There's no place like home!

We finally left the hospital about 7pm...maybe a tad earlier but I don't think so. I knew we had a very excited little girl waiting for us at home who also needed to get to bed for school the next day.

His hearing test before we escaped.

I so remember wrapping Jules up in his pram suit and tucking him in the car seat. I felt so very proud we were finally going to have a proper new parent moment. Everything else had been so wonky and about face.

Roger loaded the car as we seemed to have a whole lot of stuff from our long stay. 

I and I know Roger did felt very emotional...emotional as we handed back the key to our room that we had been staying in and emotional as we went and said goodbye to everybody. I did not want to do this as I just wanted to slip out as was not sure I could face everyone. People said how well he had done and I felt so strange. We said goodbye to lots of the other parents too wishing them well with their little (some very very little) ones.

Finally we were heading for the door, finally we were going to break free.

I think I cried the whole way out.

Very very proud daddy with his boy.

We had one last laugh and chuckle at the willies sprayed onto the ceiling of the lifts one more time. I remember looking at thes the night I was wheeled into this hospital and thinking how awful someone would spray onto the lift in a maternity hospital. It took me a number of days and looking at it from a different angle to realise they were winkies lol

Finally...our little fella smelt fresh air and had a breeze on his face...he frowned bless him.

We felt like we were stealing him. I love these pictures of Roger.

With the car loaded and Jules strapped in we headed home. I cried as we pulled out and stared at Jules the whole journey home not believing that he was coming with us. It was a moment I had not really dared to believe would actually come true.

The kids were starving as we had tried to order some food from Sainsbury's delivery the day before but they would not deliver it as Roger had not made it back in time so even though there was begging and pleading they took it away again...who'd have thought sausages and some pizza's etc would be so dangerous for a 17 year old!!

I dialled and ordered pizza to be delivered so it would be there when we got home....forward planning and all ;)

When we got home we got him inside and then did pretty much what I have done with all my other babies and that is plonked him down in his car seat and thought hmm what on earth do we do with him now. Everyone wanted a cuddle but he was asleep an the pizza turned up so I issued some threats about waking him, we ate the pizza and then let everyone have a cuddle. It felt so strange finally seeing him at home.

I had prepared his crib a week or so before I had him so it was all ready to go, waiting under a sheet to keep the dust off (paranoid mum). 

I can not even begin to tell you how utterly fantastic it felt to sink into bed that night. To feel the comfort. Those hospital beds are so flat and awful. The feel of the duvet after hard starchy sheet was amazing. Even using our own bathroom...all those things you take for granted.

I was waking Jules every 3 hours at this point even through the night till we knew he could take larger amounts to maintain his blood sugars so not entirely sure we had more than little sleeps in between feeding, changing and getting him back to sleep.

Waking the next morning to our gorgeous boy in his crib was a dream come true. What else was there to do apart from bring him into bed for a snuggle with mummy and daddy before his next feed and of course a fantastic photo opportunity.

During his time in NICU Jules underwent a lot of things....my next post will be all about that. I haven't finished, I have lots more to write about it all....aren't you all so lucky lol xx

After Jules woke from his brain cooling....

I seem to recall the reaction was one of shock that he had woken up. It was one of lots of excitement from Daddy and myself for sure. I think we were both very excited that he seemed to be acting like a normal newborn...all blinky eyed and hello world.

I was so very worried if he went back to sleep he may never wake again. He was awake for about 20 minutes before he gradually drifted off again. He woke later on when I went up there and they told me he had woken a little bit and had cried like a little kitten mewing when they had moved him around. I remember hearing his first cry it was so very sweet...nothing like other newborns cries...it did get stronger over the next few days and soon became full force baby cry lol.

He had been through so much in the previous few days. He had been through blood transfusions and the full intensive care package. He had IV lines in his feet and his arms, he had blood taken and things done with his cord stump. It was never clamped with one of those plastic pegs. It had scissor clamps on it at first and then they sewed it up with what looked like darning thread. In fact he was about 4 weeks before his little cord stump fell off. I did not think it would ever come off. He has a little sticky out belly button now bless him.

