We checked into the ICU's transitional care/special needs unti yesterday afternoon. Before long, she was fitted with a bi-pap mask, and started on the machine. We did one trial nap off the monitor, and it was bad. Little miss desats sooo often. On the machine, she sats above 97. For the first night in maybe her whole existence, ellie spent the whole night getting real sleep and staying properly oxygenated. She doesn't fuss, it's as though she knows it is helping her.
Our doctors are thorough, and while I love that, it also scares me. Ellie doesn't present with failure to thrive, at all, she is just a perfectly formed, delicious (not my word) baby, who is micro-sized. Medical genetics is being hauled back into the picture to see if there is something else going on in addition to PWS. Heaven help me, I don't know if I could handle that.
Scratch that, I can. I have no choice.
Today, our ward neighbour was diagnosed with a malignant brain tumour. I thank the universe for gifting us with our healthy baby girl.
It's heavy here.
In addition to genetics, we are back with neurology, who previously "graduated" us. Apparently, Ellie's degree of apnea is highly unusual, especially given her general good tone, and lack of tonsil/adnenoid problems. I am staying away from guessing. I don't want to know.
Ellie is being fitted with a 24 hour holter monitor, because her heart rate isn't as variable as "normal". Today she had an EKG, tomorrow an echo cardiogram.
Poor little thing is covered in wires. The holter monitor, two sat probes, heart and breathing monitors.
Sigh. One day at a time. It is all good.
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