Samuel Louis Graeme Jones

Xx Thank you to every one who sent tributes, gifts and lit candles for Samuels anniversary sending all your angels lots of love and to you to love Linda xX

XxThank you to every one that lit candles sent pictures gifts and for the kind tributes sent to Samuel for his 2nd birthday. Also to everyone that have been lighting candles sending tributes for your kind words of comfort since Samuel's sight was set up. I haven't been able to come on here for a while as i sometimes find it to painful so I'm so grateful to the people who regularly light my sweet angels candles. Thank you so very very much love to you all and to your sweet angels Linda Samuel's mummy xX


Xx Hi may i say a very big thank you to everyone who has lit candles for my sweet angel and for all the lovely tributes left for us it means so much to me love to all your angels Linda Samuel's mummy xxxxxx


Xx To my beautiful little angel Samuel i can't believe its been a year since you went to play with the angels.
When you left a big part of me went with you and i will never be the same person that i was before i had you ever again.
I love you so much and miss you with all of my being i feel so privileged that you chose me to be your mummy and that you came into my life,for the time we were able to spend with you for the love you gave back to me.
One day my angel we will be back together when my time comes until that day please know that i will continue to love you deeply and all of my lovely memorise of you are locked deep within my heart my sweet baby boy xX
LOVE YOU ALWAYS MY LITTLE SWEET PEA YOUR LOVING MUMMY XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX


