Friday, June 12, 2015

A memory

I found this picture today and it made me smile and then it made me think of a very chaotic time in our lives. 

This was Jude's second birthday cake. We had an entire Hungry Caterpillar theme for his party complete with this incredible cake and great decorations. Unfortunately the party never happened because the night before we rushed Jude to the hospital. It was his first round of aspiration pneumonia and we learned that weekend that Jude would never eat by mouth again. We took his cake to the hospital and let the nurses, doctors, and guests enjoy it in his room. 

Jude was to sick to undergo surgery so we had to take him home with an NG tube and schedule the surgery for his feeding tube. I remember it being so hard to let go of the normalcy of feeding my child with a bottle and by mouth. Now I cannot imagine our lives without a feeding tube. I cannot fathom not filling bags full of formula that connect to his GJ button. Aspiration pneumonia has been Jude's nemesis and the condition we fight at least once a year if not more. Jude aspirates on all liquids no matter how thin or thick so even his secretions are an issue. By the way putting an NG tube in your child is the WORST thing! Mike had to do this because I lacked the courage because I felt like I was inflicting pain on him. I understood it was providing him nourishment but it was such a hard situation. 

I am grateful Jude has been such a fighter and the lessons he has taught us but I dislike the struggle he has had. 

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