I do not even know the emotions I had gone through those days of sitting by his incubator. I know I would quite often go up there in the middle of the night and sit with him and talk to him and beg him to come through all of this (before he woke and was still being cooled). I remember talking to him all about New York as daddy wanted to go there for his 40th birthday that coming October. I told him all about the big tall buildings he would see, how we would get there by flying high in the clouds on a big silver plane (American Airlines) and that we would go for a walk in Central Park and he could see all the trees. That we would go on a boat ride around Manhattan and go on the big yellow boat to Staten Island and go past Liberty. I also sung to him. I sung the Carpenter's 'Close to you'. I had sung it in hospital and it pacified my 3rd child Jordan when he had to have an operation and was treated for pyloric stenosis. I sung it to Jules too but normally ended up breaking down in tears. I made a deal that if he carried on doing well I would not sing him Donny Osmond songs lol.

Hormones...ahh hormones...what a terrible thing when your baby is so ill. I was all over the place. The minute they had heard that Jules had come off the ventilator I was whisked and removed from the Daffodil room. They gave me a single room on the post natal ward. It was hard as it was of course full of happy mum's with babies. I don't know if it was because I was from another hospital but the care was seriously lacking with hindsight. Don't get me wrong, on NICU they had lovely nurses (except some of the crazy foreign night ones). The midwives were lovely but they had no time, I had no advice on anything to do with the c section, no physio advice and I know they had someone coming round as I kind of gatecrashed one about a week later but she told me she was for first day advice so it was worthless to me by then. I didn't know they did not bring breakfast round either...no one had told me you had to hobble to the other end to get it yourself and the rest of the food was the absolute worse I have ever had the misfortune to experience in any hospital. It really was slop, who would serve up lasagne with mash potato? It all tasted the same. Even a ham and tomato sandwich tasted like toxic plastic. I was more or less a ward lodger and I just came and went and spent most of my time in NICU....they lacked comfy chairs and I think that not being able to relax really did not help my recovery from the C section. I was in constant pain.

On the Monday when he was 5 days old the most amazing thing happened...I got to cuddle Jules. I can not even begin to tell you how it felt apart from amazing!! The feeling of his weight on my chest was amazing, the smell of him was amazing, having him nuzzle into me was amazing. I cried and broke down...what else could I do? I felt like I had waited a lifetime for that cuddle...well I guess I had, Julian's lifetime! One of the nurses was taking photos and she just click clicked away, we have some lovely pictures of our first time together as a family.

                 

Click here for a video of Julian from his first day awake.

                 

A blog from me and a blog to read...emotional xx

http://missingliam.com/

I came across this ladies blog last night and read it all. I saw the link on a facebook page. I knew I should not read it but I have this theory that in a parallel universe I did not get to keep our Julian, that we lost him like this lady did. I have been sobbing reading this blog and have had tears just streaming down my face the rest of the time. The way she describes things, I could picture myself there and us with Jules. I felt each emotion that she has written but unfortunately right away reading it from the start I was screaming inside this is another negligent hospital birth and my heart was aching for their family. Each woman who has lost a baby is a hero to me. Those that can even maintain some function are super hero's. I fear I would not have been brave...but you have to carry on, you just have to keep going, especially if you have other children. I feel like a fraud feeling so depressed and stressed still almost three years on at what we went through, sometimes I feel it does not get easier. I think that is possibly due to the legal case and having to read and re read and re think about everything. I long for the day that it is over and we can really file away not only the paperwork but also the painful raw memories as well, draw a line and get on with it but like I said I feel a fraud...I torture myself at times looking at pictures of lost angels and reading stories it is almost like I have to and need to go through that pain...maybe it is therapeutic to me in that I can compare that maybe my experience was not as bad and I can tell myself off for being a silly little girl over it all. I also feel I want to honour these women and their lost babies...they have put the story and pictures out there on the internet. They are proud of how they have coped I am sure...maybe not, maybe they just want their story heard especially in negligent cases but they are as equally proud of their beautiful babies they created, grew and gave birth too and want to share with the world their beautiful children just as they would have had what happened not happened so if I can honour them by taking the time to read that and understand what they went through let alone make a supportive comment it is the least I can do....anyway it has prompted me to share some of what we went through emotionally and thinking wise. 

