1st April 2014, that was Oscar’s date of birth. Today I should have a 9 year old but I dont. Oscar’s short life meant I never even had a one year old, he never even saw a Christmas, he never smiled, sat up, crawled or walked….he didn’t meet any milestone that parents celebrate. I didn’t get to experience any of those things in my very short time as Oscar’s Mummy.
So, in a way, it seems kind of cruel that after someone dies one of the few things you can do is keep counting. Is to keep saying things like “Oscar should have been 9.” And it’s weird, because he was a baby when he died, that we still think “Happy Birthday.” It isn’t happy. It’s just another day when I have to remember that he isn’t here. And nine years since 2014 it’s just another reminder that he hasn’t been here for a long time.
2023 is going to be just another year where I wonder what could have been. If I could wish away his heart condition as well what would he have been like now? What would our plans for today have been? It’s crazy to think that had Oscar have lived my life would have been so different from the one I have.
But, I also have to remember that his heart condition did exist as it was a part of him since before he was born. It was congenital. And, had he lived, he would have needed medical input for life because of that. The reality is that if he had been here at 9 years old there is a very high chance that he would either have had a heart transplant or been on the way to needing one. The truth is that Oscar’s heart was just too different than what it should have been to have lasted him a full, long lifetime.
And that means, that had he been celebrating his 9th birthday it would have been likely that things a “typical” 9 year old would have wanted to do may not have been possible for Oscar. So, in a way, I grieve twice; once because he isn’t here and once because if he was he wouldn’t have that “normal” life.
But, despite all my wondering, I can never really know what kind of life he would have been able to have because the only life he did have was from the 1st to the 24th April 2014 and every moment of that was in a hospital. Most of that was also post surgery and he was connected to machines including a ventilator in intensive care. And in all my fantasy’s and wonderings intensive care isn’t something that features.
So I end up back at reality. Which is that Oscar should be celebrating his 9th birthday today and he isn’t. That I will never be ok with that. However, whatever life would have been like with Oscar I would always have given up everything to have had him here. That, no matter what that meant for me, I would always have wished I could have been his Mummy in life for longer. That I didn’t have to be a part of this “celebrating birthdays that don’t happen” club.
I could dream about “what ifs” forever, but they aren’t overly helpful. They are just wishful thinking and things that can’t happen.
However, something which did happen is that Oscar did live. Yes, it was for 23 days. Yes, it was way back in 2014, but it did happen. And on his birthday I can close my eyes and imagine those first moments where he was placed on my chest. That first night where he slept beside me and I struggled to stay awake because I didn’t want to miss a single moment with him. I remember the nurse insisting we took Oscar outside and I remember wondering what the point was (I understand now!) I imagine the doctors telling me that Oscar wasn’t behaving as he should and that there was a chance of that impossible surgery rather than just comfort care. I remember itching to hold him when they first took him away from me to take blood from him. I remember the ambulance ride from one hospital to another and the kit Kat pressed into my hand by the ambulance technician. I remember arriving at the other hospital and being taken to the PICU where strangers poked and prodded at Oscar settling him into life on a ward and I remember feeling the panic at them being closer to him than I was in those moments.
And most of all, from the 1st (and 2nd) April I remember Oscar. The weight of his body in my arms, the feel of his cheek under my finger, the feel of his fingers curled around just one of mine and the feeling of loving him completely. Of getting to be his Mummy. Of him being my baby. Of, despite everything, him being just perfect.
I’ve always said that I was grateful for all my memories of Oscar, that I got to meet him alive, that I got to hold him, to see his eyes and to spend those 23 days with him. I’ve always said that I would rather live with the pain those memories cause than not have had them at all. That it was better to have known and lost him than to have never known him.
What I’d not really thought about dealing with is the feelings you get when the memories start fading. It’s been over 9.5 years since I found out I was pregnant and that seems like a whole life time ago sometimes.
I found out I was pregnant in July 2013. I know this because I have a photo of the positive test. My first scan was in September 2013. That was the perfect scan where I didn’t know anything was wrong. But what happened between July and September? How did I feel? Did I notice any changes with my body? Did I tell anyone I was pregnant? …..I don’t remember. I’ve tried thinking about it, but I just don’t remember. It’s as if all that happened with the pregnancy after that point, all of the additional scans, the worry and the heartbreak just wiped out that one month where I would have been so happy. Where those positive memories, those worry free memories would have been.
