We were warned that it can be quite a big change going from ICU to the public children’s ward. No one on one care…… I didn’t mind, I was just ecstatic that she even made it out of there.
The day she moved was the first day she had opened her eyes, the last I had seen them was when she was looking up at me from the ambulance bed.
Her big beautiful blue eyes. She was there, inside, just foggy.
We spent another 7 weeks at the hospital. Rostering every night so she wasn’t by herself. Rotating days between her Nana, Grandma, Dad and myself. All the while still feeding my new little baby boy who had well and truly been put to the back burner.
The first few nights staying there I just stood by her bed crying. I couldn’t stop the crying and the thinking. Thinking about what she was doing before this happened. Why has this happened? How could this happen to Stella. What is wrong with my baby girl.
She couldn’t sit, lift her head, move her body. She couldn’t do anything….. but she was there on the inside. I could see her in her eyes.
I remember thinking back then, I just want her to be able to talk and walk.
That has all changed now. I honestly just want her to be happy.
I remember thinking, oh no, what if we have to live with epilepsy for the rest of her life.
Geez, that would be a dream come true compared to what we actually have to deal with.
So we waited weeks and weeks for results to come back on her bloods.
They told us in the numerous meetings that POLG/Alpers is still high on there list of what she may have.
We didnt hear that, we tried to stay positive and kept working on her. Loving her.
We had daily physio sessions plus occupational therapy and speech therapy.
Everyday she amazed us.
It was tiring, emotionally and physically…..each day back and forth.
It was worth it though as she was here and she was awake and responding.
She recognised her mamma and dada and that’s all we needed to keep going.
Photo taken 4 days after leaving PICU - 9th May 2011