Angelina's Journey
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?
Biding our time
Another good day
2 months
Angelina's Journey
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?
Biding our time
Another good day
2 months
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

And now we work

And now we work

March 03rd, 2019

Angelina is doing very well with the trach. She's being kept comfortable with meds while she recovers from surgery. Her...

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Not Great News

Not Great News

February 20th, 2019

Angelina had to be intubated again today. She continues having the episodes of decreased O2 sats, and continuing to bring...

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G-tube feeding and seeing the lip

G-tube feeding and seeing the lip

February 16th, 2019

Angelina is 16 weeks old now. Man, the time flies and drags at the same time. They started using her...

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