Love, Rachelle
“Dear NICU Mama, The journey you are on with your medically complex miracle may feel overwhelming, but you are adapting. Maybe you don’t see it yet. Maybe you don’t feel it yet. Or maybe, you do. Either way, you ARE adjusting and will become accustomed to it all.
Becoming accustomed doesn’t mean everything is okay, normal or that you automatically handle it all with ease. Being forced to make these kinds of adjustments may hurt just as much as the initial shock of your situation. You may ask, “Why must I need to adjust? Why us?”
As you adapt to the newfound levels of emotion, fear and unknowns, medical jargon, machines, love, responsibility and pace of life, it’s okay if it doesn’t automatically feel better. You don’t have to act stronger just because you’ve adjusted. You are still allowed to lean on others for support. There’s no time limit to feelings of overwhelm or messiness.
When you find yourself drawing comparisons, please remember that your child’s illness and survival does not need to hold up to the severity of others’ to be or feel valid. Even if others’ situations seem worse, you still need to adjust to yours. Your trauma is not less worthy of your self-care and attention.
You are adjusting, mama. You are strong. But please do not be pressured to shoulder more because of that. Keep leaning on your team and keep seeking help. You don’t have to be Superwoman. You are already enough just as you are.”
Love,
Rachelle
More of Rachelle + her son’s NICU journey:
At 35 weeks pregnant, we were in a car accident. Following the accident, I could not feel my son moving. I panicked, trying to get to the hospital as soon as I could. Between terrible weather backing up ambulances and my insurance holding me at the scene, it was an hour and a half until I received medical attention. I assumed my son had passed. My boyfriend, Kyle, was an hour away in bad weather. He couldn’t get to me. I felt alone.
When we got to the hospital finally, we were told everything was fine. But as labor began, intensified, and refused any kind of intervention, we learned about my placental abruption (significant, including lacerations). We also learned of my son’s fetomaternal hemorrhage. We were immediately prepped in the OR for c-section. My son was born with about 40% of his blood volume left and rushed to the NICU. Kyle arrived right as they finished my last few stitches. I had no idea what was going on with my son.
He seemed to be doing well in the critical care nursery. He was removed from CPAP within hours, had stable blood sugars, etc. Day 2, nurses noticed consistently elevated sodium levels.
Diabetes Insipidus. Polyuria. Kidney damage from blood loss. It sounded so ominous. I made the mistake of googling those things and spiraled.
Our NICU stay was 18 days. I’m my time sharing that publicly, I was told many times, “it’s not that bad.” “It’s easy to live with.” “It won’t decrease quality of life much.” “You’re lucky to be okay,” and on and on. We left the hospital with genetics and nephrology appointments. Today we sit with resolve DI but consistent hydronephrosis. We are healthy and thriving. We are thankful. We are not diminished. We are honoring our trauma and healing intentionally and asking for help. Most of all, we are loving every minute (even the minutes we don’t ;) ).
