#30DaysofHope - Carla

"Our little man was diagnosed with SpinaBifida at our 20 week ultrasound. We had fetal surgery at 24 weeks + 3 and he arrived at 27 weeks + 2 weighing 2 pound 8 and 40cms. He had a spontaneous perforation of his bowel on day 2 of life which resulted in a stoma. He was also diagnosed with hydrocephalus so at 34 weeks gestation he underwent brain surgery and had a ventriculo subgaleal conduit inserted into his head. He had his bowel reanastomosis at 35 weeks gestation. He spent 77 days in hospital. He is going for another brain surgery on his upcoming ‘due date’

I still can’t find the words to describe our NICU journey, I feel numb (he only came out of hospital last week), we had moments where I wasn’t sure what his/our future would look like. Every day walking into the NICU was like a lucky dip draw - you never knew what you were going to get.
I became so reliant on the monitors that when now I can still hear the beeping in the back of my mind.

I have read that ‘the NICU journey doesn’t end when you leave the hospital’ and I feel that so much, of his 77 days in hospital I can still remember each and every heartbreaking moment, every surgery, every eye exam, every blood test, every tube feed and also every precious moment of holding him, seeing his legs move and to watch his tiny toes curl over has been one of the best things to ever witness.

I longed for when his 6 hourly cares were due just so I could be hands on with him. Having to ask a nurse if I could touch or hold my baby became the normal.

He truly is our miracle. He has fought everyday to be here and we couldn’t be more proud of our little NICU graduate!"
-NICU Mom, Carla