Monday, December 12, 2011

12.12.2011

Stella turned 23 months old yesterday, still so so young and very much still my baby girl.

After nearly three weeks in intensive care and a few on the ward Miss Stella is coming home today.

It’s a big day. She will be brought home by ambulance as she is so fragile.

We now have different equipment. I thought before was hard but now it’s a whole new ball game.

We have a suction machine, air mattress and oxygen.

Stella doesn’t swallow at all anymore and needs oxygen at a low rate full time now. She is also floppy, even more so then before.

They have changed her drug cocktail around now so the ones I use to be able to do with my eyes closed have all been changed.

The last three weeks have been so up and down. It’s been a frightfully scary time where I honestly thought we may lose our Star. I cannot explain the raw emotion you feel. The tears, sobbing and the heartache, it’s awful, and its real and it doesn’t go away.

Saturday last week we were told to say goodbye. The team in ICU meant it, and I thought this was it. I have never doubted Stella before and have always remained positive but I really thought she wouldn’t be okay. They said her body went into shut down after a collapsed lung. Oh my, it was awful.

She did however get through the afternoon that they expected her not too, and became stable. What an amazing girl, to go through so much and still be here, wanting to be here.

Without going into too much detail she is now being looked after by palliative care, I’m sure you all know what that means. To me it means she’ll be comfy, not in pain and smothered with lots and lots of love each and every second of every day.


Christmas is around the corner, and I just want her here for it. I want to be holding her in my arms.
My princess, who I know so many do love, is taking us all on a ride, her ride, and she is now the one calling all the shots.





77 comments:

  1. Awww Chels... U stella jett n scott as well as ur family remain in my thoughts n prayers daily.... So much positive energy; love and prayers are being sent your way xoxo

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  2. Burst into tears reading this, I can't imagine how you feel. Stella is such a brave little girl. Wishing you all the love and healing in the world xo

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  3. Big hugs honey. Roll on Christmas and lots more cuddles and kisses with your precious and brave baby girl.

    Sending lots of love and strength to you all oxoxo

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  4. Love, thoughts and prayers coming to you and your precious poppet Chels. I wish I could do more for you all, give Stella another gentle kiss on the forehead from me.

    xx

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  5. Chels, you are such a wonderful mum to your precious little star. Sending you and your family as much support as I can muster. Maxi xxx

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  6. Reading this tears streamimg down my face i cant imagine!! but Chelsea you are one remarkable young woman staying so strong for Stella and all the rest of your family. My prayers, thoughts and love is with you all and hope you have the most memorable xmas you can,

    Lots of Love from Tracey,Craig,Taylar,kieran&Emily xoxo

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  7. Such a strong, brave and beautiful star. Much love to all of you.

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  8. Sending lots of love and prayers to Stella and your family xx

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  9. Thinking of you all through this tough time. Hang in there Stella!
    Sending you lots of love and prayers xxx

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  10. Oh Stella....you've been such a trouper. Lets hope your home coming is comfortable and a comfort for your family. Thinking of you, brave girl.

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  11. From my family to yours, as much, love, courage and strength as we can send to you all, but especially Stella.

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  12. Much love and prayers to your family Chels and your beautiful girl xxx

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  13. Thinking of you, Chels. You are all in my prayers. Love TT and Leo xx

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  14. Gorgeous Stella, you are so strong!Love to you all Chels ♥

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  15. Just read this beautiful post & am devastated. What a brave, gorgeous girl. I also have a Stella but cannot imagine what you are gong through. Sending love & hope for a Christmas miracle.

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  16. Thinking of your all and sending love and prayers. xxx

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  17. Wendy from VegieSmugglers (on FB) posted a link to this and i have just broken down. I cannot imagine how heartbreaking this has been for you and your family. My sone is 3 1/2 and i dread the thought of anything ever happening to risk me losing him. I hope Stella makes it to Christmas for you and continues to be as happy as possible. My thoughts are with you and i will be sharing your blog in the hope that it helps raise awareness. Wishing you all the best for the Christmas Season and the future. ♥ Tara S

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  18. I'm thinking of all and sending you love and peace for Christmas.

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  19. Love, prayers and stength to you, your family and your beautiful Star Stella. xxx

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  20. Hi. wow...i just read the whole lot - i cant stop crying. As a mum myself, I don't know how you're doing it!
    My thoughts and prayers are with you on what must be the hardest thing to go through.

    I wish there was something i could do to help. i am stuggling financially, but if there is anything else i could do, just say the words. I wish you strength, peace and all my hope and love for her. All the very best to you

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  21. we love you beautiful stella. we are so proud of you and sending you strength and love from kristy and richard

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  22. I cant imagine how much strength you must have to have written this post let alone the strength you have had in the last year or so. You're an amazing mother and an inspiration. Stella is lucky to have you with her, holding her hand. Sending enormous amounts of love and prayers from WA, Lana xx

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  23. Wishing your family an amazing Christmas.

