That Newborn Smell...

When I had Natalie I was only 17, it was 1989 and there was not as much written about how to bond and all the fluffy sweet stuff about having a baby. Everything was still very much practical information. I remember the night she was born cuddling her and the lovely the smell of her head, getting a giddy feeling when I smelt her. I remember very guiltily admitting this to a friend a while later and she admitted the same. Of course now, we all know about the newborn smell and how it appeals to us their mummy's and how it helps with the bonding etc.

As most of you know, Jules is my 5th baby but oh my gosh, the scent from him was so very strong, far stronger than any of my other children. It was animalistic almost. When I had cuddled him I could smell him all over, so very strong. Even with all the hand washing in NICU my hands constantly smelt of him, my clothes, my hair...everything. Even Roger said he could smell it so very strong on him when he got home. Am I silly that I kept one of his babygro's in a zip lock bag unwashed from that time? I have had the odd open of it and deep inhale and it takes me right back. I wonder if other mums who have had babies in NICU have noticed a different/stronger smell from their babies who did not need NICU?

By this time Jules was day 5/6. I had been trying to express for days and days. I was getting small amounts and that was fine for the first day or so when they were only giving him a few ml's per time to see how he tolerated it but soon he needed more. I remember my heart in my mouth when one of the nurses approached me and asked me if I had considered....and I was so scared for the next line because I worried she would say donated breast milk as this hospital ran a breast milk bank there whereby mothers with excess milk could donate it to the babies of mothers who were struggling. Now this is a personal choice as to if you ever choose to go down that route but personally for me I could not handle the idea of another woman's bodily fluids going into my baby. 

I personally do not sign up for the breast is best policy. I sign up for the whatever is best for mum and baby policy so it was with great relief that the nurse said have you considered formula milk because Julian is a large baby and he needs extra milk now as he is tolerating it so well.....phew...!! 

I think the way she said she was maybe used to mums saying no, I certainly saw relief in her face and body language when I told her I had Aptamil in my hospital bag ready as the hospital where he was born did not provide it and being a mum of larger babies the last of which wanted feeding 20 minutes after being put down constantly and I was hallucinating with tiredness I was prepared for another way.

Now I know that the whole breast is best versus formula is such a rugged topic but it is personal choice. I had been pumping every 3 hours and there was nothing there...I think the trauma of it all had totally caused something not to happen....even when Jules was able to wear clothes and I would take a worn item of his with me and I would inhale the smell of him...even when I stopped pumping I did not feel the milk there so much which was a shame as I had fully intended to be a real proper daisy the cow and feed Jules by expressed milk. I had researched it, and purchased all the equipment ready. One reason I had opted for expressing was because whenever I had breastfed my other children I could feel the energy draining out of me and would go into some kind of deep sleep...my ex husband found me slumped over Jennifer one day, thankfully he had only popped to the shops and was home quickly but I was totally out of it. Even more strange was that I was sat on the edge of the sofa in a fairly tense position as I was holding her under my arm. I decided by expressing if I fell asleep over a breast pump the baby was safe and Roger could also help take over....but then anyway when Jules was born so ill nature took over and I could not wait to feed him close to me but he had no reaction to me, we worried about his suck reflex and indeed from day 5-13 we were in hospital trying to get feeding sorted out for him as he had a weak suck, very lapse on one side and he could not tolerate large enough formula feeds to keep his blood sugars up so he would never have coped with getting enough breast milk in him and working at sucking on me and in fact we ended up resorting to using Infatrini, a higher calorie special prescription milk....it was the only thing that kept his sugars at a normal level and he could have the smaller volume feeds of this.

I can't even begin to tell you the stress this caused me. They kept trying to feed him by the bottle and he would get tired so they would then put the rest down his tube, then three hours later they would want me to wake him and try to feed him again but he was not hungry due to the large amounts they were putting down him. I think whilst the weight to feed ration is needed for teeny premature babies, using that formula on full term babies does not work. They wanted me to put 4 fl oz down him and I am sorry but no baby of mine has ever drunk that much at a week old.