I’ve still got my old phone from 2013 but there aren’t any clues there. It’s almost as if August 2013 has been completely wiped from existence. And even if I were to get pregnant again, I wouldn’t ever get to have that “perfect” early pregnancy again. The worries would be there from day one, or rather from before day one. And that’s why I wish I could have those memories back, because they aren’t something that can ever be replaced.
At that first scan in September 2013 they were unable to complete the Nuchal Translucency test as it was slightly too early for it to be done (the scan had been bought forward because I was going to be on holiday at the planned time.) When I had the rescheduled ultrasound a couple of weeks later that was when it was discovered there was likely a concern with Oscar’s development.
It’s strange because I remember the holiday; I can tell you where I went, I can remember the attractions visited, I can remember walking around supermarkets, I can remember some of the meals I ate even down to what the gravy was served in at the M&S cafe (ie, really mundane things!) but do I remember being pregnant on that holiday? No, I don’t.
The only reasons I know I was were because of the dates and because of a tiny grey cardigan I purchased in M&S (not the same one I ate lunch in.)
The cardigan still exists, the memories of being pregnant on holiday don’t. I would have said that it’s because after I knew something was possibly wrong with the baby I became hyper focused on trying to remember every detail, but then why do I remember other things about the holiday just not being pregnant? It’s as if my mind has somehow put a blank over those early memories of my pregnancy.
I once worried that Oscar would be forgotten, that my memories of him would fade. They probably have and I don’t doubt they will more as the years pass, but for now at least I can still conjure up a memory of him in my arms whenever I need to. And if I’m honest the images I think of are not always the ones you have seen, they aren’t the ones from the photos. Often they are the moments that were just mine and Oscar’s alone. The moments where there wasn’t a photo taken.
And should those memories ever fade then I have photos, I have the blog posts and in those he will never fade. In them my memories of Oscar will always last and if I ever need a reminder all I will ever have to do is go back and re-read them.
Because he isn’t here though, because there will never be new memories I will always wonder what was in those missing ones from my early pregnancy. I hope I was happy. I hope I got to experience that Joy people should feel when they find out they are expecting. I hope I had all those hopes and dreams for my Baby’s future. I hope I imagined a life as my Baby’s mother. Because even though I don’t get to be Mummy to Oscar in the way I wish I could, I hope that I once imagined I could.
We are now passing all the dates of those scans back in 2013 when I discovered that “something was wrong” with my much wanted and loved baby. They were 9 years ago now, far too long ago.
Circumstances since then have meant that there was no sibling for Oscar, there was no “redo” on my pregnancy; Oscar has been my only chance at being a Mum.
And now? Well my age means that there is more of a chance that it will never happen. That there won’t be another baby; that dream will never happen for me. And who knows if that’s something I will ever be ok with.
The shops are starting to fill with Christmas gifts already. I’ve no idea what 8 year olds are into these days; I should know, I should be parenting one and I hate that I’m not.
And what, as Oscar’s Mum, should I have done last night? Lit a candle for an hour. To remember. Well you know what? Some days remembering is just too hard. Some days I don’t want to just remember.
Sometimes I just wish there was a way to go back in time for just one more cuddle, just to hold him again and then I remember that would never be enough. That I’d always want more. That I’d always just want to be his Mum in every day life rather than Mum to a memory.
There will always be a part of me that wants more than just the candle, more than the photos and more than the memories and sometimes that part is bloody hard to deal with. Especially the knowing that there will never be a way to change that. That whatever happens in the future there will always be a part of me that is missing, that will be wondering “what if” and will want what I cannot have.
So tomorrow? Well I’ll just pick myself up and lock all the wishes and thoughts away again because there is no other choice. I’ll enjoy holidays, I’ll enjoy days out, but there will always be a part of me that wants what I can’t have. That as much as I am enjoying what I’m doing I would be prepared to give it all up for Oscar. That i would take every positive memory I’ve made since and risk them all on Oscar. If only….
Below is a story you may know, that you may have heard or read before; this is the story I wrote in 2014 for Oscar’s funeral (with a few tweaks.)
Oscar’s whole life is recorded in a blog (or technically two, but the first I’m the only one who can now see) and while it isn’t anywhere close to having him here, it is maybe somewhere that he continues to exist.
Yesterday was the 8th anniversary of his death; there wasn’t a post. Instead, today I have this;
Oscar’s Story begins in 2013 when at around 16 weeks pregnant I found out that he had a heart condition.
