A week ago, she had a cold just like her brothers. And then a fever on and off for four days. And she stopped taking her bottles very well at all. I took her to the doctor because I worried about her dehydration and it turned into a chest xray revealing pneumonia and admission to the hospital for fluids. While there, the doctor showed me her chest xray and how it looked like aspiration pneumonia. So, the NG tube they placed won't be taken out at the end of her stay... it is a new fixture in our lives and will most likely be replaced by a G tube.
"Tube" has been a dirty word around here. We haven't wanted to artificially lengthen her life just so we can keep her. We don't want her to suffer for our sakes. But, if we can get good nutrition into her, it could be life changing. If we start the ketogenic diet and her spasms stop, she could start developing mentally. It's the only viable treatment option we really have. If it doesn't work, we at least tried. And, whether it's me feeding her a bottle or force-feeding solids, or a direct port to her stomach, my baby will be fed. So, it's not the same, right? The doctor says a stomach tube will not lengthen her life. She will most likely die of an upper respiratory infection.
I held her in the hospital rocking chair. I watched her sleep. And, I thought how, eventually, she could aspirate on her own saliva if the signals to close her airway from her atrophied brain get bad enough. My grandmother died of emphysema. I remember when I learned in seventh grade what that really meant. She drowned. Her name was Vivian, too.
While walking to the elevator with Vivian on our way to pediatrics, I called for my Dad. "Please come, Dad. Can you hear me? Please come." I imagined him standing next to me while the doctor talked to me about her lungs being in good shape now, about how without a tube this would most likely happen again and again. He would listen intently. The nice thing about having a father who died before me is that he is not bound by physical barriers. If I have a loving Father in heaven, then He will send to me angels to comfort and watch over me. If I have a loving earthly father who can possibly come to my aid in his spirit state, I know that he will. I believe that he does.
I was deeply, undeniably given experiences that told me when it was time to bring every child in our family into this world. Maybe God did that so that I would have faith that, since He lead me before, He will lead me again... and I will know without a trace of doubt or regret when it is time for one of them to go home. When my Dad was dying in the ICU, the words kept filling my mind, "Why seek ye the living among the dead?"
"Now upon the first day of the week, very early in the morning, they came unto the sepulchre, bringing the spices which they had prepared, and certain others with them.
And they entered in, and found not the body of the Lord Jesus.
And it came to pass, as they were much perplexed thereabout, behold, two men stood by them in shining garments:
And as they were afraid, and bowed down their faces to the earth, they said unto them, Why seek ye the living among the dead?