The end result was he was constantly being sick, he was unhappy as he was so full and the minute you moved him he would be so badly sick. His little eyes looked so scared and I was petrified. I knew, call it mother's instinct that this was wrong and I felt no one listened to me, he was just not getting hungry because no sooner had he been sick they would fill him up again.

Jules totally stuffed full and not happy.

It was only when I totally broke down one morning when he had been sick again and they were trying to send me home and I felt there was no way I was leaving him when it was a silly feeding issue. In the end we had a mini conference with a head nurse and another nurse and agreed to feed on demand. It was only then when he woke for his feed and he did take more than he had ever had of his own accord but by checking his blood sugars we realised there was this issue and they agreed maybe is stomach could just not tolerate the large feeds versus what he needed to keep his sugars up that we changed to Infatrini and suddenly his sugars were fine.

During his time of trying to sort his feeding out he had his first bath. It was the Sunday so he was 11 days old. The nursery nurse was besides herself with excitement. It was Easter Sunday, we had dressed him up in a cute duck outfit for easter and I as very touched there was an easter card for him from all the staff by his bed that morning. The nurse was wondering how his hair would be after he had a hair wash. Jules had been born with approx 1 inch of dark hair all over...the money was on it going curly......

Jules the easter bunny xx

Jules asking has she done this before?

...and it went all fluffy and curly lol 

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)

Donny and Marie

Well I have to blog about the shows....what more can be said, totally fantastic!

My little girl Jennifer was totally made up that Marie spoke to her and asked her old she was at the Cardiff show, she joked with her about not knowing who she was and told her she was Cher lol...oh she knows who you all are lol.

Marie pointing out at Jennifer.

Jennifer was obviously feeling braver than the last time she met Marie at a VIP in Las Vegas 4 years ago. She was so upset last time she cried afterwards that she got shy as she was so excited to meet them...she still gets upset she didn't talk to them and would love another VIP to meet them...she would chat chat chat now lol. Maybe we will get to Vegas again whilst they still have their residency there, we missed them this December just gone when we went to get married as they were off doing their Christmas shows.

Jennie meeting D&M in Vegas on my birthday 9th October 2008.

Marie even offered Jennie to try her shoes on..she should have, they were lovely leopard print ones :)

I have slowly broken down half the family to love D&M, Jennie loves them, Roger loves them and wants to go to more and more shows (we would but can't due to our up coming honeymoon). I made a promise to Jules when he was born and was fighting for his life in the incubator that if he carried on getting better I would not sing him Donny songs (I sung carpenters insteads) but I never said anything about Marie songs :), he is 2.5 yrs old and I have just about kept to my word but I can't wait to take him to his first show. I bet he would love it but need to wait longer than with Jennie who was 3 and loved it, Jules needs longer due to his sensory issues let alone mobility issues and I don't know how his hearing aids would cope...guess we would take them out.

I am not sure where Donny and Marie get their energy but I need some...Marie has bought up 8 children and can do all that and look that good. I have had 5 and am in the knackers yard lol

Just have to take Natalie with me to Vegas again and try and get her to meet the choreographer that Marie introduces...he is gorgeous and the same age as my Natalie and looks like a very lovely young man lol.

and if Marie you happen to read this when I tweet this to you..here she is please show him her photo, she needs a lovely man to adore her xx

Special needs prams...

Oh gosh, so confused. Next week we are due to pick up an Alvema Ito pram for Jules from wheelchair services. The pram is free but it comes with no extras, so no hood, no raincover, no underneath basket, no this no that...and each thing is over £100...ridiculous and seriously making money out of us parents with children with special needs.

Jules can't walk due to cerebral palsy, we have no idea if or when he may walk. There is limited help it seems and we have already been through quite a few prams trying to find one that is ideal and it has cost a fortune.

We had a bugaboo Cameleon...but he slumped in it and couldn't sit properly as he had/has weak stomach and back muscles. We then got a bugaboo bee and that was more suitable as it kind of cuddled him but alas despite them saying it should last till about 4 yrs old he outgrew it at 2.5yrs as he is quite tall and it was getting hard to get him up kerbs.

