counting the cubic centimeters

hi everyone,
Your peeing is working like a charm again – thanks! They would like Ruben to be peeing at least 30 cubic centimeters (ccs)/hour and so far for the past 4 hours, he has been peeing between 50 and 75 ccs/hour. This is fabulous.

Meanwhile, we’re just quietly standing by.

Because Ruben’s chest is open, he is intubated (a machine is breathing for him) and he is not allowed to move. This means he is totally still, not awake, on a lot of medicine, and very very very puffy. We miss our little wiggly baby, but we know he’ll be back – just a few more days (more or less).

It helps that we’ve done this before. We’re feeling significantly more human right now than we were this time last surgery.

We have miles to go, but we’re getting there.

Plus, this time, we have a nicer, quieter spot with a river-view.



15 thoughts on “counting the cubic centimeters

  1. Thank you for this update. It must be very, very hard, but things are clearly going as they should. Dear little Ruben – he’ll be awake and wide-eyed soon, soon – keep brave (you are all so incredibly brave) and we will keep directing our thoughts to you all, and Ruben’s strengthened and healing heart. Love from Felicity and Richard

  2. we are glad to hear he’s making good progress. he’s a beautiful, tough, resilient boy–with a big community in his corner! love, b/a

  3. glad it’s going well. isn’t is amazing how your perspective changes with experience and time? you are an awesome family. sending healing thoughts. anne e

  4. Sending Ruben and both of you love and healing energy, may this time pass quickly til you hold your little champion again. Love, Lee and Ravi

  5. Thinking of you all many times in a day. Thanks for the updates– it helps. It always amazes me that you take time- in the midst of THIS- to think of all of us out here. You guys (3) are all so strong. And human too. I send many blessings, love and visions of wiggliness.

  6. Nice work Ruben. This Reuben doesn’t need a diuretic either. All our love and wishes Maddy and Sam. You deserve
    Congressional Medals.Yaakov

  7. Hello Rubenandsamandmaddyandgranparents,
    Like you, I’m waiting for the docs to say, “We’ll be closing now”. Meantime, your report makes me feel that all is as well as it can be. Kathie and I run to our laptops first thing every morning when we get up and first thing when we come through the door after being away. I sure appreciate your keeping us informed. We’re with you. Love, Albert

  8. wepa!!! doing the pee-pee dance! a million gazillion ccs of love & song dedicated to ruben y familia last night at unison 🙂 matteo

  9. Thinking of you, and dedicating my dancing to you! I am glad you have a view of the beautiful river. We’re with you, Ruben, Maddy and Sam!!

  10. We’ve been visiting lots of rivers today, long wide green ones, slender blue, grey shallow stony – and thinking of fluids quietly slipping away…. now back by the sea with tides ebbing and flowing. Good to hear that the little one is doing his work well and that you have some solace as well. Much love and we’re keeping watch from Jan and Peter.

  11. Peter says thank you specially for the picture with all the machines which are also keeping watch and providing sustenance for little Ruben. His anaesthetist’s mind appreciates seeing the environment you and Ruben are in. xxxx J and P

  12. Even though Ruben is so grogged out on meds, he knows you are there and is so lucky to have such calm and loving vibes surrounding him. Keep up your strength..we are all with you. Nancy

  13. Thank you for keeping us Ruben fans up to date. I feel like I know him, but can’t wait to meet him… I’m drinking, peeing, and cheering for him. And for you guys.
    (Well, the drinking and peeing part is especially for Ruben.)

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