I also have my phone. Every photo and video I took of Oscar is on my phone. I have access to my entire blog on there. Oscar’s photo is my screensaver. Autocorrect suggests I should write Oscar every time I begin a word with an O. Everywhere I take my phone (and honestly, I never leave home without it!) Oscar’s entire Story is with me.*
Something I have come to realise though, is that Oscar’s entire story is always with me. It’s in my head. I am the one person who is uniquely qualified to talk about Oscar. He grew within me, I gave birth to him and I was with him every day of his life. Now, he is in my heart and head for every day of mine. No one else can say that. And I think that is pretty special. And as much as I share about him, I will never be able to share everything that I feel and remember, so that other people can say they have experienced it.So while I love sharing Oscar and telling everyone all about him and I will continue to do so, I’m glad that there are some parts of him, some memories that I get to keep all to myself. That there are some parts of Oscar that are just mine. 

*note: because I am completely paranoid, everything Oscar related in my phone is backed up to more than one alternative place!

Edited to add:


I was looking for something to add to tomorrow’s post, and found the above letter dated 14/04/17. This shows where we were medically with Oscar at this point. 

April 13th, three years on

April 13th 2014 was the day of the London Marathon. By this point we were staying at a Ronald McDonald house which was located at the sister hospital to where Oscar was. This meant a tube journey to see him each day and one back to our accomodation each night.On April 13th we were going in the opposite direction to the thousands of marathon runners getting to the race start points, so that made for an interesting journey!

This was our view from the hospital dining area that day:


It looks lovely and peaceful, and we decided not to venture out into the crowds.

After the race had finished we went out for some fresh air (ah, who am I kidding we went to a certain fast food resturant…cheap food options on a sunday were limited.) before the bridge was reopened to traffic:


Anyway, I seem to have gotten a little away from Oscar so far. While thousands of (slightly crazy) people were running around central London, Oscar was of course oblivious to it all.

Our biggest excitment today was that Oscar’s kidneys finally started to behave a little better. He still had a catheter and we became slightly obsessed with watching liquid flow down the tube. So obsessed infact that I took a picture…which I’m sure I don’t actually need to post!

This also impressed his doctors, so much so that his wee got a cheer from them during ward round!

Today was also the day that the tapes holding his ventilator tubes wouldn’t stay stuck. They had removed the line in the right side of his neck overnight and to loosen the glue on the tape holding that, they had used this amazing oil based product that basically disolves the glue. You can probably guess what glue they also disolved by accident!

Changing the tapes holding oscars ventilator and NG tube in place was not a quick or easy job, and I think he would have to have been sedated again, so as long as the tubes were still secure they weren’t too bothered about changing the tape because it looked a little untidy. They did however, try to stick it back down using tape.


You will also notice that he now has two new lines in his head. We knew when we left the night before that they were going to have to but more lines in overnight, and we suspected they would have to be in his head. It was still a bit of a shock the first time we saw him though.

They also had to shave more of his head, and they kept his hair for us in a pot.

I’ve mentioned before that Oscar was a big fan of the shiney heater above his bed. He would spend long periods of time looking up at ut like this:


Sometimes, he would also move his head from side to side, whilst still looking up. If Oscar had ever been moved to a bigger crib, I said they would have needed to find a way to attach that heater above him or he would have been so mad!

Like previous days, there aren’t many pictures I haven’t shared. There is one that I mentioned above:


If it isn’t clear what it is, never mind! If it’s obvious; this was a real proud Mummy moment! Some may think it’s gross (I fully admit it is a little, that’s why I’ve removed the colour) but I suspect others may understand how important every memory is; every photo is. 

I also have a random foot picture:


On Oscar’s left foot is the probe measuring his oxygen. Oscar was a wriggler, so you can imagine that even with the tape, this didn’t always stay exactly where it was supposed to! 

