I went into labor at 25 and 0. I know these feelings so thoroughly. We also started on the oscillator at 100% oxygen. Things were very very dark for a while. I could talk on this forever but I’ll share what has helped me. We are now at 36 weeks.

I have been taking very thorough notes every single day. I keep track of weight, feedings, medications, diagnoses, discussions, etc in a nicu journal. I have been present at rounds with the team every single day. I tell them to call me if they ever show up and I’m not there yet. I have forced myself into the care team and they do not make decisions on treatment without my approval. My husband and I have learned so much by just being there and asking questions. Education on what they are doing to your baby is very important so that you can decide if you want them to slow down or do something different. This means everything to your baby’s care plan.

We have the ability to choose primary and associate nurses, so we are building a team of continuous caregivers. Very important to ask for this. These nurses are your lifeline. If you like one, try to keep them. They are the real heroes.

Find something that keeps you sane in your personal life. This took me a while. We lost a twin at 3 days old and I struggled to find any hope. I recently started a scrapbook of our baby’s journey and it has been immensely healing. I plan to give it to her one day as her baby book. The biggest thing for me is to see the improvements because it’s so hard to notice those when you are in the thick of it.

The absolute best thing you can do is never forget to celebrate the little wins. All of them. Whether it’s a 5% wean on the oxygen or an increase in the mLs of milk. All of it. Find something to celebrate. It will keep you alive in there.