All Mixed Up

Except for ten scary minutes, Julianna had a great weekend.

The good: J is getting good sleep, and her heart rate is normalizing. It was too fast before, a sign that she was uncomfortable and working hard to fight her latest battle. We were able to restart her feeds, albeit at a lower rate. She played and played.

The bad: A few hours into her full rate of feeding on Saturday, J threw up. Her feeds go into her small intestine, so there’s not much in her stomach to come up. A little bit can be devastating, though,so we were alarmed. On Sunday, we kept her feed rate down, and things were fine.

Julianna got her g-tube (feeding tube to the stomach) placed in June 2014. It was supposed to make feeding easier and safer, but for some still unknown reason, it didn’t work. J couldn’t tolerate g-tube feeds and we lived with the constant fear of her throwing up.  We tried everything – different formulas, rates, body positions, medications. Nothing worked: she still threw up every single day. It was a difficult time. We knew that she was at high risk of aspiration but were helpless to stop it.

After four months, it happened and J ended up in the PICU again with aspiration pneumonia. The feeding issue was addressed with a G-J tube (a tube that lets us feed her through her small intestine, or jejunum). It’s not a permanent fix, and we were warned that it may not work at all —  but it was really the only option. Fortunately, it has worked beautifully. Her G-J tube has been in for fifteen months now (I think that’s some sort of record), and until a few days ago, we had no problems with feeding.

I’ll admit, the thought of going through more feeding problems makes me nervous. It is scary when a vital act (feeding your child) is dangerous. We have to watch her even more carefully now, because these events occur suddenly and silently.

I learned a while ago that control is an illusion. Julianna’s care is highly regulated. We talk about BiPAP settings, heart rate, liters of oxygen, millimeters of water, how much saline to put in her nebulizer. We aim for perfection, but nothing in this world is perfect. We will never be enough – but we have to keep trying.

There’s a temptation when writing sometimes to shove things into a nice package and put a bow on it — Here. The stuff inside isn’t so pretty, but I wrapped it up for you. Does that make it OK?

 Our reality is more complicated. The ugly and the beautiful are all mixed up. She fills my heart, but also breaks it. The status quo is tenuous, and I’m scared of change. On most days, the beautiful and the delightful are stronger than the ugly and the fear – and that has to be enough.

For the last few days, she has talked a lot about food – she wants to eat pretzels, biscuits, ice cream, salt, crunch: “Does anyone have some food here?? I LOVE pretzels.” She hasn’t gotten her usual volume of tube feeds recently, so I thought this explained all of the food talk. She told me in her matter-of-fact-without-any-self-pity way that she is always hungry. This is the strength that breaks my heart.

As always (thank GOD!), she wants to play. This is not really a pretty bow. It’s her world, and it has constant hunger mixed up with courage and magic. If I let her draw me in, it is enough.

On Friday, Julianna was an Asian princess with PJ’s from Singapore (Thank you, W!) and a silk fan blanket.

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On Saturday, Julianna decided that her toys needed a spa day. Her unicorn and giraffe got pedicures. She insisted that they take naps afterwards, because she knows that spas are supposed to be relaxing. Afterwards, she defended them valiantly against the unicorn/giraffe “friends” who disapproved pink and blue hooves.

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20 thoughts on “All Mixed Up

  1. Such truth and wisdom about the illusion of “control”. Julianna’s capacity to embrace the present continues to school us (church us). Thank you for sharing her profound light and your family’s tender walk.

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  2. Thank you for sharing in such a perfect way. You do not know the gifts you give. and perhaps don’t know (yet) the gifts you receive. I am praying for your strength and your heart which is so full of gifts

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  3. Michelle,
    As always you are doing an amazing job as
    both a mother and a doctor. Very pleased
    to hear Princess J is more comfortable and
    playing.
    Sending all of you lots of love, positive
    thoughts and prayers!
    God bless,
    Valentino
    Monday, Febuary 1, 2016
    11:50am

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  4. Thank you for sharing your daughter with us. We pray for her strength as she needs it daily as well as yourself; mom & dad. I think of her everyday. Her strength and strong will are what fortify me. Much love sent to you beautiful Princess!

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  5. Michelle, I cannot believe you think you can never be enough! You love your daughter with all your might, and she knows it. You are doing everything in your power for her. You are more than enough, honey. ❤️❤️

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  6. Keeping good thoughts for your family. I’m always touched and inspired by your writing and your family’s spirit and grace. Thank you.

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  7. oh wow I wanted to comment but then I read the comments that were left & realised Kathy Grey already said all that I’d wanted to 😉

    & wow giraffe pedicures, super cool! Haha errr, now I’m wondering if I can still be (virtual) friends with J if I have never had a pedicure(! would you believe that, lol) because I feel too undeserving of such luxury (!) .. oops. But you know what? Maybe I should make that my next goal/Moment to make, get a pedicure over the Chinese New Year festive season, then share it with/show it to J. Hehehe ok sounds like a plan already.

    (Because .. yes – most of the time I feel that pedicures are princessy, extravagant indulgences for which I am undeserving .. )

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  8. oh, sweetie! My heart is breaking at her always being hungry. I can’t imagine. Julianna, you are always so beautiful in your princess bed and fashionable clothes! I also love the wise, funny, and inspiring things you say. Thank you for brightening my life. And Michelle, thank you for your example of true motherhood and self sacrifice in love. You teach me so much. ❤ Thanking God she is ok now. Praying for a good week. -Lily

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  9. I read your story in people magazine today and my heart broke for you and your family. I could not even imagine the hell you have been living through and yet the brightness your beautiful J. brings into yours and so many lives through your writings. She is wise beyond her years and her unwavering faith is evident. My prayers will be with all of you.

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  10. The ugly and the beautiful are all mixed up. I could never have said that better myself. What a profound way of saying it. These medically fragile angels they sure do make your heart and break your heart, don’t they? Thank you for keeping your writing open, honest and completely on point.

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  11. You are all an inspiration. J is a remarkably strong, courageous and beautiful individual. My thoughts are with her from this day on. My thoughts are with you and your family as well. Devotion, patience, love and a deep understanding of empathy is what draws me to your story – as well as the beautifully written posts. I was unfamiliar of this condition and its severity until I was directed to your blog. Thank you for sharing your life with us and bringing to CMT light .
    Please continue to take good care.

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  12. Prayers and lots of strength for you and Julianna. You are always in my prayers. Thanks for sharing your life with us. You cannot even imagine how inspiring Julianna and your family is for us .

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