Can you briefly tell us about your NICU experience?
My Gabriel was born at 27weeks and 2 days gestational age due to incompetent cervix. I had been hospitalized for almost a week trying to delay labor. It gave us time to get all the steroid shots for his lungs and magnesium for his brain to give him a fighting chance. I’ll never forget the relief I felt when he was born and gave us the tiniest cry. He was breathing! The NICU team was there ready to take care of him. They put him in a bag to help him retain moisture and heat as they checked his vitals and supported his breathing. I was so grateful to hold him for about 3 seconds before they wheeled him over to the NICU. It was an 82-day long roller coaster ride. The NICU is an overwhelming place of miraculous science and courageous strength. Every tiny thing is a big thing in the NICU. And so overwhelming for parents.
What was the hardest part about your NICU stay?
I think the hardest part for me was to walk in there every day holding on to hope that everything will be ok, not knowing what OK would actually look like. I was completing my final semester of occupational therapy school and my husband coped by focusing on work while I spent my days with Gabriel at the hospital and completing my coursework. I felt like I had no time or energy to break down, just had to stay strong and focus on the next step. Pumping breast milk became such an anchor for me. I felt like it was the only motherly thing I could give him. It gave me a routine and every milliliter pumped gave me a much-needed mama ego boost. After 3 weeks I was finally able to hold him. I felt as emotionally vulnerable as he was physically. We celebrated every little NICU milestone one ounce at a time.
How would you describe the period immediately after your son was discharged from the NICU?
I finished my OT coursework the day before he was discharged! He graduated a week before his due date and came home with oxygen which made it feel like he was not ready. It was a difficult transition to go from observing his complex care in the NICU to being completely responsible for all of it. And getting him to all his specialist appointments every week was exhausting. My breast milk supply dropped during that time which triggered postpartum anxiety and depression. Breastfeeding (through pumping) had become such a source for my mama-worth that the thought of not being able to give him enough breast milk made me feel like my body was just failing him again. All my repressed emotions from having to stay strong while he was in the NICU, bubbled up to the surface. I was also struggling with NICU PTSD from all the spells and alarms. I reached out to my therapist and rented the medela symphony pump. I managed to increase my supply but also accepted supplementing with formula is OK. Fed is best!
Since he has bronchopulmonary dysplasia (BPD) or chronic lung disease, we’ve been living in our “preemie bubble” trying to give his lungs extra time to heal and grow. We haven’t had any visitors, not even family. He has not been anywhere other than to his doctors’ appointments and the park. He’s now 1 year old/ 9mo adjusted age and I’m so grateful that we’ve been able to live like this to keep him healthy longer, but the isolation has been difficult. The idea of just taking him to the grocery store excites me, not to mention introducing him to his family in person soon!
What advice would you give to parents who currently have a child in the NICU?
It is hard to give advice to other NICU parents since everyone’s situation is so unique. But a few important things I’d recommend are: Give yourself and your partner extra compassion, reach out to a therapist, join a preemie support group (I wish I did this much earlier!), and try to tell people specifically what you need. If you don’t know – that’s ok, too. People want to help but often don’t know how and being assertive with your needs can give you a sense of control while everything else feels out of your control. This also applies to advocating for your baby’s care. However much or little time you can spend at the NICU is OK. Talk to the nurses and doctors and trust your gut to speak up. And just know this is so hard – you’re not alone.
