**Part of the November writing challenge for themighty.com which has been published here
Our daughter was diagnosed with a rare genetic disorder, CDKL5, when she was only 8 weeks old. This was preceded by a weeklong NICU stay immediately after birth and seizures that were diagnosed when she was 4 weeks old. We as a family have endured multiple tough moments during her 20 months of life so far, however, nothing was more eye opening than the lessons I learned after her 28 days in the hospital when she was 15 months old.
She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special diet for her seizures (ketogenic); whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube. No matter how much we tried to feed her, she was unable to keep anything down. Finally I hit my breaking point and brought her to the ER. When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old. It was a scary time not knowing if we would find and fix the problem. The doctors could not tell us when they anticipated her to be discharged. As the hours turned into days, and the days into the weeks, there was a cloud of darkness that haunted my brain, and I began to wonder, “Is she going to come home?
There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital with might not be coming home with you. There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose. This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation.
I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions. Her stomach was deemed un-useable and her intestines could not handle her nutrition goals. She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart. Her body swelled from water retention and she received diuretics multiple times. Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her. I have learned to understand what it means to not sweat the small stuff”. I learned I do not have time for petty inconsequential things because they honestly do not matter. I continue to have an inner battle in my mind over wanting her to be typical and meet milestones, but to be honest; I am just appreciative when she wakes up each morning. While I will always be haunted by the experience and limbo of her 28 days in the hospital, I know that without them, I would not be able to put life in perspective.
She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special diet for her seizures (ketogenic); whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube. No matter how much we tried to feed her, she was unable to keep anything down. Finally I hit my breaking point and brought her to the ER. When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old. It was a scary time not knowing if we would find and fix the problem. The doctors could not tell us when they anticipated her to be discharged. As the hours turned into days, and the days into the weeks, there was a cloud of darkness that haunted my brain, and I began to wonder, “Is she going to come home?
There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital with might not be coming home with you. There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose. This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation.
I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions. Her stomach was deemed un-useable and her intestines could not handle her nutrition goals. She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart. Her body swelled from water retention and she received diuretics multiple times. Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her. I have learned to understand what it means to not sweat the small stuff”. I learned I do not have time for petty inconsequential things because they honestly do not matter. I continue to have an inner battle in my mind over wanting her to be typical and meet milestones, but to be honest; I am just appreciative when she wakes up each morning. While I will always be haunted by the experience and limbo of her 28 days in the hospital, I know that without them, I would not be able to put life in perspective.
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