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  24. I cannot even imagine a greater pain Chels. She is such a brave beautiful angel. You are in my thoughts. HayleyNZ

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  25. Sending my love and healing thoughts your special little girls' way!
    <3

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  26. I am so sorry that this is yours and your gorgeous girls journey, but she really does sound like she was appropriately named and is a star. I hope with all my heart she is able to continue this journey and be here for Christmas xx

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  27. You are an amazing Mother, wife and woman. I will keep you, your husband and son, and your precious daughter in my thoughts over the coming weeks. I pray for peace for Stella. What a brave and beautiful little girl.

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  28. Wow...I have just read your blog after my sister spoke about it today, I'm so, so sorry what you are all going thru, you are a remarkable woman as is your partner and extended family and Stella you are a gorgeous little girl...I have shed tears (many tears) while reading your blog and looking at your photos...I don't know you or Stella but please know I am sending my love and all my strength your way, you are in my thoughts and my prayers xo

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  29. I can't even begin to imagine the world you are living in right now. The strength you show just in writing the message above shows what an amazing mother little Stella has. I wish you ever ounce of peace and happiness over the next few months and that your christmas wishes come true. xxxxx

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  30. I've cried and cried for you all... I don't know you, but have said goodbye to a little angel as well. She will be with you for every beat of your heart forever. Sending lots of love to you and your family.

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  31. Our love and support to you all. My little girl will get extra cuddles today as I think of yours xx

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  32. Sending you all the love, thoughts and prayers in this world Chelsea & your amazing little family xxoxo Kara

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  33. Stay strong your mge is spreading. Stella is being thought off. Lots of love and prayers

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  34. What a strong and beautiful Mum you are to a special little girl. Thank you for sharing with us all. Hugs and love to you, families are eternal and you little star will be waiting with arms outstretched for you one day. ENjoy the special together time you have.

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  35. I have just finished reading all of your blogs and i am in tears. You are an amazing mother and your family is so supportive. I hope and pray that a cure can be found. Stella is a strong little girl. Enjoy all of your cuddles

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  36. I have no words as I know that nothing I say can change anything or bring comfort, but I wanted to say thank you for sharing Stella's story. She is such beautiful girl and has obviously touched so many hearts. I'll be keeping her and your family in my thoughts.

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  37. Her life has touched so many... she is in my thoughts, prayers and heart today. What a beautiful little fighter, and what a very very brave and wonderful mum! You are lucky to have her and she is lucky to have you as a mum.

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  38. My little boy is one day younger than Stella, and when I read your posts he got lots of cuddles from me (and his father who also read them). We are praying for her to be here for and to know she is here for Christmas, and that you get to make the most of every second with her.

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  39. You have a tremendous sense of strength, courage and character. Your little girl is truly blessed having a mum such as you. I wish only peace for you all and that with time the shock of what has overcome you may pass. You are in my thoughts.

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  40. You will be in my prayers and thoughts! I too wish I could say something profound to alieviate your hardships ... love from afar. Your darling is beautiful xx

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  41. I have no words that can come close to easing your pain, I read this and burst into tears, I also have a daughter who is 23 months and I cannot even imagine what you must be going through. Your baby girl is so loved and so lucky to have you as her mumma. I am sending you all the love and strength in the world and pray that you get your wish of having Stella with you this Christmas.You are in my thoughts.

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  42. She is beautiful. So beautiful.

    Jane
    xoxo

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  43. I was sent here from sweet creations and I have read each post and I have just read this post to my husband, having to stop many times to literally sob. Your little girl is the same age as my boy...and Im just utterly heartbroken for you. You are the best mother to your little girl. I will pray your little girl is snuggled in your arms on christmas day.xx

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  44. I pray that you are blessed with your angel at Christmas. She is very beautiful and is clearly touching hundreds and hundreds of people. Thank you for the courage to share your story. I feel that she is bestowing blessings upon us. Thank you for introducing Stella to us xoxo

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  45. Oh my goodness......I have just read all your entries.....oh my goodness.
    About six weeks ago my son got an infection in his lung (he was 13mth) and was running a temp over 40 he had no sings of. Cold so I had know idea what it was. When I took him up to the hospital we were taken right in and as we were he started fitting (just from his temp) but I had never seen anything.Ike thT before and having him taken off me and drs fussing over hi oh my gosh I had never been o scared in my life. To see my baby boy with wires ect on him. Now all I can do is sit here and think how nothing that all was. I got cranky at my kids this eve cause they wouldn't sit at the table and eat there dinner. Thank you for sharing your story and reminding me what is really important. I hope you all have a peaceful loving christmas. (I wish I could just reach across and take some of the pain and heartache from your heart and give you a break)

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  46. I never comment on blogs but i just read your whole story and i cant stop crying. I have a baby girl who is turning 1 next week and can't imagine what you are going through. You sound so strong and calm, i just don't know how you do it. You have reminded me what is important and am about to go in and see my sleeping daughter. You are so incredibly strong and a true inspiration. Thank you for sharing your story.

