Friday, November 16, 2012

Prematurity Awareness Month- Our journey in medical words

I didn't often talk about the specifics of Virginia's medical conditions.  I tried to simply ask for prayers and healing without dwelling on the negative or exhausting myself or Heath by going into details that were either cumbersome to explain or painful to recount. It was also a way of protecting ourselves and trying to stay positive.  By focusing on the positive (and admittedly sometimes ignoring the negatives) we were able to keep going; it just worked for us.

As part of my efforts with the prematurity awareness month and my work with the march of dimes, I have promised myself to be a little more "real."  Most people don't understand the words below and thats not the point, it is simply a snapshot of our lives. I doubt many can understand what happens within a NICU unit unless you have have lived it and and the same goes for behind the door of a home with a preemie or medically fragile child.  My hope and the hope of many others is that with more awareness, more advocacy, and more funding less and less people have to know the preemie reality and more importantly the reality and indescribable grief of losing a child to prematurity.

This is what we encountered as part of Virginia's "typical" course.  Yes, this is all fairly typical for a 25 weeker.

NICU Diagnoses (that I can remember)
Very low birthweight (650 grams)
Respiratory Distress Syndrome
Patent Ductus Arteriosus (PDA)
Bronchopulmonary Dysplasia (BPD)
Chronic Lung Disease (CLD)
Pulmonary Hypertension
Pulmonary Fistula
Apnea of Prematurity
Anemia of Prematurity
Retinopathy of Prematurity (ROP)

Procedures in the NICU (Thankfully no Surgeries!):
Reintubation x 2
Ubilical Lines
PICC line
PICC line revision
more chest  xrays than I care to know about.
more blood tests than I care to ever think about.
at least 10 blood or platelet transfusions.
at least 15 ultrasounds (5 x head, 6 x cardio, 3 x kidneys, 1x diaphragm)
Swallow study
Endotrachial study
Endocrine study
IV's in every limb and so many heel sticks that her heels have a fine pattern of tiny scars.

Home life, while less complex and scary still does not fall into the typical category that most people think of.  Yes, it is our typical and we are making it work and are quite happy, but it is still full of plenty medical terminology and a life that is not laid out in any of the "what to expect" books.  

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