When your baby just won't leave the NICU

Our daughter was born at 31 and 6, and all things considered, we were incredibly fortunate. She was a beautiful four and a half pound angel with no significant issues. NICU teams never like to give you timelines because so much can change in an instant, but projections had us coming home in 4-6 weeks. Though she had come out breathing on her own, she did need a little breathing support the first week, but CPAP only for a day and hi flow for a short spell. She was ready to eat by mouth sooner than expected and her team was so impressed with her progress. By 35 weeks corrected, our NICU team put her on event watch and said she'd be home any day now. But then as we waited for her to go the set amount of time without a brady or desat, I started to get discouraged. We'd get close, but never quite where we needed to be. Sometimes her events were mild, sometimes more significant, but all were enough to prevent her discharge. At 38 weeks corrected, our smaller NICU decided to transfer her to a larger facility in their network with more access to specialists and therapists. After seeing speech, ENT, conducting sleep studies, and meeting with lactation, we learned what we had already been told many times before. Our baby girl was perfectly healthy and she just needed time. Babies often resolve these issues by their due date. But then our due date came and went and now here we sit, 44 weeks corrected, having crept to the edge of yet another discharge only to have it snatched away at the last minute.

I'm reminded constantly of how lucky we are. Our little girl never needed any serious interventions. She was never critical. All indications are that she'll be a perfectly healthy child. But as I watch family after family leave the NICU, I can't help but feel bitter. Bitter as I watch babies who were born earlier than her, with more complications than her, nestled into their carseats as their families load them into cars. I feel angry and cheated that she's not at home. I feel like my heart can't take another close call. Like the very idea of getting within hours of a homecoming, only to unpack all that joy and expectation is too much to bear. 

And then I feel guilty. Guilty for not having more gratitude. For not having more forbearance, more patience. We could be here another two or three weeks. And while I know in the grand scheme of things, two weeks is nothing, especially for a healthy baby. Still, I see it stretch out in front of me and it feels insurmountable. It feels like more than I can take.

I've tried to find stories of other parents like me and I haven't. Parents muddling through an uneventful NICU journey that feels like death by a thousand paper cuts. Parents like me that try to temper their grief because they see the faces of their neighbors and hear how harrowing their journeys have been. I can't seem to find them. Which makes me feel more alone and more guilty. As I scroll through stories of babies going through horrendous surgeries and read the stories of grief from parents who lost their children, I wonder, what space does my story occupy? How does my heartache stack up against the heartache of others? I remind myself that it's not a game of comparison. But still, it feels lonely and isolating. If you're like me, I guess I'm just trying to say, hi, you're not alone. Because I wish someone would say that to me. 

2 Replies

  • I really relate to this. My baby was born post term and is in the NICU for meconium aspiration. She was initially critical, but made a lot of progress the first week. We are almost at the end of week two, and have been on the edge of discharge twice before she experienced just enough of a setback to keep her there. I am so angry with myself and my midwife for not doing an induction sooner. I feel like I have so few people to relate to because so many NICU babies are premature, not at term or post term. We are so fortunate that our baby is out of the worst of it, but it still feels like she is never coming home. Our parental leave is getting used without us getting to really be parents
    No one I am close to has had this experience. It is incredibly isolating.

    No words of wisdom, just solidarity.
  • Hi, you are not alone. I'm a new mom just had my daughter via emergency c section Monday. She's in NICU, 4 days old but my projected due date was February 10 th. I understand your frustrations and I can't say pray on it because I feel as if I don't have the right words for prayer myself. So what do you do to keep going hour by hour? I'm hoping that staying busy- house work, caring for my other child, talking it out with my partner? All these things you may have already tried. All I know is you are not alone, I'll add you to my prayers especially since I'm finding it hard to find the right words for myself. I'll pray for you.