From that time forward Oscar had many ultrasounds, and I like to think that during those scans was when I first started to see my son’s personality. If the ultrasound probe was held near his head, he would cover his face with his hands, and if they then moved to his feet, he would try to kick it away. He would often be in the perfect position for his heart to be scanned, and would then roll over before it could be completed. It seemed clear from that point that Oscar was in charge. Oscar’s heart condition didn’t have a cure, just a series of risky operations to essentially re-plumb his heart in order to give him more time. I always thought that as long as he had a realistic chance I would take it. Really, the only long term goal I had was to meet my son, and to put a face to the kicks and hiccups. In February I was given the news that he had a “close to 0% chance of surviving” and that if I was lucky he might survive a couple of hours. I decided to have him at the local hospital, to give him the best chance of being able to meet his family during his lifetime. Oscar Barnaby was born on April 1st at 5:25am, 8 days overdue, screaming and alert. Given that I always thought he would be born prematurely, I never considered that as a potential due date, but had I thought about it, I would have realised that he was never going to pick any other day.
Oscar spent his first 36 hours of life at the local hospital. He was held by someone practically the entire time, and also had to endure cameras and phones in his face almost constantly. Luckily he didn’t seem to mind. While it was an amazing time, I think everyone was very aware that it could end at any moment. I say everyone but Oscar had other ideas, which included a ride in an ambulance and a stay at the specialist hospital. On the evening of April 2nd Oscar was transferred to the specialist hospital, as everyone was amazed that he was still with us and doing better than expected. Tests at the specialist hospital didn’t change his diagnosis, but given the strength Oscar had already shown it was decided we had to give that impossible operation a try. Just maybe I would get to spend some more time with him. What they completed of the operation was essentially a success, but his lung condition (a side effect of his heart condition) meant that he just couldn’t cope off the ventilator.
Oscar spent the remaining 22 days of his life at the specialist hospital. Yes, the operation and other medical procedures resulted in his spending almost all of that time connected to so many tubes and wires, but honestly it wasn’t a totally sad time – after all, every moment I spent with Oscar was a moment I never imagined I would have. The staff at the hospital were a huge part of enabling me to make positive memories, creating a diary for Oscar, taking photos and letting me have cuddles – which given the number of tubes and wires to which he needed to stay connected, needed something like a military operation to achieve. Oscar’s personality was pretty evident from the start – not only was he determined and a fighter, but he was also nosy and very good at expressing his opinion. If he heard a noise, his head and eyes would turn in that direction. I realise that pretty much everyone was a blurry blob to him, but he seemed to figure out who the doctors were at the specialist hospital pretty quickly. He would use almost any doctor’s approach as a signal to start pouting and frowning. With being on the ventilator he couldn’t make a sound, but one look at his face told you he when he was protesting…and from his first night at the specialist hospital, I was aware of how loud that protest would be if he were able. Oscar loved his forehead, chin, cheeks and hands to be stroked. I am sure he figured out at some point that if he frowned, and I saw it, I would start stroking his forehead since that frown seemed to appear far more than necessary, and disappear very quickly once he was getting some attention.
Oscar had two things that seemed to be his favourites. The first was the heater above his bed. It was a shiny metallic thing, which he seemed fascinated by. He would stare up and move his head from side to side, presumably because it made the reflections he was seeing move. I bought him a mobile to hang from it, but I am pretty sure he preferred the heater. His second favourite thing was a yellow duck comforter or blanket, which every baby who has surgery at the specialist hospital was given when they came back from theatre. Oscar’s yellow duck spent a lot of time on his head. He hated hats, and if one was put on him he would move his head from side to side to try to get it off, but put that yellow duck on his head and he was so content. Clearly he knew something about fashion that the rest of us don’t – after all, at one point he also made a paper towel on his head look pretty stylish.
I had a lot of comments about Oscar being very expressive, and that was true. He had a facial expression for everything. When he was being fed his milk through a tube, he decided that he needed to chew along, and when the nurses came to check anything, his eyes would follow them with a look of suspicion as they moved around his bed. Oscar could probably also be described as stubborn, and as having his own ideas about how things should be done. I thought I knew how things would go after he was born, but Oscar surprised everyone with his alternative plans. Very little happened as expected – instead my little boy did things in what I will forever think of as “Oscar’s way.” And, you know what? Oscar’s way often turned out to be so much better.
