Life as an Angel Mummy... Part 3

I think I was meant to get over his death now he had been buried. How could I? He was my baby! I had empty arms where he should have been.

We did nothing more than shut the door to his bedroom after the Police left, the day he died. We took everything in there that was in our home and shut the door. Sounds wrong but the visual reminder was too much to bear.

I slept with one of his blankets - every single night.

There was no 'How to..' guide on what to do next. Nothing felt right. I cannot even tell you what we did most days and evenings. They just merged into one.

We went to see him, every single day. Without Fail. Most of the time, I never got dressed and went in my PJs. It didn't matter, for my baby had died. I thought it was an achievement just doing that.

I never wanted his death to be in vain. When we were told about his heart condition, we searched and searched for info on the two pre-natal diagnosis. All had relatively positive outcomes. When they told us on PICU it was HLHS, I texted my best friend who was coming up in a couple of hours to see him, her boy. Said can you google it please, print stuff off so I know. She came and wouldn't give it to me. Took my husband to one side and said, you may want to sit her down first. She couldn't bear to tell me she had found one website that said most don't live past 5 years of age. I phoned her once he told me and said to her 'If I only get 5 years with him, it will be the best 5 years of my life'. Those words haunted me. I had 142 days with him. They were the best 142 days of my life.

We now know of older teenagers and children in their early twenties, living in America with HLHS, having had the surgeries.

When my boy died, we were indundated with support, messages and people wanting to pay respects so a Just Giving page was set up. We quickly raised thousands of pounds, so we did a sponsored swim and raised another thousand or so pounds. So we decided we will not let the memory of a beautiful, dear baby, just fade away and launched our fundraising. We launched a foundation raising money for the PICU that saved and tried to save him. We began arranging a charity auction night.

Somewhere in the grief we discussed whether we would have another baby, not to replace him, never could that happen. We were told that the chances of another baby with a CHD or even HLHS was slim, a 3-4%. To have one to begin with was 1-2% so imagine my thoughts!

6 weeks after my precious, darling baby boy died. 

I was pregnant.

Life as an Angel Mummy.... Part Two

So he died on the Thursday and was buried the following Friday.

I staggered my way through those 8 days.

GP came and gave me tablets to help me get some sleep. They were great stuff, except I never wanted to wake up again, for then I remember, he is gone.

People sometimes question why we chose a burial over a cremation. I am a catholic girl and always brought up with the belief that burial is normal; not that I would have been judged for cremation by myself or the family. My husband and I had the briefest of chats - think it went something like, burial or cremation and we both kind of just agreed burial. I knew if I had him cremated, I would never leave the house again. I would have him with me at all times. The FD, again, the most loveliest man, kindly suggested we go with burial as his coffin will be tiny and also, the ashes wouldn't be much and it would be more distressing. That said, we wanted to have somewhere to go.

Somewhere where it was just him, our thoughts, our feelings, he was in hospital for 7 weeks. They felt like eternity. We wanted to make the most of time at home before the next admission, we did countless things with him, going to the beach, to London, to aquariums, meeting friends, different cities - all to create memories.

But it wasn't enough.

I wanted more.

I remember feeling 'okay' the morning of the funeral, I wanted to look as decent as I could to say a final goodbye. I forewent the make-up but a friend straightened my hair and another did my nails. We asked for no flowers except family as he was so small in that coffin. We said that people could give him a rose, to lay him on a bed of roses, to quote Bon Jovi. We chose red and asked everyone to not use that colour.

My legs buckled when the door went and the FD arrived to take us to church. The very church just 2 weeks prior we had his christening. My husband wanted to be the one to carry him, I don't know where he found the strength cos I would of just collapsed! We sat in that car, with him next to us. I never took my eyes of him.

We chose personal and poignant poems and songs for him. I'll share.

Eva Cassidy's - Somewhere Over The Rainbow

God saw you getting tired, the cure was not to be,

He wrapped you in His loving Arms, and whispered "Come to Me" 

You suffered much in silence, your spirit did not bend,

You faced your pain with courage, until the very end. 

You tried so hard to stay with us, your fight was not in vain, 

God took you to His loving Home, and freed you from your pain. 

A golden heart stopped beating, two working hands at rest, 

God broke our hearts to prove to us, He only takes the best.

Faith Hill's - There You'll Be

Although your body we cannot hold, it doesn’t mean you’re gone.

This world was worthy not of you, God chose that you move on.

There is a pain within our souls, what we were forced to face,

You have our word, you’ll feel our arms, some day we will embrace.

We hear that it was meant to be, God doesn’t make mistakes,

But that cannot soften the painful blow, or make our hearts not ache.

There’ll come a time, we promise you, when we will hold your hand,

stroke your face, and kiss your lips; and then you’ll understand,

Although you briefly breathed our air, and gazed into our eyes,

That doesn’t mean you’re not with us, an Angel never dies.