I just do not get the right feel about this Ito...the whole seat tilts and I do not think he will like that due to his sensory issues....so I have been looking again at what else is out there.

I am toying with the Easywalker after I read a blog about another mum using one for her child and even showed a picture of her 8 yr old in it.

http://www.easywalker.nl/

They look funky and look so lovely and easy to push plus are multi terrain which I do not think the Ito will be. We often go to Devon where Grandma and Grandad live so beach walks are in our life.

The other is the mountain buggy

http://mountainbuggy.com/

Similar kind of thing but more available 2nd hand on ebay so may well have to go this way.

Just need something something that is easy to push as he is 15kg or so and something that will last a while, we feel so stuck and my arms are currently aching from trying to push him in the maclaren XLR...they are not made for larger babies, I disliked them when I had my 2nd child and never went back after the one I had fell apart after 2 mths but people seemed to like them but the reality is Jules can tip this pram so easily it is a nightmare.

Feel a bit stuck between a rock and a hard place..anyone with any ideas? anyone selling one cheap? lol xx

Pretty Pink Things.

I love pink things! Pink is such a happy colour. Well it makes me happy anyway. I hate the silly campaign pink stinks where silly mothers feel their sweet girls should not be in pink and campaign against girlie things being in pink, how sad their pretty girls will not know about pink things and what a silly pointless campaign when babies die or are injured due to NHS negligence or cutbacks or when people can not get the care or medicine needed due to lack of funds...start campaigning about real things silly ladies as you never know when you may need them, don't waste your energy on pointless things like an innocent colour. If that is all you have to worry about then I wish my life were so worry free!

Anyway, this love of pink things has and is spreading around the house. I do have to say at this point though our new bathroom has hints of orange and no pink! The kitchen however is another matter altogether.

We have just had a new kitchen and I have kept the pretty pink things. My last kitchen was pink to the max, even pink tiles, although I have black ones this time. I once had a guy in to do the boiler check and I did have a low cut top on that day and was shocked yet secretly pleased when he said to me 'eh you are just like that Jordan bird ain't ya' but before I could take comfort in thinking he thought I looked like a glamour model he added 'yeah she likes all that pink stuff don't she and look at you everything is pink ain't it'....and Helen's ego plummets to the gutter once more!

I have added to the pink things and these are really pretty pink things :) I have discovered 'Pip Studio' I can't wait to move hopefully fairly soon as I aim to have lots of the wallpaper and bedding in the new house. I aim to add to my collection and would love the whole dining set and tea set but that will happen just slowly slowly as we have other things to spend our money on right now like our forthcoming honeymoon to Singapore!

I have these two storage jars, they look so pretty with little rose like handles on the top too. I also have these cups and saucers too and they are so very very pretty and so delicate. I would also love this sugar bowl and milk jug oh and the mugs too!





When you have children you really do need a good oilcloth tablecloth so you can easily wipe it down or it would forever be in the washing machine if you have messy children like ours! I tried very hard to find a perfect one. I had found some in a department store but it was a very wishy washy pink and I wanted something more vibrant. I liked the ideal of floral or roses but wanted a better base for all the flowery beautiful pip studio bits so opted for this tablecloth, it is a lovely bright pink without needing sunglasses. I felt the price was good and it looks so very pretty.



I have pink washing up bowl, drainer and bin but felt I wanted a pink bread bin, that was a little harder to find I have to say but eventually found one that is a lovely shade again and looks great in the kitchen.




I bought these all on amazon for the grand total of zero...how comes you ask? Well I am a savvy mum on a budget and signed up to topcashback and get vouchers (as you get a bit more when you chose amazon for payment). It is easy to use, just go through their homepage to do the search. I earnt nearly £400 in a year, it certainly helps for kids birthday pressies or just for pretty things like this!! You can join by following the link below.

Las Vegas, rest of the trip 2012!