I could go on for hours about Oscar. I spent around 12 hours at his bedside every day, and in that time I really got to know him. He was his own little character and with those huge dark eyes he could charm anyone. When you are told that you will have a few minutes or maybe an hour or two, I cannot describe what it is like to have been given not just that time, but days, and then weeks longer. No matter how hard losing him has been, and as much as I wished I could have kept him, I will be forever grateful that I got longer than anyone said I would and that I got time to create memories that will last forever. As much as the medical interventions he received were a huge part of getting that time, Oscar’s fight and determination must have played a part as well.
Some people never really make an impact in their lives; Oscar lived for 23 days and had people all around the world thinking about him, praying for him and talking about him. I have no doubt he will always be remembered. He was my baby grumpy face, my baby Superman and my little miracle. He will always be a huge part of my life.
A year to the day after Oscar died I wrote him a letter; it’s edited a little but I’ve posted it below:
Dear Oscar,
24 days in April 2014? Those 24 days are your story, baby boy. They mark each day of your life, 24 days more than I ever thought I would have. 24 days in which you, my little amazing one, fought with everything you had. You gave your family time to hold and love you, to make amazing memories and to learn all about Oscar’s way.
You knew how special you were didn’t you? You recognised that sobbing mess at your bedside as your mother? You knew that all those tears were for you. Because, having met you and fallen in love with you, I knew that losing you was going to break my heart. Every one of those tears was because I loved you more than I ever knew it was possible to love. I hoped you felt loved and safe and protected. I hope that the pain you must have felt was worth it. I will never regret the chances taken to spend as much time as you had with you. I hope that if you had the choice you would have chosen to be with me. I hope you would have wanted to be given the chance to live.
I miss you so much Oscar. I don’t think that feeling will ever fade. I miss your eyes baby boy; I miss the way you would stare at me and the way you would frown. You didn’t need words or even a voice to cry…your eyes said it all. I miss seeing you with that duck comforter on your head. I will miss seeing you moving you head back and forth looking at the heater above your bed. I will miss stroking your face to calm you. I will miss seeing you reach for your tubes and wires with your hands. I will miss every single thing about you, for every single day that I live. You were uniquely you and so special. You were the tiny baby with the biggest personality.
I wish there was some way you could have stayed. I wish I could have raised you and watched you grow. You were amazing. I’m sure you would have continued to be amazing. I hope you know how special you will always be. How you will always be a part of me; perhaps the very best part. I will love you forever and there will never be a day go by when I don’t think of you. You are not replaceable, nor would I ever think to try. There could only be one you Oscar. You. The very best there ever could be.
I don’t think I will ever truly appreciate how much I gained from having you in my life. My life has been forever changed because you were in it. I will never understand why I deserved you. Why I got to be your Mummy. Why I was the one chosen to receive you, the most perfect gift. I will be forever grateful that I was though. I am so proud of you. I am so proud to be your Mother.
Thank you for fighting Oscar. Thank you for staying for longer than we imagined. Thank you for so many memories. Thank you for being my Son and my beautiful Oscar and now forever our
my little shining star.
I love you
Mummy
2015 me said everything I would have said today, even knowing all I do now I’d still go back and do it all again. The pain and hurt will always be worth having Oscar even if only for April 2014.
How has it been seven years? It seems so unreal that I should have a seven year old right now. It seems so unreal that it’s been seven years since Oscar was born, since April 2014, the month that Oscar lived in.
I often wonder what life would have been like had Oscar survived. When I was pregnant I was originally given a statistic for “chance of survival up to 5 years old” and that figure was far too low. By the time he was born that number had moved to “close to 0% chance of surviving birth.” He always had the odds stacked against him. Even if he’d survived the 24th April 2014, there was almost no chance he would be alive today. My head knows that, my heart knows that, but it never quite stops that “what if” feeling.
1/4/2014
Oscar wasn’t supposed to be an April baby, he wasn’t supposed to be the ultimate April fool. Oscar was supposed to have been born in March; I’d tell you a specific date, but the multiple hospitals caring for us each gave us a different one! The earliest was St Patrick’s Day (17th March), the latest was the 24th. I believe the 24th was the most accurate, and that means Oscar was born at 41+1….not bad for a baby I was given steroids for in the January since it looked like he was going to be born then.
From the very first scan in September 2013 until he left me on 24th April 2014, Oscar never did things quite as expected. “Oscar’s Way” was always his thing and those of you who know anything about him will know that Oscar’s way always turned out to be the best.