Oscar’s right foot has bruises and pin pricks. I believe they tried to get a line in here (remember this was getting increasingly difficult to do as days went by.) Most of Oscar’s vital medications were given via syringe drivers into “lines” in his body. Not having these medications was not an option. His “Dino-drugs” were especially vital, as they were doing what was supposed to be done surgically in the second part of his operation which could not be completeled. Oscar’s lines never lasted very long. They needed to find new entry points in his body frequently. Each new line usually took several attempts. Even a successful line would sometimes fail after just a few hours. He was covered in bruises and pin prick marks, but I could look past all of that, because he was still alive. Each mark, each bruise, each scar was just more evidence of how much he was fighting. And if I ever needed to see just how determined he was, I only needed to glance in his eyes: 

April 11th, three years on

“I’ve noticed I’m finding it a little harder to write each day now and I’ve been wondering why that is. I know it’s not because I have less to say about Oscar…I could talk about him forever and never run out of things to say. It’s possible it’s connected to me having less photos to work with now. In his first days I photographed everything, but as time went on I took less pictures. It just seemed that it was something that I kept forgetting to do. You would think that sitting next to an incubator, I would have lots of free time. I never seemed to. I had books and magazines with me that went unread, and time just seemed to pass really quickly. I think I spent most of each passing hour just staring at Oscar. I never got tired of just watching him, of talking to him and of holding his hand (and of course stroking his face like he loved.)I wonder if me finding it harder to write has anything to do with me knowing that as each day passes there are fewer days left to write about. The ending of Oscar’s story won’t be a surprise, and neither will the day it occurs on. It won’t be a happy ending, but it is a day I feel I have to write about. I’ve thought a lot about what to write then, and perhaps that is why I’m struggling more now. I’m not sure I want that day to arrive as quickly as it surely will.

Back to April 11th, and it was today that Oscar changed bays within the PICU again. The bay he had been in was for post surgery patients, and as recovery occurred patients were moved to the other bays. For Oscar recovery obviously wasn’t happening, but he wasn’t so unstable that he needed to be in the post surgery bays.

At some point during the day he was moved across the PICU in his incubator. As you can imagine, this wasn’t just a case of picking him up and putting him in another bed. In fact he didn’t actually change beds, his bed came with him.

All of his medication pumps were unplugged from the mains and attached to the framework of his bed, to temporarily run on battery power. He had to be disconnected from the ventilator and a nurse had to manually bag him. He had to be attached to a portable monitor as the monitors are fixed in each bay. They also had to draw up some more medications to be carried with us as they moved him about 25 meters across the PICU in case of an emergency while they moved him. Oscar was also still attached to saline bags that were on a drip stand next to his bed, these were connected to his stomach and had to be pushed along as his bed was moved….and as we found out part way through moving him, the stands needed to be lowered so that they could fit under the curtain rails that surrounded each bay.

And once he reached his new bay, they had to connect everything back up as it was before.

Knowing Oscar, you may be surprised to know that he managed the trip with as little drama as possible (perhaps a first for him) other than needing his airway suctioned when he reached the new bay, before going back on the ventilator.

This new bay was tucked in a corner, and other than poorer phone signal wasn’t really any different from the old one.

Todays pictures are from the old bay, I didn’t take any once we had moved it seems.”

Sleeping:


Or not:


“The collection of blood on the side of his chest, is actually underneath a clear dressing. It is from where they had removed his chest drain (the heparin causing him to bleed more than is usual.)

Also, note how his blanket is slightly over his head. I think the look on his face is him letting us know that he isn’t entirely convinced that isn’t a hat!”


“We came back from lunch to find his toe sticking out from the blanket. Like any good parent, I took a picture before moving the blanket!”

Looking back, it always surprises me that I didn’t take more photos. Those that know me, know I take photos of everything. Yet, on April 11th 2014 I took just 4. The three posted above and this one:


Now I love the above photo: Oscar hand and a little posh finger, it does make me realise that there will be no big revelations for previous readers of my blog. You aren’t going to see any new amazingly different pictures or likely read any new stories. There aren’t any. I believe I’ve told them all. All I can hope is that you keep reading, because sharing Oscar is my favourite thing. And Oscar stories and pictures will never become any less special to me. 

I remember having to move bed well. During the move Oscar was ventilated by a nurse (or actually a doctor I think?) using a bag and mask. That was scary. That made me so aware of how dependent on others he was. All that person had to do was make a mistake and Oscar could have been harmed. Of course no mistakes were made, and that person was very well trained, and he was no more vulnerable than when on the ventilator for that short period of time, but I still felt much safer when he had his ventilator reattached. 

Moving bed also felt a little like maybe hope was being removed. After all, we were still waiting for that second half of his surgery. If that was likely to be soon, then there would have been no point in him moving beds. He would have needed that surgical bed.