Happy (belated) Mother’s Day!
Eleanor got her vent tube removed on Saturday and is doing WONDERFULLY! Behold the power of steroids!
They placed her on a CPap nasal cannula instead of the elephant mask, but she still is actively annoyed with the prongs in her nose and has figured out that she can remove them by smooshing her face against anything and jerking her head away. She’s too smart for her own good. She has also already begun weaning her CPap support settings and hangs out at room air (21%) oxygen almost all of the time. She is breathing comfortably unless she is super angry, and who really breathes well when they are sobbing anyway?
Doctors have discussed moving her to Vapotherm (this is a high flow nasal cannula that makes oxygenated gas that pumps into the lungs and is a great oxygenation tool and less invasive than CPap...read more here: https://vapotherm.com/hi-vni-technology/) on Thursday. This makes Mom and Dad really nervous that they are pushing her too hard before she is ready, so we hope this is the best move for her.
Now that she is off the vent, we can pick her up without assistance from nurses. Eleanor also got her first go in a swing and she loved it! We are so happy she is doing so amazing, but are trying not to get too excited because Eleanor always keeps everyone on their toes. It feels like we are just waiting for the ball to drop, though her primary care nurse says they usually get to a point where everything is up and up and no more setbacks, so perhaps we have reached that point!
In other news, Eleanor is quite the vocal child. You can’t hear babies cry when they are intubated, and boy oh boy has she been making up for lost time. We decided it is all 'roid rage-related; she is cranky as all get out after 7:30pm, and typically screams herself to sleep.
She has what is possibly her last eye exam today (as long as they look good) and is eating 70ml a feed! Pushing 8lb 2oz!
Eleanor got her vent tube removed on Saturday and is doing WONDERFULLY! Behold the power of steroids!
They placed her on a CPap nasal cannula instead of the elephant mask, but she still is actively annoyed with the prongs in her nose and has figured out that she can remove them by smooshing her face against anything and jerking her head away. She’s too smart for her own good. She has also already begun weaning her CPap support settings and hangs out at room air (21%) oxygen almost all of the time. She is breathing comfortably unless she is super angry, and who really breathes well when they are sobbing anyway?
Doctors have discussed moving her to Vapotherm (this is a high flow nasal cannula that makes oxygenated gas that pumps into the lungs and is a great oxygenation tool and less invasive than CPap...read more here: https://vapotherm.com/hi-vni-technology/) on Thursday. This makes Mom and Dad really nervous that they are pushing her too hard before she is ready, so we hope this is the best move for her.
Now that she is off the vent, we can pick her up without assistance from nurses. Eleanor also got her first go in a swing and she loved it! We are so happy she is doing so amazing, but are trying not to get too excited because Eleanor always keeps everyone on their toes. It feels like we are just waiting for the ball to drop, though her primary care nurse says they usually get to a point where everything is up and up and no more setbacks, so perhaps we have reached that point!
In other news, Eleanor is quite the vocal child. You can’t hear babies cry when they are intubated, and boy oh boy has she been making up for lost time. We decided it is all 'roid rage-related; she is cranky as all get out after 7:30pm, and typically screams herself to sleep.
She has what is possibly her last eye exam today (as long as they look good) and is eating 70ml a feed! Pushing 8lb 2oz!
Learning to breath when I'm sobbing has proven to be a challenge, but, if Eleanor's like me, achievable. Another trait we, Eleanor and I, share is that we're vocal. Let's hear it El!
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