tincture of time

Sam here:

As we mentioned, Ruben was getting some tests yesterday to assess how his heart, lungs, and diaphragm are doing. They found that his right diaphragm is sluggish, probably from a nerve getting stretched during surgery. With time this should heal, but it’s hard to say how long. Also, his heart is still healing up; it turns out he has some leaky valves in his heart still (which could get better on their own but means he might be taking some heart medications for a while) and has some blockage resulting from the surgery which may mean another minor procedure in the future. As a result of these things his lungs have been a little congested and his heart has been working hard. This is why it’s been challenging to take him off the pressurized oxygen they have him on (uncomfortable for Ruben).

We (Ruben, myself and the medical troop at his command) had a rough evening up here yesterday (Maddy went home to get some needed rest and I spent the night). After a long afternoon of tests he ended up having a lot of trouble keeping his oxygen levels up, he was breathing really hard and was running a fever. It also seems like the incision in his chest is slightly infected. All of this led the team to take him off of the breast milk, hit him with a huge shot of antibiotics, and almost put him back on the respirator (not to be confused with the machine he is on now which adds positive pressure to his lungs but does not breath for him) which would have been a huge set back. But after some tinkering with the machine and some pain meds he settled down and had a very peaceful night. He is going to go back on a small amount of breast milk this morning and seems to be resting easy as of now.

I think our time-line is stretching out up here. We had hoped to be home before December, but that does not seem likely at this point.  It’s hard to know, so we’ll continue to take one day at a time.

For now, we just want Ruben to be able to progress to the next phase of healing. The goals for today are lots and lots of rest and good breathing. So far, he’s doing great.

Thanks everyone for your support … we’re doing our best to stay positive and patient. Ruben will heal up, it’s just taking time.

(btw – the peeing project has been successful. They are happy with his urine output. All our collective peeing paid off!)

they let Maddy hold Ruben yesterday for the first time since surgery


22 thoughts on “tincture of time

  1. What a blessing we live in the era we do, with all the modern medical miracles to help your little miracle. He’s so strong; he’s proved that many times over, and like you say, all things in good time. That photo is so moving…. We’re thinking of Ruben every step of the way, and love you all. J, P, E, Z

  2. Beautiful. I can only imagine how comforting for Ruben and Maddy the moment must have been. We continue to keep the three of you on our hearts and minds.

  3. I read this and find I drew a large breath when I finished. We pace with you. wait with you, pray with you, hope with you, love with you. The strength will come : one day at a time.

    peter and susan

  4. Yes, what precious and satisfying images – thanks for including us. Wishing you much patience and sustained strength on these long days and nights. Here’s an Iyengar quote for Ruben’s ongoing breathing project: “The breath must be enticed or cajoled, like catching a horse in a field, not by chasing after it, but by standing still with an apple in one’s hand.”
    Our love keeps coming, Sarah & Felicia

  5. Dear Maddy and Sam,
    Thank you so much for sharing your journey. I have fallen in love with Ruben, and I check on him every day. I think about him often every day and send healing and rest and strength to him. I cried today when I read that Maddy was able to hold him.
    Tana (Nana Jo’s friend)

  6. Ohh, you’ve got it right, one day at a time. that’s the only way to deal with all this. My body aches for you, over a week without holding the champ! And what joy to hold him. thinking of you often

  7. I’m so glad Maddy got to hold him. It’s good for her and especially good for Ruben-holding and touching definitely helps the healing process. Thanks for sharing the pictures with us. Love you lots-we will gladly pee, breath, sing or anything else for baby Ruben!
    Love, Annie

  8. Dear Maddy and Sam, That is the most amazing picture. I hope you get to hold Reuben more and more more. When I used to be very scared for one of my children or for my parents I would say to myself “He okay right now” ” He is not in pain right now” Right now he’s okay. Tht would help me get through it a day at a time. I am going to take deep cleansing breaths every single hour to help him breathe.
    Susan D.

  9. What a piece of work he is, and what amazing angels you are.
    How beautiful a mother and baby.

    Sending so much love the microbes will scurry away …
    Jan and Peter

  10. he is an amazingly resilient boy with strong and loving parents–we’re sending healing thoughts in your direction 24/7–ben/ari

  11. We love you, all three. The bonds that get built in the midst of difficulty will serve you for a lifetime. Our hope is that this time will pass and be just a footnote to some great Ruben stories.
    Moe & Yvonne

  12. Big love and holding you all in our hearts. it’s a long wearying journey but you’ll get there.
    Wonderful to see Ruben in Maddy’s arms.

    Love Rosie and Deborah

  13. My heart just leaps every time I read one of these updates and there’s any bit of good news, but I can’t imagine how hard this must be for you both. Thinking of you and wishing continued strength for your whole family. -Alanna

  14. Reading all the expressions of love here is so transportingly moving. There are so many who love you — all 3 — and who get strength and hope from the photos and send you such astonishing clear love, Me too. Rickie

  15. I’m so glad you were able to hold Ruben today! I can’t imagine how good that must have felt for him (and you!). Ruben is such a powerful healing warrior. He is tough and strong.

    I did a calculation and based on the U.S. census data for names, the statistical odds of three young Rubens being in the same room (given only three people) are about 1 in 8.3 million. While I generally am not superstitious, I think this is too unlikely to be a coincidence. The Rubens are coming together to combine their healing powers!

    Thank you so much for your blog posts and photos, keeping all of us there with you and Ruben even if we are physically apart. -Clay

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