Dawie was born FULL TERM at 40 weeks and 1 day Via C – Section. But little did they know that their baby would spend 104 days in the NICU…
1. Genevieve tell us about the day you found out that you were pregnant?
We have been trying to get pregnant for a few years and I had a miscarriage during hard lockdown, so we decided just to let go and let God. We knew His timing is always perfect.
I did not have any signs of being pregnant, but there was just this little (Godly) voice in my mind one day, telling me to take a pregnany test (which I dreaded as I had so many negatives before). I took a test and within seconds there was not one, but two lines! I felt so many different emotions, it’s actually so hard to pinpoint a specific emotion. After working through all our emotions and going for our first scan, seeing and hearing that little heartbeat, things were real and we were over the moon about our little rainbow blessing!
2. How was your pregnancy journey?
I had an amazing pregnancy with very little pregnancy symptoms. I loved every minute of being pregnant, carrying and feeling this little life yet to be born inside of me. I felt so privileged to be our baby boy’s chosen mommy.
3. Tell us about the day Dawie was born, how much did he weigh ? Did you know he would end up spending time in the NICU ?
The day Dawie was born is still actually such a blur as so much was happening and we had to deal with so many different emotions, people and things.
Dawie was born on 40weeks + 1 day by a c-section. He weighed 3,2 kg and he was 51 cm tall.
I was in the recovery room longer than expected as I started bleeding again and when they eventually wheeled me back to the ward, we received the news that Dawie must go to NICU as soon as possible where he was immediately put on oxygen.
We had no idea (as nothing abnormal was ever picked up on any of my scans), that instead of leaving the hospital 3 days later as a new family of three, we would spend 104 days driving back and forth visiting our little boy in NICU.
4.Tell us about your emotions you had when your FULL TERM newborn was whisked away from you to go to the NICU ?
Oh goodness, I felt all the different emotions possible, from confused, to sad, to angry to scared…
5. Tell us a bit about Dawie’s NICU journey.
Dawie was born on the 17th of November 2021 with Treacher Collins Syndrome (Treacher Collins Syndrome is a rare syndrome that occurs 1 in 50,000 babies. It is a craniofacial deformity, meaning that the bones and tissues of the face do not develop as they should. Although TCS causes a difference in physical features, these features can cause difficulties to function and development as well. A person with TCS can have difficulties in hearing, speech, sight, breathing and feeding due to the lack of development in tissues and bones within the face.)
His smaller jaw, obstructive airway and cleft palate led to breathing and feeding difficulties. His eye sight is perfect and he only has conductive hearing loss, which means he can hear, even though his outer ears are not fully formed. He wears BAHA’s (Bone-anchored hearing aids) to stimulate his cochlea.
After 104 days in the NICU; being resuscitated three times, a handfull of procedures, a few interventions, an amazing team of nurses, doctors and specialists and a lot of prayers, Dawie was discharged end of February 2022.
He has a Tracheostomy to secure his airway and a PEG feeding tube for his milk feeds as he couldn’t drink from me or a bottle, which we believe will soon be able to be removed once it is safe for him. He also recently had his cleft repair.
We have been home nearly double the days spent in NICU and Dawie is healthy, happy and thriving (beyond human expectation)!
This is maybe not the way we pictured our journey as parents, but this is our godgiven journey and we are excited to see what God has in store for our little miracle boy.
6. What advice would you give another mommy if you could regarding, NICU and being “medical parents” ?
Take it one day at a time, voice your feelings and emotions, cherish each moment with your baby and your partner, hold on to each other and family and friends who support you, build a good solid relationship with your medical team and/or personnel, don’t be afraid to ask questions and/or for help, be willing to learn a lot of new things, find a community and most important, NEVER underestimate the power of prayer and grace.