When emily met aurora
CW: This story contains references to NICU and details a life-threatening condition.
I had Aurora at 37 weeks due via emergency/planed c section because I got preeclampsia and she was an IUGR baby.
Aurora came into the world at 9:14am and at 3:40pm in the afternoon she was taken from me and placed into special care at Calvary Hospital at the time (now Canberra north hospital) after 10 hours in special care Aurora was transferred to Canberra Hospital NICU where she stayed for 1 month and then she was placed in special care for another 3 weeks she was 3 days off of being 8 weeks old when we finally got to take her home.
While Aurora was in hospital we found out a lot about her medical conditions (she has an extremely rare genetic condition called Micro xq28 deletion and is missing her FLNA gene which has now made her terminally ill she has 3 holes in her, gray matter on her brain which can cause her to have seizures/ epilepsy and pulmonary hypertension) she’s had surgery for feeding to stop her from vomiting and to place a peg in she’s on oxygen 24/7 and her life expectancy is unknown.
She was transferred to Westmead Children’s Hospital at 5 months old she’s now 9 months and we still have no idea when we’ll be going home.
What do you wish you knew before birth?
I wish I knew more about being a medical parent because it’s so hard and I don’t wish it on anyone.
If you could, would you do anything differently?
If I could take away my baby’s conditions I would in a heartbeat.
What did your partner do that really helped during labour/birth?
My partner was the most supportive person throughout our whole journey, he always made sure I had water, kept on top of pumping for Aurora and made sure I didn’t lose myself while she was in hospital.
What advice/honest truth would give a mama-to-be about birth?
Trust your gut, advocate for your baby and make sure that you’re heard but also be gentle with yourself you’re strong