I struggle to understand what I feel still. I am trying to work it all out. I have had some very bad times recently and I believe it is because we are again creeping towards his birthday and thus the anniversary of it all happening. His birthday whilst it should be happy is not maybe as happy as it should be for us. We do our best, and made ourselves so busy on his 2nd birthday last year at the time he was born because on his first birthday I glanced at my watch in the school playground whilst picking up my daughter and realised it was 3.19pm and the time that Jules was born...he was stillborn...the notes say that he was stillborn...he was revived though...still makes it hard emotional work for me personally and I fell apart.

I do not for one moment know where or how to describe the real raw emotions that Roger and I encountered when we went through Julian's 'birth' (I always say it like that as I do not feel he had a birth, to us his birth came the day he awoke from cooling).

http://julesleyster.blogspot.co.uk/

That is a blog that I started for Julian a while back...I struggled with it and could not face the rest of it but it gives some insight as to what happened that day and before and the history of how we got to where we got to here.

Following on from that where the story stops in that blog, Jules was born in a terrible state, described as 'dusky in colour'. He was stillborn and had apgars of 0,1,3. He had no heartbeat for a total of 31 minutes from when it was lost inside me to when after 18 minutes of CPR they got it back...very slowly and faintly I might add. He had the full intensive care package...every line in, lines out....I have since read if you have more than 4 lines then you do not have a hope of living...he had 5 going in. 

We are lucky in that we walked out of the hospital with a live baby 13 days later. My heart goes out to any woman who has lost a baby but to lose one through negligence, to know your baby should be there and that something could have been done, to know that someone or something be it one person, a host of problems or hospital policy caused you to lose your baby must make it worse and it makes me so very angry, gosh knows what it must make the parents feel. I think Liam's mum has kept her cool very well so far from what I have read although she often says she felt bad for writing nasty letters...they were not nasty, certainly not as nasty as the things I want to say to Julian's consultant and the hospital that he was 'born' in.

Some may say my mind is always very messed up and they would of course be correct. It is messed up very much so from losing my mum when I was ten years old so maybe having lived through that trauma is why my mind has worked as it has over the past almost three years.

I constantly look at Jules and feel utter wonderment...who wouldn't, he is our miracle, he is a medical conundrum as we have been told many a time BUT there is part of me that wonders if we had have lost him, what would we have felt, how would it have been...it is almost like I have to go through those thoughts and mental process as part of the healing. When I was seeing a counselor about it all she seemed to think that it was a very understandable process, after all the parents who do lose a baby no doubt go through those thoughts in the polar opposite way...but again, I have my baby, it makes me feel so very guilty and so very wrong....selfish...

....but it happens. My mum is buried close to and with in easy eyesight of the baby and small children area of the cemetery, Roger's cousin sadly died last year and when we visit the two graves we have to walk past the baby area. Plus for whatever reason they seem to have buried about 3 small coffins right across the very small path from my mum. I smile in some ways as she loved children, she was a childminder and the children she minded have fond memories of her so I feel they are close by to her for her to take care of...she was buried long before they created the baby section close by...but with the thoughts I have it is so very hard to see these small graves so close by with no way of avoiding them if I feel really weak.

We were told that Jules would not make it through the night, that he was so very poorly and would not stabilise enough to be moved, in fact the NICU retrieval team from the level 3 hospital he was transferred to were waiting around for a number of hours, in fact it has since transpired that the brain cooling and total body cooling that he had may not actually have been of any use to him because he was on the very brink of the 6 hour limit to start it by the time he was able to be moved....which as they say makes him even more of a miracle.

This was taken by one of the midwives, he was still too ill for Roger to see, he was in a very bad way here.

I had been left alone a fair bit in recovery that evening what with Roger going up to see Jules in NICU a number of hours after he was born and more stable and then I sent him off to follow Julian in the ambulance because if he was going to die then I needed it to be in daddy's arms or with daddy close by as I could not be there due to the C-section. I did not want him to die alone surrounded by strangers. I know Roger did not want to leave me as he was worried about me but as I said I am ok, please be with him...so off he went and I was alone.