Well this was my 7th time to wonderful Las Vegas and Roger's third. I think it will be the last for a while because the wonderful city of NYC is calling us (hopefully for christmas festivities) and what with our Singapore honeymoon in March and the urge to view more eastwards it may well be a while before we hit Vegas again.

Two days before we were due to go I had a car accident. My car is a write off...not a great hardship as we already had a new car on order which is due in January and I have since had a generous settlement from the other guys insurance company for it but it did leave some hassle about how to get to the airport so the day before found us sorting things with his insurance company and getting a hire car....also the pain was an issue but a trip to the doctors and some stronger painkillers helped a bit.

Hmm would the children be allowed into America?

We chose this time to fly direct with British Airways, normally the cost is not worth it and normally fly with American Airlines but gold card or not we decided to fly BA as the prices had dropped and we had a lot of miles to use so we traveled on reward travel (although of course you still have to pay hefty tax and fees etc). I have to say the 10 hour flight went quite quickly. I have previously done a 10 hour flight to San Francisco (that was business class this was economy) I was really worried especially being with the bouncy bouncy 2 yr old how it would be. I was rather worried how he would be although he has always traveled well before, this time he has developed sensory issues, all part and parcel of his cerebral palsy/brain injury (he suffered from a severe lack of oxygen at birth.)

It was our first time flying through T5, to be honest I was far from impressed. I have worked in T3 and T2 (RIP) and flown through T3, T4 and T1 in recent years, also Gatwick...I have to say this was my least favourite experience. It feels like (and looks like) a massive warehouse (landside). Airside feels cramped and crowded and does not flow. There were family security channels but they were full of non family flyers and we only ended there by chance not guidance. We had non family flyers behind us getting inpatient with us which gets stressful, there were 3 children, lots of hand baggage, a buggy, laptops and as Jules has baby food that to check as well, we were never going to be quick! It was hard finding milk for the baby as well. I had made a call and sent emails to BAA on their website about reserving items as it says you can but no one emailed back or called me back. I had to walk here and there between boots and the other boots branch and in the end paid inflated Pret prices for 3 cups of milk for his bottles as we were hoping he would sleep. (He did yayyy). When you get to the satellite terminals it is all glass, was very warm and bright sun magnified through the glass made for a very unpleasant wait at the gate and there was no announcement for people needing extra time to board, which we needed with a disabled child. When she was trying to take the buggy she said why didn't you board earlier (in the middle of the general rabble crowd) and I said well we did not hear an announcement she said well it was on the tv screen...err what tv screen, what about blind people who may need extra time? BIG fail on BA's behalf, but how amusing to see a massive Virgin Airline advert in the middle of a BA terminal. There was only one baby change room at each end of the terminal (landside), we waited for about 20 minutes and a cleaner came out, there had been no movement, I think she had been asleep. We had by then given in and changed him on his mat on the floor of the disabled toilet. I have to say though after working in T3 with very loud baggage belts, T5 was very quiet compared with with it.

Jules in the warehouse.

The big bird that got us there safely.

The crew were fantastic, very friendly and helpful. I chatted to the senior first officer a lovely guy called Julian Hall who was in the galley when I went up for a drink. I explained about our Julian who has cerebral palsy, hearing and sensory issues and he agreed that when we got to Las Vegas he could have a visit upstairs and have some pictures taken.

Jules pressing buttons and having fun up front.

I have been travelling all my life what with my father who worked for British Airways and with working for United Airlines myself, I have flown the world on many many airlines over the past 40 yrs. I have to say the food we had on both sectors of this flight was awful. It was even worse than Virgin and that is saying something. I am one of those strange people who adores airline food...ok I loved United's first class 5 course meals far more than economy ones but all the same I love it... I like a lot of food mind you but flying can be so boring and the food is a little excitement yes? I can see where BA are cost cutting to save money, very little drink service compared with American Airlines and coming back breakfast was a muffin with a lifesaver mint stuck to the packet, which for those who do not know what a lifesaver mint is well it is a polo mint american style. After a 9 hour flight, over night, most airlines offer an omelette or some kind of breakfast even if it is a croissant with ham and cheese, something warm would have been nice. In fact I feel the food would put me off flying with BA again especially as they are not cheaper for like for like flights...rather fly a cheaper american carrier that offers nicer food, full size cans of drink on a more frequent basis.....hey we did not have 7 bathroom trips with a 3 year old Jennifer to Chicago on United because they scrimped on a soft drink...and this was when they were subject to chapter 11 bankruptcy action.

