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Update - off to GOSH

Charlie has been diagnosed with a condition called hyperinsulinism and has been in the Special Care unit at Wexham Park since Monday afternoon. The cause and prognosis are unknown but he will be transferred to Great Ormond St on Monday. I am going with him and am so upset about leaving my OH and Abby. :cry: He will be on the metabolic disorder ward "Rainforest".
This weekend is my special weekend with abby. I'm still quite sore but I'm sure I can manage to take her out to do some fun things. She has been my joy and my rock this week. The other mums in SCBU keep saying that it must be hard having a toddler as well but she provides me with a distraction and a reminder of my beautiful family. I know I always moan about how lively and hard work she is but she has been so good this week. She runs around the corridors of the hosiptal with daddy whilst I am with Charlie and then sits with me readin a book when I express and Daddy is with Charlie. She will then sit with us for 15 minutes whilst we talk to the doctors. She has been amazing! :\)

I am so upset about the split in my family. My local hospital is 5mins away and I can spilt my time quite well (I discharged myself on Wed) but GOSH is much harder to access. I am going to go days wihtout seeing Abby and my OH and may not be able to come home for weeks. I know this is going to sound awful but I don't want to go. I want to be at home with my daughter and husband. I want to slepp in my bed and wake up with 2 wonderful people to cuddle.

H xx


  • Ach Helen - of course this isn't what you want. I think it sounds perfectly normal and not at all awful for you to want to be around your two biggest sources of support. However, mums have to do what mums have to do - even when it's shit - and so you will. I really hope your OH & Abbie can come visit you and Charlie. I won't say it'll all be fine because it's a totally traumatic separation you will be experiencing, and on top of the worry and anxiety associated with Charlie & his condition. Draw on that inner strength we all see do clearly in you to get settled in at GOSH & I'm sure there will be plenty of tears but you're there, doing the best possible for your family. Abby and her dad will cope admirably & do their bit too, to hold the family strong & together, even if you can't all always be together. Keep the spirits & energy high as you can, my love. We're all here for you xxxxxx
  • Oh dear hun,
    not at all what anyone least of all you wanted to hear image I REALLY hope that Charlie is okay and fighting on strong just like his mummy image

    It doesnt sound awful that you don't want to be moved to a hospital miles away from home and the love and support you have from your OH and Daughter that sounds perfectly normal! Yeah it's hard having a toddler but only because your one person and two people need you desparately and you need them and you have to share yourself out! Abby will sense that you need her in her own way and thats probly why she is being so good for you and shes hyper like all biddies are =D

    GOSH is an amazing hospital but also somewhere no-one wants to end up cos it means your baby is ill but hun at least he is in the best hands there and although you will be in a strange place alone with Charlie in an unfamiliar and not a very comfy bed at least you know your being an amazing mummy and that your son is getting the best treatment possible! One day you will look back at this hard time and it will all have been worth it! It's heartbreaking that you have to leave Abby and your OH i really think that in these circumstances there should be allowances made and a place for the family to stay too!

    All i can say is that you are an amazingly strong lady and a fabulous ,mummy image Hopefully on the ward when your settled you will be able to socialise with other mums and babies and make some friends who know what your going thorugh a lot more than we ever could and can offer you some support not the same as your family but at least something and the doctors and nurses are so specialist there too and im sure they will help support you! We are always here for you too all thinking of you, your OH, Abby and baby Charlie at an incredibly difficult time! I hope that you get an explanation and prognosis sharpish once you get there and hopefully your stay wont be too long.....

    I think its great your going to have a weekend with Abby i think you need it as much as Abby does something to think of when your with charlie and you can look forward to days out like that with charlie when he's better image

    Will watch out for your updates as and when you can hun and as Lizzie says your inner strength will get you through your a mummy and were made of tough stuff image

    Will have you in my thoughts and prayers every day hun and Abby n Charlie too

    Much love to you and all the family.....

    Eve, Sam, Ella, Ruby & Bump
  • What a stressful time for you and your family. It's great that they've worked out what it is now so they can begin to address it properly. Really sounds like Charlie's getting great care and now in the best place possible.

    Can't imagine how difficult it must be for you being seperated from Abby and your hubby. I'm sure you will cope as well as you can though in the circumstances. I would feel exactly the same about not wanting to go and it doesn't sound awful at all. Totally natural. As Lizzie said they are your two greatest sources of support and love so it's natural that you want to be with them.

    My thoughts are with and you and Charlie. I hope that your family are able to be together again as soon as possible. Love and Hugs xx
  • Our love and thoughts are with you H. I think the others have said the rest far more eloquently than I can at the moment.
    Thinking of you all. Hope you had a lovely weekend with Abby.
  • Cannot imagine what you are going through hon, sending you bit hugs, keep us posted on how he goes on xx
  • Just want you to know that you are often in my thoughts at the moment, was really hoping you were going to be able to report Charlie was coming home rather than what is happening : (

    You must feel so torn, and totally natural to want to be at home with your two rocks.

    I hope the move to GOSH goes okay tomorrow and that can get further forward with the casue and prognosis really soon.

    And well done Abby for being such a well behaved girl xxx
  • I think everyone has said it all...
    I hope you had a nice weekend with abby and its not too long before youre back home all together as a family.
    Will be thinking of you, oh, abby and charlie.
  • thinking of you today (and always) with the move, hope all goes well and you get some good news at last
  • oh h i'm so sorry to hear this news, i hope the drs wil be able to answer all your questions and help charlie quickly, and hope and pray your stay in gosh will be short and you will be home with all your family together as soon as possible. sending you lots of hugs k xxx
  • Hello

    Have you heard of the Ronald McDonald house accomadation at GOSH - May help a little with things?

  • I'm so sorry to hear your news, it must be heartbreaking to leave your family, I would be exactly the same, maybe the only way to get through it is to think of little Charlie needing his mummie right now, and abby is such a good girl in a way maybe she knows and understands the emotional upheaval going on at the mo, Charlie needs you and abby has got her daddy at least and just think of wen it's all over and your all together again xx
  • Hi Helen, I know this isn't on your list of priorities atm but hope to hear how you are all getting on soon. We're all thinking about you a lot.
  • Also thinking of you lots this week H. I hope Charlie is getting better by the day and you are managing ok? lots of love xxx
  • Have been thinking of you and your family H - hope the transfer went well and that they bring everything under control soon.

    Big hugs, and I hope you'll soon be home with both your lovely children again soon.

    Hannah xx
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