Love, Kristen

“Dear NICU Mama, Your motherhood story is a reminder that joy is ahead.

This NICU journey may feel impossible, but remember the strength you have in your sisterhood. This NICU journey may feel lonely, but your sisterhood is with you always – whether in person or in spirit.

You are the best mother for your baby, and no matter your story leading up to your baby’s birth and NICU stay, please trust that you did everything you could to grow and nurture your warrior before they joined you earthside.

You are not alone, sweet NICU mama.

Grief and joy can co-exist. And though you may feel grief now, and may continue to feel it after your NICU journey ends, there is still so much JOY ahead.”

Love,
Kristen

More of Kristen + Cecilia’s NICU Journey:

“Cecilia Anne was born at 29 weeks and 1 day gestation due to cervical insufficiency. At 1 week of life, she was diagnosed with a Grade III Bilateral Brain Bleed. At 2 weeks of life, she was diagnosed with Post-Hemorrhagic Hydrocephalus. At 3 weeks of life, she endured her first brain surgery to place a ventricular reservoir as a temporary solution for her hydrocephalus. This allowed her NICU team to manually draw CSF fluid from her brain each day while she continued to grow big enough to handle the placement of a Ventriculo-peritoneal (VP) Shunt. Cecilia endured daily CSF taps for a full month before she was big enough to undergo her first VP Shunt placement surgery at 37 week corrected. We spent the last month of Cecilia’s NICU stay learning how to eat, which felt impossible at times, but at 41 weeks corrected, or sweet girl graduated from the NICU and came home.

Cecilia’s story does not end there, as after being discharged from the NICU for two and a half weeks, I rushed her to the ER one Wednesday afternoon after noticing she wasn’t acting like herself. In a matter of hours, Cecilia went from being her normal, happy self to septic. She was diagnosed with e. Coli bacteremia, septicemia, meningitis, and ventriculitis. She was rushed into emergency surgery to remove her infected shunt, and within 24 hours was in septic shock. Our girl was on life support for 10 days, enduring seizures and a widespread infection. Slowly but surely, our baby girl fought so hard and began to heal. After 21 days of antibiotics, and 32 days total in the NICU, Cecilia came home again for the second time. This time, she came home with neurological deficits from the widespread infection, and for the next four months endured 4 more brain surgeries, putting her total at 9 brain surgeries in her 9 months of life.

However, our girl has worked so hard in therapy to regain what she has lost. She is now almost 13 months actual, eating purées, working on rolling and sitting unsupported, and is the literal joy of our lives. She is truly a miracle, and our greatest littlest love. It’s been a journey, but she is worth every tear and every difficult hospital stay.”