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  47. My heart is aching after reading your story. Your beautiful little girl. I just don't know what to say except that I think you are an amazing woman, mother and wife and thank you for sharing you incredibly emotional story. I can't stop crying at the moment. Stella will be in my prayers always x

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  48. You have an amazing little girl....

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  49. Hi Chels, I have been so humbled by your story and all you have been through. I have a daughter who is a twin and is almost 4 in January - she drives me mad, pushes the boundaries and is really hard work and high maintenance. However having read your story and seen what you have been through I am going to go and give her a big hug and be grateful for the little feisty girls she is, be grateful for the "adventures" she brings to our family and be thankful for her health. Your story has made me think twice and appreciate just what I have and for that I am truly appreciative. I will pray for you, your daughter and your family and know that Stella is in God's hands and always will be. Wishing you a happy and health Christmas time with your family.

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  50. Hugs and love to you and your family. Your little star is absolutely precious. I hope and pray with all my heart that you get a christmas filled with cuddles and love xx

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  51. At such a busy time of year, your story has made me stop in my tracks and realise what is important in life. I have a little boy roughly the same age as Stella, and like any mother who has a sick child my heart goes out to you. Sending my thoughts and prayers to your precious little star, and hoping your Christmas wish comes true. Dawn xxx

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  52. Just wanted to let you know that I'm reading and I'm thinking of you all. Stella is a gorgeous girl. She is touching so many with her story and I will keep you in my thoughts over Christmas. I wish there was some way to make her all better. xo

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  53. A friend of mine wrote this song for me a few years ago. The song was written by Ehren Roebuck and has beautiful music with it. The song is called 'A Stellar Experience'. Since reading your post and shedding many tears I have not stopped thinking of you and your family. I dug this song out, as music always helps me. My name is Estelle, which means star as well:

    "Lush green fields under clear blue skies,
    The sun's glowin' red like the Devil's eys,
    There's no time left to wonder why,
    A room full of mirrors hidden in your eyes.

    Stellar Experience (*4)

    Capricorn and Gemini
    A shooting star in the southern sky,
    Points of light, helping lead our way,
    The night draws nearer to the dawnin' day.

    Stellar Experience (*4)

    A lonely zephyr licks the desert dunes,
    Guided by the light of the moon,
    The ships of the desert will awaken soon,
    While the sidewinder makes way across the dunes.

    Guided by the light (*4)

    If you would like a copy of the song, I can get it to Rebecca K, as she is a friend of mine.

    My heart goes out to you and Stella and know that you are not alone in this journey. Stay in the light.

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  54. May God give you all the strength. You will be in my prayers. I can't imagine what you are going through- stay strong.
    From
    a mother

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  55. To dearest Chels, Scott Jett and beautiful little Stella. With my whole heart and Soul I will pray for you all that a Christmas angel grants you your wish. Your are a amazing mother. You have all been so much in a short amount of time and my wish for you is to have many more days with your beautiful girl. My heart aches for you. My little shyla is Stellas age. Ohh I just can't imagine. Your blogs have opened my eyes just a little more to relise how lucky we are and how grateful we should be. Stay strong. Thoughts and prayers are with you all

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  56. Hi Chels, a friend came accross your blog and told me about it. I met and became friends with this person as she was my daughter's nurse. I read your blog and it all sounds so familiar and real. My daughter Elisabeth Grace had a rare form of Mito disorder. The last photo that you put up of Stella asleep, looks so similar to our Elisabeth, I have a photo exactly like this, with her ng tube, chubby cheeks and porcelin skin. If you would ever like to contact me....I am on facebook - Louise Blair, I live in NQ Australia. Like one of your last blogs you made comment who cares about the housework you are just going to focus on cuddles. I totally agree! That's all I did was sit and cuddle all day, every day....enjoy your time. xo

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  57. I hope that you are holding Stella on Christmas morning. Reading your blog has put me in tears and I wish there was something I could do to help you. Thank you for sharing Stella's story SO FAR, I am sure she is still very strong. She has astounded doctors since the first fit she had and you were told to say goodbye. What a miracle each day has been. You are a true inspiration Chels, my love goes to you, Scott and Jett. x

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  58. Chels, I was so touched to read your story as sadly I can relate to it all too well. My little Jack was diagnosed with Alpers earlier this year and lost his battle at the end of March just 4.5 weeks after getting ill. Enjoy your cuddles and you will keep finding the strength you need, I don't know how but you will.
    I live in the UK and you can see Jack's story on The Lily Foundation website. If you would like to be in contact then just email the charity and ask them for the details of Jack Bennett's Mummy
    http://www.thelilyfoundation.org.uk/our-inspirations/jack-george-bennett/

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  59. My heart goes out to you........