One other thing I need to point out is that for whatever reason BA does not have cool air blowers in the ceiling so if you are hot, tough luck. I have had a few long haul flight on BA now and it is awful. I have read they put the temperature up to make everyone go to sleep on a night flight, they certainly made it hotter on this return one, in fact coming home I was so hot, I spent most of the flight sitting on the crew fold down seat by the back door where it was cooler.

Dadda and Jules

Jules checking out the safety card.

Jules was amazingly well behaved, slept and watched the ipad.

Customs at Las Vegas was usual american wait...not as bad as ORD not as good as MSP. Luggage was of course going round and round waiting for us, lucky for us we flew the flag and did not lose our bag! The new international airport is bland and boring, far rather enter Vegas via the internal terminal. Seemed to be a lot of walking both arriving and departing. Luckily our buggy had been stashed in first class for the flight so it was there to grab at the door. Previous flights on BA have seen it go to the luggage claim even though it was gate checked (not great with a tired 3 yr old) and AA the same thing happened (not great with a 6 mth old, car seat, bags and 3 boxes of special needs prescription baby formula that could not be put in the hold due to temperature).

Welcome to LV!

Had a very long wait for the transfer bus to the car rental facility but it was quick once there and we picked up our rather large...in fact very large GM Yukon.

Bored tired Jules waiting for car rental transfer.

Lovely large comfy car.

Arrival at the Elara (Hilton vacations) was far from smooth. A very stroppy girl on the front desk who refused to honour the free upgrade from a junior suite to a one bedroom suite we had purchased through hotels.com. Their (hotels.com) customer service was not good and an hour later a supervisor told us to pay for the upgrade and they would refund 20% of the booking to cover it...it did not cover it but hilton refunded some money too and hotels.com refunded some and gave us discount off our next booking too but after being awake for 24 hrs, having tired children and being in pain we just wanted to check in.

Our room was amazing. Spa bath, 8ft projector screen tv, 4 other tv's, full kitchen, dishwasher, washer/dryer, large bathroom and shower....fantastic. Maid service was hormonal to say the least bless her and after care from the hotel has been awful. My daughter sent a wedding card to us, it arrived on the 12th (according to tracking), we left on the 15th and asked and was told there was nothing for us and no message as to something at the front desk was left for us and on calling them when we got back they will only send it to us via fed express which from what I can see seems to be approx £80 to be sent back. I have asked them to please put it in the regular mail but they refuse.

To say we suffered jet lag is an understatement. Jules was ok, he has melatonin as he has issues with switching off and going to sleep due to his brain injury he suffered at birth but we were flat out for days it felt and I feel we did not do a lot for the first few days. I certainly felt out of it for days and very dizzy but then I suffer from Meniere's disease and often have problems like this, still suffering a few weeks on despite stronger tablets. We did various things, the most important being getting the wedding licence to enable us to legally get married in Las Vegas....we had people tell us our wedding in Las Vegas was not going to be legal...well it was always going to be because we did it the legal way and always planned to. The wait was not long at all. I had applied online so it was really quick, despite warnings of being busy due to the date of 12.12.12 coming up.

Roger has also been dreaming for two years of going back to the South Point for country fried steak so we did that for breakfast on the first day. They like the Orleans have a fantastic 24 hour cafe. Meals are cheap and fantastic value and very large and very tasty.