Oscar was supposed to be born “blue and struggling for breath” as the best case scenario or “stillborn” as the more likely case. The believe was that Oscar wouldn’t be able to cope with labour and that he would pass away at some point during that. On 31st March I was induced. At the point of the induction I knew Oscar was alive. From that point forward there was no foetal monitoring. It may sound a little harsh, but whatever monitoring would have found it wouldn’t have changed me needing to give birth. It wouldn’t have changed that the plan was “no medical interventions, only palliative care” for Oscar. The plan was love and cuddles, then us being transferred to the SANDS room until I was ready to leave the hospital without him. There was a photographer on standby to take what were imagined to be the only photos there would ever be. If I’m honest I was so sure that he wouldn’t be born breathing. That he would be born sleeping.
Of course, that was never Oscar’s plan. He was not only born alive, but crying and he breathed without assistance. His Apgar score was a 9 at both one minute and five minutes! If his diagnosis wasn’t known it’s possible he would have looked like any other newborn baby.
Oscar was my miracle. He was the baby who I was told to terminate. Who I was told wouldn’t survive to birth. Who I was told I would have just minutes with if I was lucky. What no-one knew is that Oscar was just as stubborn as his Mummy. That Oscar was determined to fight with everything he had. That Oscar didn’t believe impossible was always impossible. That Oscar liked to do things Oscar’s way.
My heart will never get over loosing him. My heart will never understand why I was given such a gift only for him to be taken away. But no matter how much time passes, no matter how many years, I will never ever regret giving him a chance. I will never regret being his Mummy and I will be forever grateful for the time we had together, even if it was far to short.
I’ve done it! Well, assuming I make it until midnight tonight, I’ll have made it 28 days or the whole month of February without eating chocolate.
Multiple times this month I’ve gone to purchase something and then realised it has chocolate in it. Let me tell you, not only is that disappointing, but suddenly everything else in the shop seems so boring in comparison! But, somehow, I still managed not to eat a single bite of chocolate.
Having said that….Friday is definitely going to involve me eating the box of chocolates that’s been in my desk drawer at work all month (well what’s left of them anyway, since I was feeling generous and starting giving them away to other staff!)
Im sure if your reading this you are aware of why I did this #dechox, but just in case; it was to raise money for the British Heart Foundation in memory of my son.
Oscar died at 23 days old and, obviously, chocolate was never something he tasted. That doesn’t mean I don’t have a couple of chocolate related Oscar memories though;
Oscar was born in a local hospital and then transferred to a specialist one. During the ambulance journey I was given a kitkat…a great temporary distraction technique from what was happening. I had given birth 24 hours before and was sleep deprived, which may explain why that kitkat is one of the clearest memories I gave of that ambulance ride!
In the specialist hospital Oscar celebrated what would turn out to be the only holiday he ever would; Easter. And while Easter obviously has a religious element, for me it’s mostly about the chocolate. And, though he was much too young, he was given his very own chocolate Easter chick.
I like to think the photo below is evidence that Oscar would have taken after me in loving chocolate;
So, while I’ve always loved chocolate and the BHF Dechox would have been something I was likely to do anyway, I like that Oscar has a small link to the chocolate element of it.
I don’t get to parent Oscar and I don’t get to be proud of his newest achievements, but I can use his name. I can use his memory to raise money. And as a really large bonus, in doing so I get to talk about my favourite subject (which is obviously Oscar, not chocolate!)
I wanted to say thank you to those that have supported me through the #dechox. Whether it’s by giving a donation to the BHF, putting up with my Social media posts or just not trying to tempt me with chocolate; thank you.
And, as an extra thank you (and maybe as an incentive if you are able to donate but haven’t done so) here are a couple of previously unseen Oscar images;
When I was 16 I volunteered in a British Heart Foundation charity shop. I didn’t specifically pick it because of the charity, it was just a shop that was in a convenient location that said yes when I asked. Who knew that many years later, that would be the charity that supported me.
Above are the leaflets I was given after Oscar’s diagnosis, which are produced by the British Heart Foundation. I read then from cover to cover, and while in the end, much of the information in them we never needed, they did help. They gave clear and concise information about the mind-field of a heart condition that Oscar was diagnosis. They are basically the “how to live with a child that has half a heart guidebook.” It’s funny how two little books could offer a little reassurance at such a scary time. Of how having it in print that we were not alone made it just that little bit easier.