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  60. Thank you so much for sharing Stella's story with us. I pray that on Christmas Morning you hold your beautiful daughter in your arms and hold her tight. Your baby is a miracle and defeated all odds, what a strong little girl Stella is. You have gained strength to keep from each day and i am sure Stella can feel that. Close your eyes to housework and just let your heart concentrate on your precious Stella. I will be thinking of you on 25/12/2011. Lots of prayers, love and strength i send to you my precious angel.Gloria

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  61. Peace and love to you, baby Stella. Watch over your beautiful mummy, daddy and baby brother. Forever a little Princess, xxxxx

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  62. I'm so terribly sorry about your loss, your darling angel girl put up such a brave fight and she won't ever be forgotten even by those that never had the fortune to meet her. My heart goes out to you and your family. My deepest sympathy xoxoxo

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  63. From your arms to God's...sending all my love, strength and prayers for your family at this time.

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  64. May all the other angels hold your hands as you spread your wings in the playground of heaven this Christmas. No longer here to hold but forever in the hearts of everyone you have touched. Chelsea and family our thoughts are with you at this time of loss. Ind peace in knowing that she will forever be waiting for you in heaven to play with you again. Thank you for sharing your journey and raising awareness of Stella's condition. God will be keeping her safe and she will be watching over you.

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  65. What an amazing little girl. May her strength and willingness to fight for every second give you the strength you need to move forward.

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  66. An amazing little girl, you can see in her eyes that she knows how much she is loved but I only wish that she could have known how much impact she has had on so many lives in such a short time.

    Chelsea, thankyou so much for sharing Stella with us. I have a 23 month old daughter and you have ensured that I will not get caught up in life and let the important everyday moments pass us by. For me this is Stella's legacy - to make the most of every moment in life, to make us adults realise that we should take nothing for granted. Your little princess made her mark on this world, and it's a mighty message that she left for us.

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  67. I could not have said it better than the previous comment regarding Stella's legacy.

    My heart is breaking for you, Chelsea. I wish that things could be different. I'm angry for you too. Why did this have to happen? It's not fair.

    A candle has been lit in honour of your amazing, beautiful strong little star. God speed, Stella Grace.

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  68. RIP Stella, I'am beyond words for your loss your daughter will always be apart of you I've read your story and it has stuck with me all afternoon including the tears I can;t imagine your pain now. Thank you for making people aware of this disease your daughter is absolutely beautiful. May you find some peace in the memories you keep for your daughter xoxo

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  69. Rest in peace beautiful Stella ♥♥♥

    I wish you much strength and love Chels, Scott and Jett through this tough time. Stella really has made a difference to so many lives, even those of strangers. Be proud of your darling girl, not only was she strong in life but she lives on in your blog and so many people around the world now know her story and will think of her. Her life is a celebration and helps us to remember the important things in life. Never forgotten, forever living in our hearts.

    Sam xx

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  70. What a brave, loving, heroic family. May you find peace after such heartache. Dear, sweet Stella, may you sleep peacefully now. The world was so blessed to have you here even if just for a moment but there is no doubt you will live on forever in many hearts. Thank you for sharing we with us Chels you are such a phenomenal woman if you were ever to wonder what your amazing little girl would have been like you need when she became a woman you need not look very far but in your own reflection. She will be with you forever. Just remember that, she is ALWAYS going to be with you xxooxxoo

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  71. I am so very sorry for your loss Chels. Stella you are a beautiful little girl and never ever forgotten. xxxx
    too sad.

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  72. I am very sorry for your loss. I wish you much strength through this tough time. She will live on forever through her story, and won't ever be forgotten. Much love xx

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  73. I dont know your family but have read your story, Im very very sad and my heart aches for you x

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  74. Sitting here reading your blog and I am in tears and they can't stop. I have children 2 littlies and can ot even imagine what it would be like to lose a child. I speak for my whole family that our thoughts are with you and your family at this very sad time, her memories will live on and on forever with everyone xxoo

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  75. Rest peacefully beautiful angel, guide Mummy & Daddy & hold tight little brother. My hearts breaks for you x

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  76. I'm sorry Chels, I only just caught up with Stella and your story.
    You've created such a wonderful testament to her life here. Your words & images will continue to inspire and awe for all time.
    Stella has always, will always, be a star.
    I bet she's so very proud of you and of being yours.
    I wish you all much love. Kitty

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