Love, Marianne

”Dear NICU Mama, You may not know it now, but one day you will be a walking letter of hope for the NICU mama who is celebrating a new life as she grieves the loss of how she imagined that this beautiful life would begin.

This is not what you envisioned. This is not the story you wanted to tell. I know that you are strong, even though you may still be in physical pain. I know that all you want to do is pick up your sweet baby, but the monitors, tubing, and constant alarms act as a barrier between you and your child… the child that you haven’t yet had the privilege to hold. I know that you feel helpless watching doctors and nurses care for your newborn. This is not how you imagined things would be. I see you. And I want you to know that you are doing everything right, mama.

You are reading your baby’s first book to her, trying your best to ignore the background noise and the lump in your throat that makes it hard to finish a sentence. Your shaking hands are helping with diaper changes, while your eyes remain focused on the monitors. You are walking out of the NICU alone, preparing for another night of heartache longing for the baby that should be home with you. You are walking into the NICU in the early hours of the morning, delivering milk just in case you hadn’t left enough behind the night before. You are taking care of your other children at home, trying your best to be present for each and every one’s needs.

Through times of diminished hope, you renew it by finding a way to celebrate the small victories each day. You remind yourself that if you don’t see the victories, they’ll feel just the same as the losses. And oh, sweet mama, how I wish you could see how many victories you and your baby have already had.

Being a NICU mama will be the hardest hat you will wear, but one day, it will also be the one that you are most proud of.”

Love,
Marianne

More of Marianna + Lenie’s NICU Journey:

“Helen ‘Lenie’  was born on October 5th, 2022 at 36 weeks via emergency c-section due to a 2/8 biophysical profile score performed at a routine ultrasound. She was placed on C-PAP immediately after birth and admitted to the NICU. She was diagnosed with PPHN (persistent pulmonary hypertension in a newborn), a VSD, and an ASD. On day 3 of life, she was intubated and placed on a ventilator. She was not improving and her blood pressure was dropping so she had to be life-lined to a level 4 NICU that night. Her pulmonary hypertension was treated with nitric oxide.  She was extubated on day 5. She spent 21 days in the NICU, weaning from oxygen support, learning how to eat, and gaining enough weight to finally be able to come home. It was a rollercoaster with many setbacks along the way, but we were able to take Lenie home 3 days before her due date. She is now a healthy and thriving 9 month old. Her name means “light” and that is exactly what she is, a shining light in all of our lives!”