G4 - You'll Never Walk Alone

I cried the whole way through the service, he looked too small to be in a coffin. I didn't realise how many people loved him or us until we walked out. My husband carried him and out again. 

The poignant thing when we got to the cemetery was the location. When we discussed the cemetery with the FD we went up their after to see if we could see where he would sleep for eternity. We walked all around that damn cemetery and was unsure.

The one part of the cemetery we didn't go to, not that you could miss it, and that was the part he was to sleep forever. My little man was already playing tricks on us.

I lost it when they lowered him in. I had to be pulled back as I want to go with him. He is my life. How on earth was I going to live with out him. It began to rain and the FD gently said they needed to cover him over before it got too muddy.

I told him I would be back tomorrow.

Life as an angel mummy... Part 1

I read somewhere that you become an orphan when you lose your parents but when parents lose their child there is no word. There is nothing to encapsulate how you feel.

I held on to him for hours after he was extubated. I would just sit there and go into my own little world and I would forget that I had my dead baby in my arms. I cried every time I realised he wasn't asleep, he was dead. Dead, what a horrible, horrible word. I let go of him when the doctor came to certify that he had died. We took the opportunity to dress him. The nurse gave us a white sleep suit for him and said we could bring him one of his if we wanted. I wanted. My husband went and did the phone calls, I am incredibly proud of him for being strong enough to do it.

We had to have the Police involved as he went downhill at home but there was nothing suspicious they told us, routine. The poor detective had a hard time comprehending the medications he was on and said to me how did I remember it all and I said it was imprinted just like his DOB and Hospital Number was. They said they had to come and take pictures of where it happened at home. I remember feeling violated as I just wanted to stay with him but I couldn't and in the grief I found it hard to digest it all. I also didn't want to have to face the 'outside' world, family, friends, strangers.

My baby had died, why was life still going on. My baby had died.

We left at some point, mainly because of the Police. I wanted him to have his own PJs and his teddy that he slept with. If he was going to go to sleep forever, he needed his teddy. 

I saw my boy every day at the mortuary and held him for the last time on Sunday 4th October 2009. 

We were told his PM would be the Monday and they were unsure if we would be able to see him again, let alone hold him so we knew this could be it. Hats off to mortuary staff, I couldn't do it. They gave us as much time that we wanted and when we asked if it was okay to pick him up, they gently told us, he was our baby, we could do anything we wanted. I wanted to grab him and run but I needed to know it wasn't my fault too.

I wasn't prepared for him being cold, I knew somewhere in the process he would be but it was a shock. It was nice to hold him again, my arms ached to have him there. Apart from him being cold, I was back to the time after he just died and going into trance like states. My husband picked him up and cuddled him into him. He was wearing a white t-shirt and when he moved him away, there was blood. I forgot and said he had hurt him but it is normal for that to happen. He didn't want to ever take the t-shirt off nor wash it. It was the last biological thing of our boy. Its in our boy's memory box now.

In the process of putting him back to 'bed' he got blood on his PJs too :-(

The Police had promised me they would call me when the PM was done; to give me the verdict and so I knew that the Funeral Director was collecting him. Speaking of FD... he was lovely, such a genuine, kind, caring man. When we saw him for the arrangements, he told us he always left the light on for his guests and said good night to each and every one of them. I felt that I was going to have my boy in very safe keeping.

The PM didn't take place on the Monday and was hugely distressing for us as it meant we could have seen him but the coroner ballsed it up (NB: The FD put in a complaint after the boy was buried). His PM was done the Tuesday morning and we were called in the afternoon.

The verdict.... he died of sudden cardiac arrest, brought on by his condition, HLHS. No ones fault. Cause of death recorded as Natural Causes. I hate that phrase as it doesn't give a true description. To me, natural causes, is a 90 year old pensioner having lived their life and just simply passing away in their sleep. How is it natural that my baby, and he was a baby, died?!

Life Changes

I never wanted the life that was now dealt to me. I love my boy so very much. He is my world, my universe. He fought so hard, why o why did he have to die?

Being with him was the only thing that made me happy. We tried to make life normal for him and us, if you obviously take away the fact he was on so many different medications and we did have to be careful after all, he had a rare heart condition.

I can recall that morning so vividly. Have you ever seen that film 'Click', the one with Adam Sandler? In it there is a scene where he learns his dad died and he rewinds and pauses continuously. That is me, rewinding, taking it all in again from a third person perspective. Except I can't pause it, I can't pause it to stop what happens next. Nor do I get a second chance. I so wish I could, but what could I change.