Then, because of the British Heart Foundation, we also had Nic. A specialist heart nurse. She was the one who asked us after every appointment if we were sure we still wanted to continue with the pregnancy, a question which I always hated being asked. However, she was also the one who made sense of each appointment we had. She de-coded the doctor speak, she made sense of the doctors drawings of Oscar’s heart (you think doctors handwriting is bad, let me tell you their artwork is no better!) and she was able to make a box of tissues appear from nowhere! Without her support, it would have been much harder to cope with all those early post diagnosis appointments.
The British Heart Foundations involvement in Oscar’s Story is just one small thing that the charity does, but for me it’s enough to want to give something back to them.
The British Heart Foundation couldn’t save Oscar, but if he had been born 10 or 20 years from now, who knows…..you see, the money they raise also goes towards research into heart conditions. In the future maybe research will find something that can provide a better outlook for those parents who are told their baby has half a heart. Maybe in the future parents won’t be told that their baby has a “close to 0%” chance of surviving. Maybe they won’t have to make that decision to provide comfort care only at birth. Maybe, just maybe there can be a different future for babies born with HLHS.
And that is why, I try to raise just a little money for the British Heart Foundation every year. I can’t have Oscar back, he couldn’t have lived, but maybe the small amounts of money I can raise will lead to other parents not having to bury their children. Of not having to make that choice to say goodbye.
This year, for the entire month of February, I’m hoping to raise this money by giving up chocolate with the BHF’s #dechox campaign.
I’m a chocoholic. I eat chocolate every day. I have a chocolate drawer in my kitchen. My sister did the same challenge a couple of years ago and I told her I could never do it, yet here I am saying I will!
When Oscar was born we were told he would only live a few minutes at most, we were told that he wouldn’t be a candidate for surgery. I’ve repeated so many times on this blog that Oscar proved everyone wrong, he lived for 23 days and survived open heart surgery.
If a baby born with half a heart and a close to 0% chance of survival can live for 23 days, then I’m pretty sure I can do 28 days without chocolate.
As with most things I challenge myself to do these days, I do them because a tiny baby showed me that impossible isn’t always so, and that sometimes going outside your comfort zone can be a good thing.
So, I’ve pushed the chocolate to the back of a cupboard and it will remain their until March 1st.
Last night I ate an entire chocolate bar as a farewell treat
And I think that’s all the prep work I can do. Now I’m just going to need a lot of willpower (something I know I have very little of usually!) and hopefully some support from you to help me compete this challenge.
For Oscar;
If you have anything to spare, I’d appreciate it if you could donate to the link below. If not, just don’t tempt me with chocolate for the next month!
Last month I should have been sending my baby off to his first day of school. I should have had a tiny uniform all ready to go, a packed lunch box and a backpack that looked huge against a tiny boy.
This post was planned then, it’s been rewritten 100 times in my head, but I’ve been putting off actually writing it. You see, it’s just another reminder of time moving on; a reminder of the years passing without Oscar.
You see, Oscar died at just 23 days old in 2014. He never celebrated learned to walk, talk or celebrated a birthday. Starting school is just another milestone on the list of things he will never get to do. I’ve known this for a very long time.
Today begins Baby Loss Awareness Week. That one week in a year where awareness is raised that babies die. That not every parent gets to keep their child. That not every pregnancy ends in a new Live beginning. That for every parent who is excitedly celebrating milestones, there is one who is forever wishing that they could. A parent who clings onto memories, hoping desperately that they don’t fade. Who goes over them again and again in their head, as a reminder that their baby did exist. Who looks for any way they can slip their baby into a conversation to remind people that they existed and then feels guilt for doing so as it tends to make other people sad.
I am lucky that Oscar was born in a time where photos can be taken and stored digitally. I have them backed up in several places online, stored on two phones, a cd and physical copies printed. I am lucky. There are some baby loss parents that don’t have a single photo.
I am lucky that Oscar lived for 23 days. I got to hold him, breastfeed him, wash him and change his nappy. I got to dress him in clothes I’d purchased before he was born. I got to wrap him in blankets bought just for him. I had time to say goodbye. I am lucky. Some parents never get that.
I can remember the feel of holding Oscar in my arms, I can remember looking into his eyes, I heard the sound of his cries…. I have memories a plenty, which I will always be grateful for. I am lucky. Some parents will never have that.
