Monday 2 November 2009

A Plan (Of Sorts)

We've been quite down these past few days, and also quite frightened by the enormity of what's happening, so we've been taking it in turns to try and distract/cheer each other up (Paul's much better at this than I am).

But today felt better - I think because we were being more proactive and trying to get on top of things that had been niggling away at us. I arranged with the new neonatal manager for Alice to have her own cot next to Maggie so she's no longer laying on the floor in her carry cot (although she loves her carry cot - thank you to Emma for this! xx). And then there was an hour-long consultation with the speech therapist - admittedly interrupted several times by Maggie's oxygen levels dropping and then also by a rare crying jag from Alice - who has armed us, and the nurses, with exercises to do with Maggie to try and help her develop her swallow and suck reflexes. She was positive, honest, kind, patient...probably would have done Paul's head in but I liked her. And I liked that she's given me something tangible to do to help my little girl - and that she pointed out that my fears of a future of tube feeding are a bit hasty considering that Maggie is only three weeks old. There's no escaping that it's a worry that she hasn't developed these reflexes, but it's not a done deal yet and that's what we need to focus on now.

Then it was a discussion with our consultant about their course of action for Maggie - and again a reminder that it's going to take time to know what this is. A week of the oral exercises and stimulation followed by another assessment, trying to increase her feeds to two hourly and keep them there, trying to keep her more stable so she needs less oxygen support. And maybe us learning how to tube feed in case it does come to that...but we're not really up to that reality at the moment and keep shying away from it.

Alice was a part of our active action day too - in that we finally gave her her first bath. And it was very sweet - from Paul preparing everything and guiding me on how to do it (I was completely clueless) to Alice's little round face taking it all in so peacefully and enjoying floating in the warm, bubbly water. Bless.



7 comments:

  1. It doesn't seen possible that the babes are 3 weeks old. Time must feel very warped right now. I'm vicariously enjoying your children from here. I love the smell of babies!

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  2. Ooohhhh.....Naked Baby Alice!!! I thought we were done with the nudes of babies......as I recall through childhood, I was the only one who got photographed taking a bath in the sink.....hmmm......We are an impatient bunch, aren't we Sis? Give it some time....help and let Maggie do her thing. I agree with Sarah.....doesn't seem possible that they are three weeks old, yet for as alert as the look, they seem months old. Ahhh good ole time for ya there.....speaking of time.....we're less than three weeks away from their first Forbush family visitor! Yeah, that would be me.....

    Love to you all

    xoxo
    Mary

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  3. look at Alice! She's turning out...errrr...round! Love it! First times you do think about every action involved. Nurses at the hospital tell you to do it a certain way. But then you get your own way and that seems to work equally well! There's no points for "doing it right" babes. There's no such thing.
    I'm glad you could do something to help Maggie. It must be so heartbreaking to stand at the sidelines. One step at a time, as you said. And that's bloody hard!! I've never been good at it, but a child - any child - forces you to rethink everything. You'll all find your way to make it work, I'm sure. Until then, keep doing as you do. You have each other, and a healthy sis for Maggie, that's good. She'll get all she needs. Lots of love from Antwerp and a wet kiss from Analou x Wini

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  4. Beautiful photos of a beautiful baby and her gorgeous Mum. We wish we were close by to pop in and visit. We selfishly still hope that one day we'll all live in the same city, but in the mean time, know that your New York friends wait patiently each day to read the progress of Maggie and Alice. Love you, love you, love you both!
    xo,
    robynne

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  5. You haven't seen the half of it Winni. I saw the twins today and I think Paul and Shannon have been photoshopping Alice thinner...

    Was great to see the girls and Shannon. I thought everyone looked lovely, very cute. Shannon in her little pig tails, the lovely nurses in those green smocks where you wonder if they are naked underneath.. Fabulous!

    Russell

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  6. Delightful.

    Those Alice-in-the-bath pics really made me smile.

    Take care guys - much love from Darren.

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  7. hey there!

    the pics of alice are fantastic! i wonder what she is thinking when she is laying there in the warm bubbles just looking up at her mom? i am sure its pure love. the same you are thinking when you look down at her.

    when mary goes over, she will have to take a bit of love from me too. i wish i could go! someday soon though.

    love you both!

    bob

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