Barely even 24 hours since Ellie had open heart surgery and I am in complete awe of her strength. I knew she was strong and have always had faith in the resilience of children, but her quick progress has been amazing. Today Ellie was taken off the ventilator and is currently on very little oxygen, the line in her neck was removed, her arterial line was removed, she tolerated 2 feeds with an NG tube and 1 bottle feed (calmly finished a bottle in 20 minutes which never happened before). She has been awake and alert and not shy about letting the nurses know when she is displeased. Her heart rate is now resting at a normal 120 and not 170 like before. I caught brief hints of a smile and the normal calmness in her eyes. We are hoping to move out of the ICU tomorrow if all goes well tonight. As I was rubbing her head tonight and gazing at the various tubes that are still connected, marks from the old ones, remnants of disinfecting soap from surgery, I can’t understand why I was ever worried about Down Syndrome and it limiting Ellie, clearly she has no limits. I am so proud of her.
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