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A Day in The Life: Special Needs Newborn

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Juliannadb

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Stella is 2 months old and has some special needs that make my day very busy. (She's worth every second of course) Stella has brain damage (severity currently unknown) from a birth injury. As a side effect she silently aspirates when drinking. Which in short means most of the milk/formula goes into her lungs and her brain doesn't tell her body to cough it out; because of this Stella has a G-Tube feeding tube. On top of that she has severe reflux, Sandifers Syndrome, a milk protein allergy and suffers from frequent seizures.


STELLA'S HEALTH UPDATE!:
https://www.youtube.com/watch?v=WTcPs...

UPDATED A DAY IN THE LIFE:
https://www.youtube.com/watch?v=qUngt...

Frequently Asked Questions:

Q:Why does she have a feeding tube?
A:Stella has brain damage as a result of a birth injury. Her brain did not tell her body to cough when milk "went down the wrong pipe" aka went into her lungs. This is called silent aspiration. Aspirating can lead to pneumonia which can be deadly in infants.

Q:Will she have the feeding tube her whole life?
A: Stella had her Gtube removed at around 5 months old once she passed a swallow study and it was deemed safe to feed her orally.

Q:Do you have a home nurse:
A:No we did not. My husband and I handled all of Stella's care.

Q:Why are you cleaning around her Gtube?:
A:In the video I'm applying a prescription cream for granulation tissue. Under normal circumstances you do not have to clean the gtube so often.

Q:(but totally not a question) Omg you didn't wash your hands after a diaper change?!
A: I did. You're watching an edited video, watch how after the diaper change things shift and things appear/disappear. *facepalm*

Q: Why doesn't the father work?
A: This was a Saturday he had the day off. The father is in the military.


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posted by nononokeqt