Love, Rose

“Dear NICU Mama, 

Life after NICU might feel isolating but know that it’s still your life’s story. You may look back at this chapter in your story with a mix of emotions. Like a story book, it can affect us differently each time we revisit it. 

Isolation may be skipping the birthday party because you’re too overwhelmed at the thought of germs. 

Isolation may be you being the only mother who has a NICU story in your circle of friends. 

Isolation may be trying to justify why your 6-month-old isn’t the size of a 6-month-old. 

Isolation is a schedule full of specialist appointments. 

Isolation are those intrusive thoughts. 

Motherhood to a NICU miracle may feel isolating in different ways. But it does become a chapter in your life’s story that you’ll eventually close. A chapter in your story that one day you’ll hopefully look back on and be proud of. And you are worthy of pride.

Love,
Rose

More of Rose + Jackson + Sebastian’s NICU Journeys:

“ I am the proud mother of two preemie, rainbow, NICU miracle boys. My first son, Jackson, was born at 31 weeks and 6 days. He weighed 4 lbs. 6 oz. and was in the NICU for 19 days. My second son, Sebastian, was born almost 5 years later at 30 weeks exactly weighing 2 lbs. 15 oz. and was in the NICU for 55 days. Both boys were born prematurely due to PPROM. Jackson was born almost exactly 12 hours after my water broke. Sebastian was born 18 days after my water broke. And even though both boys were close in gestation when they were born, their NICU journeys were completely different. 

Protocols within the hospital seemed to have progressed since Jackson was born 5 years ago. I was able to hold Jackson at 3 days old despite all the lines he had placed in him. He was never on CPap and progressed quickly from any breathing support. He mostly had to learn to eat, maintain body temperature, and fight through some jaundice. For his gestation, the medical staff was surprised by his ability to thrive and was able to come home after only 19 days. 

Sebastian’s NICU stay was more complicated. I wasn’t able to hold him until he was 8 days old because protocol wouldn’t allow it with his lines. He also had to stay inside the humidity within his bed and on CPap, despite the damage it was causing to his nose. His respiratory system always seemed stable and progressed well until it suddenly didn’t. At around 3 weeks old, his respiratory status became unstable and he stopped breathing. We later found out it was because he was very sick. He developed NEC and was anemic. He needed 2 blood transfusions and tons of antibiotics. The surgery team was called to be prepared to remove bowels. With close monitoring and tons of medical attention, Sebastian was able to fight off the infection and avoid surgery.

Sebastian survived no amniotic fluid for 18 days, a scary C-section due to his head being trapped in the horn of my uterus, prematurity, the CPap mask almost cutting through his septum, NEC, anemia, a heart murmur, 2 blood transfusions, hypoglycemia, torticollis, plagiocephaly, and jaundice. At 55 days old, he came home and completed our family. 

So many details to discuss with both boys and their pregnancies, birth, the NICU, and then having such a different post-NICU experience after they came home. I’m an open book and I love empowering others with my story and my honesty of how it feels to be that mother in the NICU (twice).