Angelina's Journey
Granulomas are no fun
Months later
Maintaining
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?
Angelina's Journey
Granulomas are no fun
Months later
Maintaining
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?
Overview

Angelina's Journey

While expecting Angelina, we found out she would have a cleft lip and likely a cleft palate. I had to be induced at just under 37 weeks, due to pre-eclampsia and her diagnosis of IUGR. When she was born in October 2018, she was a lot worse off than anyone expected. She also has Pierre Robin Sequence, caused by defects on her 7th and 10th chromosomes. The PRS is characterized by a small chin/lower jaw, ill-placed tongue, and breathing difficulties. After birth, she was taken to the NICU and later transferred to a larger, better equipped NICU for her needs. Due to the PRS she had to have an operation on her jaw (mandibular distraction) to stretch it, and open her airway. She still...

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Latest Journal Entries

Admitted again

September 02nd, 2019

Angelina decided to close out August with a bang. Ever since returning to rehab after her last hospitalization, she has...

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Follow up

August 14th, 2019

Today, they scoped Angelina again. They tried to downsize her trach tube to see if it was just "too big."...

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Granulomas are no fun

Granulomas are no fun

August 13th, 2019

Before Angelina left the NICU, she had a granuloma in her trachea, below the level of her trach. They treated...

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