You see it all happened so quickly, from the moment he went downhill. When we were being prepared for discharge from the hospital they gave us CPR training. It was unspoken but between me and my husband, we knew, he would be the one to do it, if we needed to. We knew I wouldn't be strong enough. How ironic that 13 weeks after that training, after the unspoken conversation, it is me that is the strong one, it is me who is giving him CPR. I was on the phone to 999 when he went floppy in his daddy's arms, but he is the one who crumbles.

On the one hand I knew he was gone as I was watching myself perform CPR on him but I didn't give up on him in the beginning so I wasn't about to give up now. I asked the first responder when he turned up if he was breathing and he said 'Not right now my love'. Strange how that stays with you. He told me I needed to get dressed whilst he took over CPR, I forgot I was still in my dressing gown following my shower.

My husband and I sat in the ambulance as it blue lighted it's way to the hospital. Both staring at the heart monitor and the fact that every time they stopped heart compressions there was a flat line.

They tried to sit us in a relatives room but quickly knew I didn't want to be apart from him. I was sat on a stool to one side whilst they worked on him.

I didn't know what to expect when I went in to resus. In a bittersweet moment, it was nice to see the PICU doctors with him, in them I trusted. One of them sat with us. Again, ironically, she was the only one who could get a line in him when he was in PICU.

I sat there, watching, listening, silently screaming alternative sentences 'stop, leave him alone' and 'bring him back to me'. I calmly turned to the doctor and said he's not coming back is he. I think everyone heard me say it even though they were busy. They explained, that they were able to get a slight rhythm back but it wasn't enough. The pH levels showed if they could sustain it then he would have multiple organ and brain damage. I looked at my husband and again, unspoken words were said.

I asked for him to be put in my arms. They disconnected all the tubes etc, placed him in my arms and extubated him.

10.50am on Thursday 1st October 2009.

I am an angel mummy.

A heart mummy

It felt no different as I knew no different. He was taken straight away from me, he was quite poorly by all accounts. Me? Well I went into shock and didn't quite come to for a few hours.

They took him to NICU after I was allowed to stroke his face. None of this straight up on to mum malarky you see in all the pregnancy programmes.

I saw him when he was 24 hours old, he was in PICU by then. He had emergency heart surgery at 12 hours old. I had been on bed rest the previous 24 hours and fainting whilst trying to get in the shower meant a blood transfusion and only then was I allowed to move.

What did I see when I saw him? My beautiful, precious baby boy. I didn't see the various different wires or tubes coming out of him, I saw him. I saw my precious boy who looked so much like his daddy.

We spent 7 weeks in hospital and he had further surgery at 5 weeks old. It became home and was daunting leaving but we almost ran out of there, scared that they would change their minds.

Whilst we were discharged with a list of do's and don't's and lots of medicines, life settled into a good routine, despite the endless appointments with health visitors, hospitals, nurses.

We knew no different

There is a point to this, I promise. It takes a while to understand why I am telling you all this but in the end it will be clear you may have to come back and read this again.

Just as we get complacent,
life changes again.

I
become
an
angel
mummy

:-(

Becoming a first time mummy :-)

They say that a woman becomes a mum the minute she finds out she is pregnant and a man becomes a dad when the child is born.

I found out I was pregnant in September 2008 after 3 long months of trying. I always wanted to be a mummy you see, never really had any other aspirations, just wanted to be a mummy and here I was, a mummy, to the smallest thing in the world; but it was my small thing, one half me.

I had a relatively easy first trimester. I was tired a lot, it didn't help that I had literally just started a new job. I always felt sick but was never sick.

In January 2009, we (my husband and I) learnt at our 20 week scan that our baby (which we found out was a boy) was going to have a problem with his heart. Minor they said. One small operation and it will be fixed. So they said. They named it Coarctation of the Aorta. They also said it may be a sign of a chromosome disorder called DiGeorge's Syndrome or 22q deletion. Funny (not as ha ha but funny - weird), that now, as I look back, I think I was more upset about the chromosome disorder than the heart problem. Maybe because they said they could fix the heart.

A repeat scan at 28 weeks showed that perhaps it was more severe with something called Aortic Stenosis and possibly the first one too. Repeat scan booked for 36 weeks.

As the 36 week scan came around, I remember feeling fed up, feeling huge and that I had had enough of being pregnant. I was going to that appointment with the bags in the car... just in case they would induce me. After all, I am hugely emotional and pregnant.

The bags came home again. The heart function had changed again. They were going to discuss inducing me as the scans were showing he already was a good size.

I got the call the following morning.... I was being induced in 4 days time! Yipppppeeeeeeeee!!!! Going to meet my boy!

I was induced into labour 3 weeks and 2 days early. I had a show the night before and the first examination showed I was already 1cm dilated. 22 llllooooooonnnnggggg hours later, epidural and forceps, he was born.

I was a mummy :-)