 We both felt very very very alone, eventually my elder daughter Natalie who was 21 came to be with me and that was lovely and I will be forever thankful. It must have been so hard for her to see mum in such a bad way and she was worrying about her baby brother too but before that I was left alone and when left alone your mind wanders. 

Whilst laying there I planned what to do if we lost him.

I am not a tattoo kind of a woman but I planned to have one on my wrist where I would always see it. I also knew I would have one somewhere more personal of his hand or footprint.

I do not like those re born dolls but had a strange thought of having one re created to look like Jules. I also had a thought that maybe his ashes could be inside it...ok now I feel that is a bit strange but at the time, my mind was not working as it should obviously.

My family has mainly been buried, my mum is my nan is...people I have loved and lost have been buried, I am scared of fire so cremation scares me but there was something I felt that I should have him cremated so we could forever keep his ashes with us wherever we went...it is one thing that makes me scared of moving from the area that if we move I will not be within driving distance to visit my mums grave.

Then I thought of songs...what songs do you play at a baby's funeral who has not 'lived'? Two songs mainly kept going round and round in my head and being a Donny Osmond fan, one was Twelfth of Never and the other was a lesser known Donny song called Never Gonna Say Goodbye...my heart still aches when I hear it, I felt that although a love song so many of the lines hit home...

Donny Osmond singing Never Gonna Say Goodbye.

Somebody lied to me
It just can't be
You can't be gone forever
Somebody got it wrong
You were gonna love me
All my life
Weren't we good together
Now I'm on my own
And I don't think I'll ever
Learn to love one day alone
So I'm never gonna say goodbye
Say goodbye is something
I can't bring myself to do
Cause as long as
I don't say goodbye
Darling, I know
Part of me will
Always be with you
What am I gonna do
Having you was all
I ever wanted, wanted
Where am I gonna go
To feel the way I felt
Inside your arms
Still, my life is better
Loving you as I do
Thanks for being with me, darling
Thanks for being you
Whoa, I'm never gonna
Say goodbye (say goodbye)
Say goodbye (say goodbye)
It's something I can't
Bring myself to do
'Cause as long as
I don't say goodbye
(Say goodbye)
Darling, I know
Part of me will
Always be with you
Oh, I'm never gonna
Say goodbye (say goodbye)
Say goodbye (say goodbye)
It's something I can't
Bring myself to do
'Cause as long as
I don't say goodbye
(Say goodbye)
Darling, I know
Part of me will
Always be with you

See what I mean? they kind of fitted so well for an infant loss.

There were two other songs....Michael Buble Just haven't met you yet...because it was a song that reminded me of my pregnancy and I did a scrapbook page using some of the lyrics as titles....but I am not sure it fitted as well plus there was Eric Clapton Tears in Heaven. I am sure I would have gone for the Donny one above...it makes me cry now still and takes me right back.

I also planned that no one else would be there at his funeral. I felt that it would have been too personal for anybody else, it felt like our experience. We both feel our relationship has always been about us and that people did not believe in or understand us so that degree I felt they would have not maybe understood what we were going through. I would not have wanted my other 4 children to see their mum so utterly broken down and I felt that Roger and I would have been able to be ourselves and concentrate on only each other. I knew Roger would have wanted to carry the little coffin but I also knew that I wanted to be there with my arm linked in his as he did. Together as always we are strong xx.

I planned in my mind what I would write in a letter to him, I planned to sell everything we had purchased for him and use the money and beg borrow or steal money for us to run away to somewhere like New York where we could walk the streets and escape our reality, where we could lay in bed all day and not have to worry about the children, where if we were hungry we could call room service...where we could just escape but most of all it would give us about 7 hours flying high in the sky with the clouds, and maybe I do not always believe in God I still guess I subscribe to the line of thinking that you end up 'up there' (or down there but our sweet boy would be up there).

I made deals...my mum died when I was ten and she often comes good for me....I feel she looks out for me. Every man that has ever treated me badly or hurt me has had a car crash or lost his job or both...don't think that any of the ones who hurt me have had a very good comfy life since...we joke about come on mum give us a parking space when driving round a busy car park or the town and bang she always gets us a good one, well I made a deal with her that if she gave us back our boy we would not ask for a parking space again. I was also worried that my mum being such a child and baby loving person she may want to keep one of her grandchildren to herself up there, to care for and look after but obviously and thankfully she could not cause me that pain and hurt.