But, they are just memories. Oscar will never age. There will never be new memories, or photos. That’s what being a baby loss Mummy is about. At whatever gestation or age you baby died at; it’s having hopes and dreams and memories that make you the happiest you have ever been, that are cruelty shattered. They just stop. And you have heartbreak and grief. You have to say goodbye when you just aren’t ready to. When you would give anything to have just had more time. You have to plan a baby funeral. You sit in the back of a hearse next to a tiny white coffin. You watch as the coffin is lowered into the ground. And you know that your life will never be the same again.
Life does move on, it has to. But a part of you always remains with your baby. A part of you died when your baby did, and you just learn how to put on a fake smile so that most people around you would never realise. You will never be the same person after loving and loosing a baby. You can’t.
Not a day will pass when you don’t think about your baby. You will always wonder what could have been. And, you will never quite manage to picture what you want to see. I can’t imagine what Oscar would have been like on his first day of school because my memories of him are as a baby. He’s face is so ingrained into my mind as it was, that I cannot imagine him any other way.
But, I do imagine he should be there, at those school gates. And, as we pass another milestone that will never be reached, I wish what I always have, that the impossible could have been true and my baby didn’t die.
I will be forever grateful that Oscar existed, and that my memories of him exist, but like every other parent that looses a baby, I will wish forever that I could have had more. That I could have been a parent to a baby that lived.
Last night I went to see a musical. This isn’t a big surprise to anyone that knows me; I see them all the time. I went alone. Also, not a surprise or something I consider brave, since I do that all the time as well.
I went to see Wicked, which you may have had a clue about given the title of this blog.
Wicked is one of my favourite soundtracks. “Defying gravity” is the most played song on my ipod, with “The Wizard and I” in second place. I mentioned in a previous blog that I adore the Wizard of Oz, so it may come as something of a surprise that until last night I had never actually seen Wicked.
Before 2014, I just hadn’t got around to it, and then after that date (ie, when Oscar was born and died) well as i mentioned in my previous blog post I started avoiding all “Wizard of Oz” related things.
That was, until this month, until i decided to be brave #4oscar.
You may think that going to a musical, that I adore the soundtrack to, and have wanted to see for years isnt that brave, but do you know who it is currently staring as Glinda?
Sophie Evans.
Do you see the connection yet? Probably not, since until this point, I may actually have been the only person who knew this;
When we picked “Over the Rainbow” for Oscar’s funeral, I believe I listened to every version that existed. I had this idea in my head of how I wanted the song to sound, and I also knew that I wanted those extra lyrics at the start:
“When all the world is a hopeless jumble And the raindrops tumble all around Heaven opens a magic lane
When all the clouds darken up the skyway There’s a rainbow highway to be found Leading from your windowpane
To a place behind the sun Just a step beyond the rain”
which the Judy Garland version’s I found didn’t have. Then I found Sophie Evan’s version. She was a finalist on the TV programme “Over the Rainbow” and had released it after the show ended.
That was the version that played at Oscar’s funeral. Her version somehow matched up with exactly what I had in my head.
When she took over the role of Glinda last year, I didn’t think I was brave enough to hear her sing live. Because, she has no idea (quite rightly so) that I used her song at by Baby’s funeral. So, I assumed I wouldn’t see Wicked until at least the next cast chang. That was until, I vowed to be brave #4oscar. Then it just seemed appropriate that I saw Wicked, with Sophie Evans, in April.
Because, sometimes being brave isnt about big challenges, because sometimes it doesn’t matter if no-one around you even knows you are doing something brave. Sometimes being brave is just about challenging yourself. Sometimes, its just about knowing yourself that you did something you didn’t know you could.
And, though this isn’t a review of the show I can’t resist the chance to say:
It is beyond amazing! The current cast sound so much better than the original broadway stars, and, though I was already a fan; Sophie Evan’s hits notes that I didn’t think were possible!
So, this year i have failed to keep up with my daily blogs on Oscar. I’d love to say I have a good reason, but I guess i’ll let you be the judge;
In order for me to write Oscar’s Story, I have to re-read my old blog posts. There is no way that I will remember the details of each day four years on. In fact, i’ll confess that mostly all the PICU days in the middle of Oscar’s life have blended into one. I tried to make Oscar’s Story honest and full of details. It isn’t an easy read for a stranger. But, I’m not a stranger; I’m Oscar’s mother. And while my blog is called Oscar’s Story, I am very much aware that it is mine as well. I lived through this.
