Cuddle etc


Rose’s teratoma biopsy came back today. Unfortunately it had cells that could become malignant. We were hoping for the benign type. Another thing to monitor.

Her thyroid meds will be increased as tests came back that balance wasn’t right anymore.

They came down too fast on morphine so she experienced a bit of withdrawal. Not too bad – scored 13/40 on their withdrawal checklist but over 10 is of concern so they’ve gone back up and will wean a bit more gradually.

Katie arranged for me to hold her for a while. I know it will sound like I’m torturing myself but I swear Rose could smell me and wanted to feed. She could be quite hungry at moment as morphine withdrawal making her vomit and her feeds still only about half. 12mls now compared to 21mls pre procedure.

I’m going to try to go home for a sleep before pick up today. Yesterday is catching up with me. Thank you for all your messages. Do unfollow blog if you’re getting NICU fatigue. I would completely understand. This is probably like watching the slowest car crash ever at times. Feels like I’m behind the wheel, the doctors are the car manufacturer and poor Rose stuck in back without a baby capsule.

Oh.. She weighs 1.72kg at moment.

Katie’s off for a week while she moves house! How will we manage!? I asked about attachment parenting in NICU today.. answer wasn’t as terrible as I thought it would be (a lot of babies are left to cry when parents aren’t around and I thought it might be policy). The nurses will cuddle babies when they cry if they know parents are happy for that to happen and if they have time.. cuddle away I say!! Tho’ of course this is another cart before horse issue but it’s one that’s been preoccupying me.

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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10 Responses to Cuddle etc

  1. San says:

    Breathtakingly beautiful to see her in your arms precious friend. Loads of love xx

  2. Vanessa Kingston says:

    Gorgeous gorgeous photo Jane. So wonderful to see her in your arms.
    Jas and I would love to come down and visit, even for 5 mins just to give you a real life hug, but understand you probably are too frantic. Let us know if there is any time for us to visit you.(Also, let us know if James would like to come up and stay with us for a few days in the school hols (I know Daniel wouldn’t!!), Jules would love it! Big big hugs

  3. Abi says:

    I understand why you would feel that way, but this is nothing like a car crash for me. It’s just a complete wonder and I love waking up to every one of your posts, I feel privileged to get to know so much of what you’re going through while I am so far away. Amazing Rose has already come through so so much, and so have you. I have no doubt you’ll both continue to do so and you are in my prayers. And also, you’re not torturing yourself, you’re hoping and allowing your instincts to play a part in the ways you want to relate to Rose. I think amongst all the wonderful specialists and best NICU nurses, only one person can feel and do the things you can do as Rose’s mother and you should welcome all those feelings, all that determination, even all that expressing and wanting her to have that one pure thing, as I think you said. I think I’m trying to say there’s room for both having to managing your expectations around each little step forward and some setbacks, as well as continuing to feel it’s ok to hope for things that might be unlikely but aren’t officially impossible. Especially since Rose already has a track record of defying the odds. Xxx

  4. Liz says:

    My darling – what an amazing photo, I am so delighted to see Rose in your arms again. And when this feels like a car crash, we are right beside you in the passenger seats (or at least driving convoy in the car behind). Love you. xx

  5. Carol Young says:

    Dear Jane, what a beautiful photo – I bet you could hardly believe it when you finally got to hold Rose. It’s amazing that you can even find the time to do your blogs but they are avidly followed by all your friends. Thinking of you every day and so admiring of your steadfastness in the light of so many setbacks. Fingers crossed all the way. Love Carol

  6. Louise says:

    My heart melts to see your beautiful girl in your arms, such a gorgeous picture. Stay brave beautiful lady. WIth love, Lx

  7. Lucy Lum says:

    This photo speaks a thousand words Jane, its beautiful and you are both exactly where you want to be! Rose has the most beautiful eyes and an amazing spirit to overcome the odds.
    This is the first blog I have ever answered – so there is still hope for me and IT!!! Love to you all.

  8. Georgia Constanti says:

    Beautiful photo! Beautiful little girl!

  9. Barbara says:

    Your lovely friends have said it all but I love logging on each day for all the news of dear Rose I forwarded your blog to Mary and Michael in Illminster and I know they are following news as well and are praying for a good outcome We are all with you and your mothering instincts sound good to us All our love Barbara and family xxxxxxx & hugs

  10. Kirsty Avery says:

    Hi Jane, It is so wonderful to see you holding Rose, such a special moment. I love being able to follow your blog and see how Rose is doing without waiting for news from Mum. It is amazing to see her progress and how well she is doing. Our thoughts are with you and your beautiful daughter. Xxxxx Kirsty, Dwight, Olivia and Xavier

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