Then there were all the other thoughts too...how will I cope with seeing my boy dead? How will I cope with having to maybe cuddle him as he dies? Oh my gosh what if we have to make a decision to stop care or switch off his life support? I can't do that. My fear like with all parents has of been losing my child. I also know lots of people look towards having another baby. Not to replace but I think to give them a reason to live and carry on...that certainly would have been what I would have felt I wanted to do but I knew I could not ever risk that pain again. I was an older mum (38) we had a high risk of down syndrome at the nuchal scan (he did not have that, we decided against further tests apart from a few in depth scans..our theory was that down syndrome was not a good enough excuse to terminate unless there were lots of heart or serious health issues). I suffered bad sickness and SPD and gestational diabetes and could just not do another 40 weeks of pregnancy (this was my 5th)....so I felt kind of lost in a plan to get through the coming months. I think having experienced the pain of losing my mum I knew I needed a plan to cope...being practical and all that...you sure do think strange things at times like this. My plan was to lose lots of weight and then lose myself in my job. I had been working as a travel agent and before that for an airline in customer service, so I planned to go back to an airline and apply and hopefully be accepted as a flight attendant and would fly the world and hopefully be too tired and jet lagged to get too over emotional.

I then started getting text messages from Roger, he was at the hospital, that the baby was in a very bad way, that they didn't think he would make it through the night etc. The plan was that I was still in recovery and would not be moved until at least the next day but then I got a text message that said 'they have asked do we want him baptised' and at that point I knew he did not have a lot of hope. I pressed the call button and showed the nurses the text and said please get me there as soon as possible I need to be there. They contacted the hospital where Jules was, they had space for me and accepted me as a patient. Next they called an ambulance to come and get me. I just wanted to be with Roger and be with our boy. I knew Roger was alone. I toyed with the idea of calling one of his friends to go and be with him but the closest one in distance had let us down badly recently so felt I could not.

The ambulance trip was a bit of a joke in itself to be honest. I was in so much pain. I had not been given pain relief and have woken up from the operation in so much pain that my first words were 'pain, pain big pain' the pain I was in still haunts me to this day. They then had problems getting me to be pain free and resorted to gas and air...it numbed me. To be honest I felt so high and out of it, it was far more use emotionally than for pain relief. I got through 2 canisters in the ambulance and was so high on that and morphine that every time I tried to take a swig from my bottle of water I managed to spill it down myself and ended up laughing but felt the young lad and woman thought I were crazy for laughing the day my baby might die. I felt every bump on the ambulance trip and we were apparently going about 80mph to get me there according to my daughter who followed the ambulance till she turned off for home.

I was wheeled into an 4 bed observation ward on the labour ward that they have by the nurses station to watch the c section mums for the first day but the first thing I saw as they pushed me into there was a happy mum cuddling her newborn and it was only then I broke down and became totally hysterical, big sobbing cries and I could hardly get out what was wrong. I remember saying you are all telling me my baby is going to die I can not be here. I feel so sorry for that lady, it was not her fault but I heard them arranging for her to go down to the post natal ward as soon as possible and I think she was glad of that to be honest....so there I was alone.

When we arrived at the other hospital they offered for me to call someone but I did not know who to call, they said I should not be alone and they would go and get Roger. I had a text from him before I got there saying they were giving him a bed in the parents rest area and I did not want him disturbed as he had been up and to work very early that day....silly really because he could not sleep and was worrying about me, where I was and did not know I was only around the corner.

I asked for the gas and air again and was given it. I was in pain, more emotionally than physically I think...it numbed me, sent me to sleep...I kept drifting off and would take a few more puffs till I drifted off again. 

I was disturbed all through the night. I had the NICU nurses come round to introduce themselves and they asked me if I understood how ill my baby was...yes I said...I could not get there to see him as I was not allowed out of bed and the bed would not fit. I had seen him very quickly as he was wheeled out to the ambulance at the other hospital. I had doctors who asked the same thing, I had midwives...I had the retrieval team doctor come and ask again, all people kept asking me was do I understand how ill he is. One of the most wonderful things happened during all of this. A lovely nurse came and said she needed to rub cream in me to make sure I did not get bedsores and she rubbed my back and hips, it was so wonderful to feel some human contact that was gentle as all day I had felt pushed around and hurt. 