While I try to add humor and a postive twist to my posts, it is actually a story about a baby who was born to die. A baby who lived 23 days, most of those attached to a ventilator in a PICU. It is the story of a baby who had open heart surgery. It is the story of a baby who died. It is not a happy, positive story. And to re-read each post means that I remember every moment. That I remember that story. And most of the time that involves me writing whilst I can’t actually see the screen because of tears.
But, Oscar’s story is one that I always wanted to tell. It is one that I will continue to want to tell. It may be a story that makes me cry, it may be one that upsets me, but it is also the story of my baby. And as much as telling Oscar’s story can hurt, I wouldn’t give it up for anything. I will never tire of talking about Oscar. I would never want to give up re-reading and remembering his story, it’s just sometimes it takes me more time than I expect to find the courage to do so.
April 4th 2014 was the day Oscar’s had open heart surgery. The day started with a plan to do a procedure where a catheter would be passed through Oscar’s groin to his heart. The plan was to essentially open a hole between the top two chambers of his heart and to add some bands to his pulmonary ateries, both of which would hopefully allow his heart to work more effectively. In typical Oscar fashion, he didn’t follow the plan.
We spend the day waiting around and when we finally got that call to say the procedure had been completed, we were then told about the complications. During the procedure, Oscar had a Cardiac Tamponade, which resulted in him having to have open heart surgery. I know that he had a blood transfusion in theatre, what I don’t know is whether his heart actually stopped and just how close we came to loosing him that day.
When Oscar came back from theatre he was on a Ventilator and surrounded by tubes and wires. I’ve said before that I was actually scared to go near him at first. If i’m honest, i’m not sure that I actually recognised him as Oscar. I don’t think there is any amount of preparation that you can do for seeing that much of a dramatci change in your baby in just a few hours:
When Oscar came back from theatre it was also the first time that I felt we had the right to be in the PICU. That seems like a strange thing to say, but before that, Oscar just looked so much healthier than the other babies and children.
April 4th was also the last time we saw Oscar without sedation. From the moment of his surgery until he died he was kept sedated. As the days past, this was reduced and he became more alert, but he was never as alert as he had been at birth.
I had to wait until April 6th before I saw Oscar’s eyes open again:
and to have my first post-surgery cuddle with him:
The more Oscar was weaned from the medications, the more comfortable I became around him. This was probably because I was becoming used to the whole PICU experience, but i like to think it was at least partly because we were seeing some of Oscar’s personality, like him grabing at things he shouldn’t touch:
As the days went on I also starting taking more photographes. I’m not naive, I know they aren’t the prettiest to look at. I know they show a very sick baby, but they show my baby. There never became a point where I didn’t see those tubes and wires, but there definetly became a point when I accepted they were part of him. Take the photo above, most people would see the ventilator first; I see those tiny fingers holding that label.
April 7th 2014 was the day Oscar was supposed to go back to theatre, to complete the operation that was started on April 4th. That didn’t happen. Ironically, for the baby with the heart defect, his heart was actually stable. It was his kidney and lung function that prevented that second theatre trip. We were now playing a waiting game to see what Oscar had planned next.
By April 8th the likelyhood of Oscar being able to go back to theatre was dimming and so while that was bad news, the postive side was that Oscar’s level of sedation kept being lowered so he was more alert.
It was the day we discovered “Oscar hand”, which is what we named the strange ways he liked to position his fingers:
April 8th was also the day that Oscar became “baby Superman” a nickname that stemmed from socks bought by his Grandad:
which got comments from everyone. Actually Grandad bought several pairs of socks, but these were my favoutites. It should be noted though, that as cute as the socks were; Oscar’s superpowers were all him!
By April 10th we were still playing that waiting game, and Oscar chilled with the cuddly friends that seemed to be multiplying in his bed:
On April 11th we were moved to another bay in the PICU. It was a procedure and a half and there was a complex plan in place to move the 30 meters across the room (mostly because Oscar had to be disconnected from his ventilator and a member of staff had to use a bag to manually ventilate him. This is actually the one plan that Oscar actually followed, even if he showed suspicion beforehand:
And, that gets us up to date. My old posts from last year have much more detail (and probably more photos as well) but above is kind of the short version.
In an earlier post I planned to do 23 brave things #4oscar in the month of April. I still plan to complete them, bit since i’m planning some of them to be a little bigger than I orginally imagined, and would like to involve other people (they may not know this yet; watch out family!) I will be extending my time frame. Still, I guess that seems fitting since Oscar never followed a plan either!
Oscar's Story 