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Empty Handed

Reflection: I remember walking out of the hospital with Nika, 4 years ago today. It was an absolutely glorious late summer day. The sun was bluer then blue, and the air tasted like crystal to our hospital air overloaded lungs. Nika was sound asleep in her carseat and on our way to the car, we wandered about on the grass like ship wrecked sailors setting foot on solid earth for the first time. It was incredible. Today we left the hospital for the first time after Leo's birth. The weather was cool with bits of sun breaking through. We walked slowly as if quicksand pulled on our feet. Our baby lay behind, in the arms of the competent NICU nurse. Empty handed, broken heartened, and in pain, I wondered how the world could go on around us, unaffected by our tragedy. On the drive home with the sun breaking out between the clouds and through the glittering trees, I saw it was beautiful. It was beautiful, but magnified into almost painful proportions. Like a kaleidoscope. I think that it was take a long time for the world to look normal for me again.
Update on Leo: He had a MRI last night so that the neurosurgeon could determine where to put the shunt. The surgeon agreed to a shunt as a comfort and management measure, as opposed to a treatment measure. The shunt will not fix anything in Leo's condition other then control the fluid in his brain so that his head will not grow larger, and to relieve some of the pressure that he might be feeling. There is also a chance that his head will get somewhat smaller, since the fluid pushing his cranium plates apart will lessen. The surgery will probably take place sometime next week. Leo is the favorite at the NICU. Because of relative low maintenance care, i.e. not plugged into anything, most of the nurses spend their breaks holding him and loving on him. Feels like most of the hospital comes in to check on him and give him a kiss. He loves to be held and snuggled. Though he is pretty patient when lying on his boppy in the crib, propped up by numerous pillows, gel pads, etc, he is way more content and comfortable to by snuggled up by someone with loving arms. He eats better. My milk is coming in, so I am pumping and bringing in milk for him. He still isn't taking even a quarter of what a growing baby should be, but everyday is different, and he seems to be steadily getting better at sucking. He has progressed from a syringe to an actual bottle.
Please pray for him and us, as everyday is filled with new uncertainties. What is certain however, is that Leo is calling the shots, and all we have to do is follow his lead. I have to trust that Leo has a plan and so far, he hasn't proved me wrong. Love to all of you!

Comments

  1. Indeed! He even started his own birth earlier than doctors' schedule, mercifully saving his family from more exhaustion and agony of waiting for another five days. "My grace is sufficient for thee: for my strength is made perfect in weakness" (2 Cor. 2:19)
    Dear Anka, hold on strong mama! We are all with you in the world suddenly shuttered into pieces. And the little angel Leo is going to guide us through...

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  2. dearest anna! my thoughts and prayers have been with you amd your family as i have been following your story these past few days. it seems little leo the lion has been quite the blessing to everyone who has been lucky enough to get to meet him! i pray for strength and peace of mind for you all as you go through this difficult time. you are all an inspiration and an amazing orthodox example.

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  3. I am in awe of how you have been able to trust in His Will and His Mercy. Little Leo can not but do His Will and in that you have found true guidance. I love you both, I admire you both, and I am constantly amazed at your strength and the warmth of your hearts.

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  4. Amazing Leo, Anna, Justin, and Nika! Love you all! Don't think we can tell you enough. :)

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  5. Anna, Justin and Nika,
    Little Leo is beautiful. He is a beloved child and you are teaching us all about grace and the mysteries of our loving God. Sending love to you and hearts full of hope and wonder. love, susie

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  6. We read your blog every day and feel very close to you all. Alice Johnson called yesterday, so I have another little connection with you. Our continuing love and prayers for all of you. I love little Leo's hands, too. Leesha

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