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Parent Support for ROP and IVH

Meet Rachel, Preemie Parent Mentor

My preemie(s) was born at: 30 weeks & 5 days
Days spent in the NICU: 54 Days
Current age of preemie(s): 10 months
Parent of Multiples: No
Our NICU Journey included: Placenta Abruption, DIC (Disseminated intravascular coagulation), Emergency C Section, ROP (stage 1 zone 2) and Brain Bleed (stage 3).

At around 6 months, I was diagnosed with gestational hypertension. After a couple of weeks of no salt and wearing leg compression socks, my blood pressure was still high so they put me on medication. After only 2 weeks of being on the medication, I woke up with a horrible stomach ache and I thought it was from something I ate. I spent most of the day at work and finally decided to go home. On my way home, I changed route and went to my doctor. My doctor told me my blood pressure was high and to go to the hospital. I went to the hospital and was told my baby and I were both in distress. They had me sign a sheet of paper and performed emergency surgery. I woke up and was told I had a placenta abruption and DIC(Disseminated intravascular coagulation. I had to receive multiple blood transfusions and magnesium.

I remember feeling separated from my son, even though he was next to me. I remember being overwhelmed and not always understanding what was going on but having confidence in my sons doctors and nurses. I remember my days being very routine and long. I remember being in awe of the care my son did receive and so thankful for his doctors and their warmth.

Before having my son, I never knew any mother who went through a premature and traumatic birth. I felt alone and scared. I navigated my son’s NICU stay mainly by myself and I wish I had more support and guidance. I want to offer parents going through something similar comfort, support and advice.

What are 3 things that every NICU parent/grandparent should know?

This is your baby’s journey.
You can’t speed up their progress,
You have to be patient. It will all come together!

Retinopathy of Prematurity (ROP)

Retinopathy of Prematurity is common in premature babies, who often receive treatment with oxygen and may have either an excess of oxygen or too little oxygen in their blood. This results in the abnormal growth of blood vessels in the retina, which can lead to vision problems or blindness. Some cases of ROP correct themselves while others require surgery, and the variability of ROP can be frightening and frustrating for parents.