Namine is doing slightly better today. She’s still in pain, yes, but she’s showing more of herself, in spite of being groggy from the morphine. She gave kisses today at lunch, and signed “I love you” to me, Jessica, and other family members.

Cardiology decided to give her a transfusion because her hematocrit was low, 35. A normal number for girls is 38, so it would be considered low anyway, but anything under 40 is low for Namine. This always happens to her after surgery, due to the blood loss. Her O2 has been low since taking her off the oxygen, too, and this is not unexpected, either. Namine’s saturation level is always lower when she’s in recovery, in pain, or uncomfortable. I’d say all three fit the bill here.

So they’re keeping her at least one more night. There are several obvious reasons: her low O2, the transfusion (after which they always like to keep her at least 24 hours), low appetite (although she did drink half a soup and some juice), and, of course, pain. All we can do is a day at a time, taking care of her to the best of our abilities. The rest we leave to her and God.

Last night and this morning, if Namine wasn’t asleep, she cried. But the word crying doesn’t really do justice to the sound Namine was making. It was pain, sadness, and anger. It was more yelling than crying. It wasn’t just wailing. You could say that this is pure conjecture, because she can’t talk yet, but I know my daughter.

Part of what calmed her down was music. Jessica and I have been singing hymns and children’s songs to her since yesterday, but they haven’t seemed to soothe her very much. But then I had an idea.

I have a whole bunch of music on my phone, a select playlist of soft and lullaby-like songs which I always turned on during her trach cares. She doesn’t have a trach anymore, so doing her cares (just her jaw scars and g-tube, now) has taken significantly less time, but I still turn on the music and dance with her for a while each night. So I left my phone with Jessica and Namine at the hospital today, leaving it plugged in and playing Namine’s playlist. I laid on the bed next to Namine (they had given her a huge adult-size bed, so there was plenty of room for the two of us) and sang the first song on the playlist (titled “Only Hope,” by Switchfoot). Up to this point, Namine has just been crying, and when asked a question, either a nod or shake of her head. But when the song came to an end, Namine turned her head to me, and said the first words she’s spoken since coming out of surgery: “One oh.” (Only hope.) Then she nodded at me. She smiled, and signed “I love you.”

I live to see her smile.


  1. Awwwwwwwwwwwww! What a doll! Did they actually say that she’d have to undergo anesthesia every 2 weeks for the casting???

    Jacob does bouts of Botox/serial casting where we get Botox in his hand once for his tight fingers and then we cast his fingers weekly for a few months and they gradually stretch. I cannot believe they’d put her through this surgery and NOT tell you two about needing anesthesia every 2 weeks until January!!! That is ridiculous! Do you think instead of the every 2 weeks thing, she could heal up and then do another surgery in 6-9 months to stretch it the rest of the way??? Just trying to brainstorm.

    I totally get what you mean about seeing them in pain!!!!!!!!!!!!!!!!!!! Every time we get to CHW early in the A.M. for a surgery, I get really worried and shaky and wonder if I am doing the right thing, because nobody is FORCING us to do it… we are doing it of our own free will. It sounds good right up until that A.M.!!! But, it does all come down to us wanting to give them every chance possible. You two always do what is best and you will do that again. Your decision might not be the same decision that someone else would make, but she is YOUR child…. and God DOES lead his children in the direction that He wants us to go.

    Thinking of you and looking forward to an update when you have the time.

    LOTS of love and prayers from Jen, Jeremy & Jacob

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