Angelina's Journey
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
Merry Christmas
Christmas Eve post op
2 good days
Dec. 22
Angelina's Journey
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
Merry Christmas
Christmas Eve post op
2 good days
Dec. 22
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

Sleep study

Sleep study

January 15th, 2019

So Saturday night after removal from the vent, her right lung collapsed... Again. By sunday  morning, it was back to...

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Well

Well

January 12th, 2019

so it wasn't Thursday like we were planning, but she has been extubated as of today. She's been pretty comfortable...

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A plan. We have a plan

A plan. We have a plan

January 08th, 2019

They have increased angelina's feeds to 60 ml, which is the highest it's ever been! They are starting steroids in...

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