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Shocked.

Not in a really bad way, just another shock on top of a series of shocks. Like in an earthquake. The first one is the most damaging emotionally, all the other ones just keep rocking you until you just expect them. Perhaps at some point, all horrible situations turn into resignation and acceptance. My tears are dried up at this point, maybe because a person just can't sustain a constant state of despair and misery. After a time, things need to equalize so that the body can keep functioning. And function I must. Grocery store, seeing to Nika's daily needs, laundry, and pumping. And eating. It's amazing how in the most dire circumstances, the body still needs food. It's almost outrageous. (Thanks though everyone for the casseroles etc. Haven't had to cook a meal in over week!)
The latest shock in the long line of the Leo induced earthquake is the radical changes from the shunt. I can't even recognize the stretched and unearthly face of the son I've gotten used to, in this almost too handsome, quite almost looking little boy. They all said the changes would not be radical once the pressure was relieved. However, he had such astronomical amounts of fluid that the changes are very radical and instantaneous. It's almost too much to bear in such a short time. He has a distinguishable eye brow ridge, and his skin is a beautiful pearly color. His eyes, now more open are a deep velvet navy color. He reminds me now of Nika as an infant, just all boy instead of girl. It breaks my already shattered heart. The other shock is just how squishy and pliable his head has become. Where before it was tight like a blown up balloon, now it's soft, and you can learn infant skull anatomy in a glance, because every single skull plate is distinguished and you can move them around with a finger. If it weren't my son, I would be medically fascinated with the process. As it is, I just want his head to get normal as soon as possible. It will never be a "normal" size, but it won't be such a huge radical difference as before.
Anyway, the next task for Leo is to eat, eat and eat. Yesterday he didn't eat very much, which I am hoping has to do with his post-op state. Also the pain meds might have affected his appetite. Hopefully, hopefully, the shunt will relieve enough pressure so that his suck will be stronger and more efficient. That is what I am praying for. Also he is at a high risk for shunt infection because of all his issues and the fact that his skin was stretched so thin, you could even see the shunt valve through it. We don't know what we would do if it got infected. Please pray for our continued strength and discernment in these gray and troubled waters. Your support and prayers are our footing and foundation. Thank you, thank you, thank you!
Love his hands!!!
(Pre-op. Will post some post-op pics soon.)
She loves hanging in NICU. "I love babies, I'm a good big sister."

Comments

  1. Prayers continue! Thanks for sharing the journey with us.

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  2. We are all praying for Leo. I have been showing Michael your pics, and now he says, "I want more see baby yo-yo" (which is the best he can do for "Leo"). We love you all and we wish we could be there with you!

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  3. Note from a family member:
    Since Leo came to our life, the quality of time has changed. Every day is a whole season, every minute stretches as a day. Every moment with him is precious, chiseled out, and appreciated. We love you little brave heart!

    ReplyDelete
  4. I'm so glad the shunt relieved the pressure in his head! I read this blog everyday and all of you remain in our prayers.

    ReplyDelete

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