Hi my sweet baby was born with a chromosome defect called Edwards Syndrome T18.
I found out from a nuchal scan that Samuel had some kind of problem as his nuchal was raised to high. I went for an amino and nervously waited for the results.
I was visited by a lovely lady from the hospital who gave me the results. She told me my baby was a little boy but he had edwards syndrome and that babies with that syndrome often died in utero or shortly before or after birth. She gave me the option of having a termination and left me to think about it.
My immediate thoughts were to give my son the choice of how long he wanted to stay with me also if he wanted to be born and how long he wanted to be with us if he was.
My pregnancy was very hard every day i hoped samuel would hold on. Every time i went to the midwife i couldn't wait to hear his heart beat wondering if i would hear it she always found it and i would feel so happy knowing he had chosen to stay with me i willed him to stay strong.
I ended up with sugar problems but as it was nearer to the end of my pregnancy they didn't do anything apart from tell me to watch me diet. It was christmas and all the goodies i couldn't have but i did have a little now and again. I had some sticks to check my levels of sugar in my urine but had to push for that my doctors subscribed them for me after i told them how worried i was i had more support from my doctors and midwife at my surgery than i did from my consultant at the hospital.
I also carried a lot more water than normal and was in constant pain with my ribs i was house bound in the end for fear of my waters breaking as it would have been dangerous for samuel if that happened. I was so big that walking up the stairs was an effort but as long as my baby was ok it didn't matter.
I had done a lot of research about the condition on the net so had a knowledge about it as my consultant didn't say much to me when i saw him. i asked for an elected Cesarean but was told it came with to many risks and that as my baby was certain not to survive he didn't think it necessary.
I wanted to give my son every chance and was willing to do anything i could to give him that if only he was born and i just had the chance to tell him i loved and wanted him so much before he left me it would be worth any risks to me.
I had brought a doppler so i could listen and record Sam's heart beat and keep a close eye on him myself and it was over the weekend when i was 38 weeks that i noticed his heart rate was erratic i was warned that a lot of edward babies pass at this stage if they managed to get that far.
I phone the nice lady that had given me the results as she kept in close contact with me she made an appointment at the fetal health. On monday afternoon i went to be monitored samuel didn't move a lot and there was an occasion that his heart dipped i was told to come back Tuesday morning to be monitored again i did and it was clear there were problems arising. I was given the choice to be induced which i agreed to in the labour room i had a gel and started to have minor contractions i told the midwife that i wanted samuel to be given every chance of survival even if it meant a c-section.
Every contraction his heart dipped i knew if he wasn't coping with minor contractions he wouldn't cope when it came to major ones. This went on for some time and the midwives changed shifts i made it clear to every one of them that i wanted sam to be given the chance his heart dipped more and i became very worried for him she called in the doctor who said they wouldn't give me anything else that evening and would get me going the next morning. I wasn't at all happy with that and told them so later on she fetched in another midwife and they looked at sams tracing of his heart she then called another doctor who told me that i could be monitored for another 40 mins or i could have a c-section. I told him i wanted him out he was to be given every chance of life and to be treated just like any other baby who had problems was. He agreed and every thing then went so fast with people come in and out i was taken to theater and samuel was born.
I heard a very faint cry like a kittens cry and he was here he was wrapped in a towel i kissed him and he was taken to special care.
I was taken in to see him my family came to see him in case he decided he wanted to leave us. I was so proud of him but also so afraid he was so small he weighed 5lbs 8 & a half ounces.
The next morning i asked for the chaplain to come and christen him it was arranged for wednesday all my family were there it was lovely but a very tearful time to.
As time went on sam had a few set backs but always came through i had to over come my fears of him and start to hold and feed him he was fed through a nasal gastric tube as he was to weak to suck from a bottle he had a hole in his heart and his sugar levels were difficult to get right because the diabetic doctors decided not to give me anything but above all of that samuel came through he was such a brave little baby and a fighter. He wanted to be here and as long as my son fought for his life i to fought for him as i had to fight for everything from his heart seeing a specialist for that and for his hernia.
He was doing really well i expressed my breast milk for him as it was the best milk for him and we got him home when sam was about 4 mths old he ended up with a chest infection which turned to phenomia he was treated just as any other baby was he spent a month in hospital and seemed to be picking up although he was on oxygen then they insisted that sam had his first inoculations i made it clear that i wasn't happy about it as he still wasn't well enough but they did it anyway.
It sent him crashing back down to square one his need of oxygen went up to 12 litres they then
called in a doctor from leicester hospital he looked at sams chest x rays and told me that sam was coming to the end of his natural life.
I was numb with shock how could this be it was so hard and so unfair i was offered the choice to take him to rainbows hospice for end of life care.
I looked at the pictures on the net and told a lot about the place i decide to go as it was more homely and not at all like a hospital.
It was samuels savour they were fantastic and we were made so welcome we had a flat to stay in and my daughter who was my anti natal partner through out all of this and was with me every step of the way from antenatal appointments to being at sams birth who i love and trusted so much she was the first one to do every thing for sam and i knew if she could do it then i could to.
He had two mummy's me and vanessa was also given a flat with her husband and my three beautiful grandchildren.
My family were able to visit and stayed over when at one time we thought as did the doctors that samuel was going to let go of his life.
He surprised us all by over coming and fighting of a chest infection on his own with a lot of physiotherapy from me and vanessa.
It took some time but slowly samuel fought back and was eventually well enough to come home on 4 liters of oxygen we went back for some respite a couple of times but as time went on samuel started to become poorly he was on constant oxygen and his levels of need went up and down he was in and out of hospital but still he fought to stay with me. I was totally exhausted but i wouldn't give up on my son and stayed strong for him i loved him so very very much.
In the october sams condition worsened and we went back to the hospital he had a couple of very scary moments when we thought he was going to let go of life but he stayed with us we had christmas early as i knew it was only a matter of time that my little sweet pea was going to stay with me he was getting tired of fighting and his oxygen levels went up to maximum 15litres.
We stayed there for some time and then decided to go back to the hospice so we could all be with him and be more comfortable by this time my daughter was heavily pregnant with her own baby.
Her husband and children came along with us and stayed for a while but then the children had to go back to school as they had lost a week so ben took them home but vanessa stayed we knew samuels fight was coming to an end.
My beautiful little boy was going to leave us he then caught the flu a bug which was going round the hospice and became very weak he was already weakened from a diarrhea bug that he caught at the hospital he lost so much weight it was horrible to see him like it.
I couldn't bear it and asked the staff to tend to his needs as i couldn't anymore.
He had a particularly bad night and i spent most of it nursing him by the morning the doctor came in early and said he thought samuel was turning the corner again and on the mend so i was ordered 4 hours sleep so i could spend that night nursing him again. I was so exhausted i had no choice but to go to bed as i couldn't keep my eyes open and i felt poorly in myself through sleep deprivation caused when we were at the hospital. I fell into bed but something told me to go back down but i didn't have the strength to get up and fell asleep.
I was awoke by a nurse knocking my door and telling me to come quick my worst nightmare was unfolding at my feet.
As i entered sams room my daughter was crying she held sam out to me he had slipped away without anyone noticing. It was the worst moment of my life my beautiful little boy was gone and i didn't get to say goodbye it broke my heart.
My daughter was in pieces along with myself but i was so glad that samuel decided to let go of his life being nursed by his big sister his second mummy.
My daughter though she was heart broken was brave enough to contact all of our family to come to say there fare wells to samuel.
I bathed him and talked softly to him and we put some lovely baby powder on him. It was soon time to take samuel to the quiet room were he was to rest until we had arranged his funeral. we were aloud to sit and visit him any time we wanted.
We went shopping and brought a beautiful christening outfit for him and a lovely new shawl we dressed him and then let him rest.
There were lots of pictures took and i was able to arrange samuels funeral just as i had wanted it we had him home the night before his funeral in his casket which i had sprayed baby blue and had doves and sweet peas hand painted on by a member of rainbows we enclosed lots of toys, letters, pictures and things that the family wanted to put in for sam to take with him.
We had his service at Saint Marys church in Rushden by the chaplain who had christened him she came and blessed him after he had passed as well the interment was at Kettering crematorium and was packed by a lot of staff from the hospital also some members of rainbows we all wore big snow flakes that we had made at rainbows as on the night samuel came to me it snowed he truly is an angel and i am so very proud to be his mummy. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

WE ARE ONLY A BREATH AWAY MY ANGEL UNTIL WE ARE REUNITED HAVE LOTS AND LOTS OF FUN UP IN HEAVENS CASTLE LOTS AND LOTS OF LOVE KISSES AND CUDDLES
MUMMY XXXXXXXXXXxxxx