I had asked the NICU nurse for a photo...I kind of thought they normally bought one round for you and she did go and take one bless her. I laid there with the photo on my chest all night. Every time I woke I would pick it up and look at it in disbelief and give the picture a kiss.

It was a long night, the lights were on bright, I was in pain and was only napping when I got so high on the gas. Eventually around 6am suddenly there was Roger. I was happy to see him and yet so scared he may be bringing bad news. I had worried every time I heard someone come down the ward and asked for me. Thankfully we were told he was serious but more stable.

I saw so many people that next morning. A decision was made for me to re start my anti depressants (I had come off them in pregnancy) as I knew they took 2 weeks to kick in so I wanted to have a head start. I was moved to the daffodil room, a room so painfully obviously for bereaved parents...self contained, fridge, tea and coffee, bathroom etc you need never leave. It was at the very end of the labour ward next to the store cupboards and had all equipment stored in front of it....down the end so you did not hear newborn cries. This made it worse, I felt that they were really expecting him to die at any moment.

Somehow, I was hauled into a wheelchair...trailing all the bits and bobs you have to trail with lack of style and grace up to the NICU. I just can not even start to explain the pain I was in. I could not move my legs I had to shuffle them as I could just not lift them. I was wheeled in and I felt sick with nervousness. I was really going to meet our baby. They showed me all the hand washing routine, they explained all the beeps etc and I felt like Roger was an old hand by this stage and I was a mere visitor to a strange world.

I finally got up close and opened the incubator little peep holes. I started talking to him and said to him 'hi Jules, it's OK mummy is here now'. Our boy was heavily sedated, he was in his 'cold coma' hypothermic....yet somehow, he managed to lift his eyelids, he waved his arm in the air....to me that was him saying  'hi mum I am ok' I lost it totally and broke down in tears. No one believed us but we have the photographic evidence. He then squeezed Roger's finger as if to say 'hi dad I am strong'. He did not move like this again the whole time he was sedated apart from shaking his arms that we were worried were some kind of fit as he had been having seizures after his CPR.

We were visited after back in our room by the amazing Dr C, he and his team had worked on him the night before. He told us he was over the worse, he was still a very sick boy but more stable. They now expected him to live but that he would be disabled to a lesser or greater degree.

I sat by his incubator for the next few days wondering how life would be with a fully dependent disabled child, I really believed we would have a very disabled boy. I kept thinking that is ok I just want him home.

With hindsight I feel we were led down the path of turning off life support. Dr C worked on rotation with other doctors and it was now his few weeks off. We were told over the next few days that he had no gag reflex which I have since read is a very most basic one and that he had less than half the expected brain waves. I felt that this doctor looked at us as if we were stupid just taking this information in and we did not maybe ask more questions such as what should we do, will he not live etc we just nodded like fools.

On the Saturday morning we were greeted by the most amazing Nurse G, don't get me wrong lots of them were lovely and amazing but there was something about her positivity and her personality that really made us think there was hope. She said he had shown some signs of improvement and they wanted to see if he could breath unaided. She removed the ventilator and he breathed....he did it like he had always been able to. He never once dropped his oxygen levels...he just did it fine...our little hero!

We knew the next day which happened to be Palm Sunday was warm up day. They warm them so gradually over many hours. They started at 6am. I was passing the nurses station and there were some palm crosses and a sign saying please take one. I for whatever reason picked one up and gave it to his monkey (Marlon) to hold.

At around 4pm I went to pop back to the room before going to express milk for Jules. I do not know why but after going to the room I went back in before going to express and thankfully I did because everyone was jumping around so happy and excited because he had suddenly woken up. He was there blinking around like he had just had a big sleep and had a look on his face as if to say what on earth is all the fuss about and more to the point where the hell am I? Roger had the camera on his lap and picked it up and started recording as soon as he woke so we have this amazing moment on video.

Click here to see Jules waking up.

(to be continued)