We also took the children to Skyzone which is fantastic, it is a place full of trampolines where they can just bounce and bounce from one to the other. My 10 yr old Jennifer and my 16 yr old Jordan both loved it. We also had Sunday brunch at the Cheesecake  Factory...again Roger had dreams of the Monte Christo for 2 yrs whilst I just dreamed about cheesecakes and chocolate milkshakes. The customer service there was fantastic, the food was delicious and in passing we mentioned we were about to get married and when he bought out my cheesecake he had decorated it.

Julian has sensory issues and we thought he would love the big fish tank in Caesars palace outside the CF, he was a bit unsure at first but eventually loved it and loved watching the fish...he even learnt a new word and said FISH! yayy go Jules!

We both love the shops at Caesars for people watching and just relaxing, plus this time I finally got to show Roger the curly wurly escalator. I got them to go and up and down till they realised I was taking the pee lol.

I love how you see some strange things in America, these perfumes were found in Walgreen's and amused us no end lol.

Roger felt like he should model this t shirt, not quite sure why? lol cheeky bugger that he is. I so wish I had tried this drink machine out, how many flavours? Why don't we have fun things like this over here?

We are not great gamblers, either volume or success....Roger seemed very happy and impressed with his mighty win though...only cost him $10 to get this!

We took a while to find the love sign in the Mirage, we were thinking of having some wedding photos taken there but did not get round to it but did find some funky things round by the entrance to the LOVE show.

On the Sunday evening Roger's parents arrived over ready for our wedding. Jennifer was really excited to see them and made them a lovely welcome sign....she also wanted a good excuse to use some funky marker pens she had purchased with her spending money, she is so her mummy's daughter. I always headed right for the stationary departments when we were on holiday in America as a kid, still look now, everything is so much more fun and funky.

We had a lovely breakfast at Oyster Bay in the Miracle Mile shops, very friendly service, unlike where we had dinner the next night across the way at Ocean One bar and grill...where pulled pork was a raw pork chop and the manager shrugged his shoulders. You can tell the difference in these places of an evening, Oyster Bay is full, Ocean Bar is empty! Awful place the Ocean Bar.

Roger took Gordon, Jackie, Jordan and Jennifer to Red Rock Canyon...I took the chance to go to Ross and do some shopping. This was the strip one down near Planet Hollywood...unfortunately the lift was broken to get from one floor to the other so my shopping was severely curtailed and they lost profits as there was no offer other than you can leave the stroller here and walk up, still no help when I explained he has cerebral palsy and can't walk and I can't carry him up stairs. We had a lovely stroll along the strip together. Jules loved watching everything and interacted with some of the daytrip sellers trying to sell trips. We also did some tacky shit shopping in the tacky shit shops along there. Everyone enjoyed RRC especially as they caught it at sunset, how perfect.

Apparently the kids ran off in the distance this is 18 x zoom!

My new mother in law, Jackie.

?? really ??

We wanted to take Gordon and Jackie to the Venetian to enjoy it and relax before we went there on our wedding day. Plus we wanted to confirm the table for the meal. We always have to have a gelato in St. Mark's square...it's the law.

We hit the hat shop.

Jennifer bought some eyeshadow....loved the way she matched it to her dress when we went out for dinner that night ;)

I have been to Vegas 6 times before but never been up the Eiffel Tower there (mainly because I have been up the real one I guess). I have to say though it was a lovely experience, wonderful views and a very knowledgeable lift attendant who gave us lots of facts and figures about various things and costs of hotels and casinos on the strip. The cakes after were a bonus of course! Before we went up the tower we went to the Sugar Factory. It was ok, nothing over the top special, food average....would not bother going again if we went back there though. Very nice restaurant to look at in a good location but I feel you pay for the location rather than the food.

  
Gordon and Jackie saw the Beatles tribute show in the miracle mile (Saxe theatre) and Jennie and I saw the Nathan Burton show...free ticket voucher for that but of course they had no free tickets for 2 weeks only the ones you have to pay for was it $10 or $12? anyway with box office fees and tax it jumped to nearly $40, interestingly when I went back later that evening for the show I heard the girl on the box office saying they did have free ones for later on in the week just not that day so who knows... Gordon and Jackie seemed to enjoy the Beatles show mainly and we enjoyed the magic show...bit cheesy but he made girls appear and vamoshhhhhh....Jennifer loved it but then she is 10 years old. It was not the worst hour I have spent but rather have seen Donny and Marie...again (but sadly out of town this trip).

