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Be.
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Be.

19 May 2021. Open Heart Surgery 2.0 Be strong little one, our God has given you all the armor you need to fight. Be brave little one, you are given a story that will inspire others to do the same. Be faithful little one, for you faith will be what carries you through the scary […]

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Feeding Tube Freakout
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Feeding Tube Freakout

Today was the first time Stephan and I cried together. I have a rule you see, we are both allowed to have our moments to feel defeated, to cry, to scream at the top of our lungs. But never at the same time, never together. When he cries I have to be strong for him. […]

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Blood Tests
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Blood Tests

Being Stephan’s mom has been an absolute blessing and I feel incredibly lucky to have him. But it often comes with challenges that no other friend or family member of mine has had to endure, making it really hard to find someone that knows what I’m going through. Today was tough. When we finally fell […]

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Homecoming
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Homecoming

It was on the morning of the 17th of December 2020 when we received the call. Stephan is ready to be discharged. It felt unreal. Our son is 8 weeks old, and finally, he would come home for the first time. We rushed over to the CTICU and experienced the most overwhelming moment of our […]

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But God
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But God

Stephan’s journey had reached a lot of people by the time he was transferred to Sunninghill Hospital for his first surgery. I can’t even count the amount of messages, calls and prayers that went out for our boy. People we had never met before where sending voice notes praying for him. Then we were sent […]

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Smooth Operator.
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Smooth Operator.

Babies born with Down syndrome often are also born with heart defects. Stephan was born with a Large Ventricular Septal defect. On the 25th of October 2020, one day after he turned 1 month old, Stephan went in for his first operation. Cardiac surgery in the form of Pulmonary Artery Banding. In simple terms, the […]

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The Final Countdown
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The Final Countdown

After finding out that Stephan is going to need surgery to temporarily help his heart heal as much as it can, we had to start planning the “Groot trek” (big move). The Doctors who are able to perform Stephan’s surgery are based at a different hospital which means that he needs to be transferred via […]

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NICU Visits
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NICU Visits

Because of the COVID pandemic dad and I were only allowed to visit for 1 hour a day, between 4 and 5pm. We lived for this hour, everything we did throughout the day was nothing compared to the time we would get to spend with Stephan later, even if it was so short. We tried […]

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Pump Up The Jam
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Pump Up The Jam

From the first day Stephan was born I started expressing breastmilk for him. Being born at 35 weeks, his cheek muscles and sucking reflex was not fully developed at birth, so it would take a while for him to be able to feed on his own. Pair that with the low muscle tone that comes […]

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Trisomy Twenty What?
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Trisomy Twenty What?

On the 29th of October we received the confirmed diagnosis of Down syndrome for Stephan. Naturally we were devastated at first. Neither of us had ever known anyone with Down syndrome, never known any parents with Children that have Down syndrome. We were already feeling quite isolated in our parenting journey as we don’t have […]

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