...and then it was 12.12.12 our wedding day....We had a lovely day, Canaletto was fantastic, the minister was great and said some lovely words, I cried all the way through. Giving the date and the fact I am a Donny Osmond fan, we walked in to Twelfth of Never and Roger chose the Ramones, "Baby I Love You" to walk out to...it was perfect. We got married at La Bella in the Las Vegas Hotel. The flowers with the package were far nicer than I thought they would be, everyone was friendly. We had a bit of a wait and delay for the photos to come through to us...they said 1-2 days but it took 3-4 weeks and customer service lacked a bit. It was apparently due to technical difficulties. We are still waiting for the CD and DVD in the post but have at least seen the pictures and video online.

http://www.youtube.com/watch?v=GVYiKfoByag&feature=share&list=LLdY_lKdCpdVg3o3jgqXJHGA

This is our wedding video...I cried all through it.

I cried a lot more that evening when Roger show me a video he had made as a gift for me, this is it.

http://youtu.be/ZMNqRp8X-rI

Gordon and Jackie left us on the Thursday and that evening we headed to the speedway track for their 2 miles of lights around the track, it was pretty good and the kids loved it, well Jules fell asleep he was that impressed lol.

For our last night we escaped and left Jordan in charge when the other two went to sleep and slipped down into the miracle mile shops to enjoy a meal on our own (kids had already eaten we did not starve them honest). We did first walk over to the wicked spoon buffet in the cosmopolitan. We went to try that and also to have a look and see what it was all about being new and opening since our last visit. I have to say I was not overly impressed and neither was Roger. It seemed to be very empty, it did not feel like it had a heart or soul. Seems you can put all the money you want into a project, it does not mean it will work. We got to the buffet at about 20.30 and they were not accepting anyone else in...it was closing and they were cashing up the till. This just about finished off our opinion of the cosmo...we then left and saw bubba gumps back above the miracle mile but apparently it was not opening until the next night...shame because we had enjoyed our meal at the one in times sq nyc...so in the end Roger joked about the sports bar in the miracle mile so he could ogle the cheerleader waitresses, so at which point I gave up said yes and we sat there. I people watched everyone walking past and he watched the sport over my head and the legs of the cheerleaders and he enjoyed good large beers. What a good wifey I am eh! We had a starter of dough balls with garlic but I really think it should have been called garlic with dough balls...check out the picture below...vampires certainly did not get us that night!

It was with a heavy heart that we packed to leave....had to purchase another suitcase (what is new there?). Another mess up with Hilton, clearly says we only had an internet charge on our bill yet we were charged all those room upgrades (we thought they had finally sorted it for us) but alas this was apparently another issue due to an upgrade to a new computer system...we had a problem with the maid bursting into our room needing to use our room phone to log she had cleaned it (not to mention her leaving wet towels all over the kitchen floor one day too).

Suitcase full of goodies for Taylor.

We went to Silverton to see the mermaid 'show'. Jules loved seeing the fish and played through the glass with the mermaid but it was hardly a 'show' it was a woman in a fin waving at people.

We had a lovely meal at TGI Friday's for old times sake at the Orleans and headed sadly to the airport :(

Got to the airport with plenty of time to spare so spent some time spending the remainder of our dollars and feeding the children in case they didn't like the plane food (which they didn't). Again a friendly crew, we were first to board and we were asked did we win a million and Roger replied no but I won a wife, we got married...an hour or so into the flight we were presented with a full size bottle of champagne which was lovely. Jules was a good boy and slept well, other kids were no problem and I managed to watch a few films and catch a few Zzzzz's.

This is made of of butterflies and looked amazing.

Very very long walks everywhere in the terminal.

Our plane to take us home.

Safely back at LHR.

The full wedding post is also on this page, please see the list of posts to the left hand side.