The formal orientation for the nicu parent group was today. We learned more about what the group does, what our roles can be, and talked about how to be an effective parent advocate. I think I am going to focus on the dinners, bedside visits, and seeing the moms in antepartum.
When we were in the NICU with Little Miss Minion, we looked forward to the bimonthly dinners that were hosted by the group. It was a good chance to get to talk to other parents, meet graduate parents, see the light at the end of the tunnel, and get free food (hey, eating two or three meals a day in the hospital isn’t cheap). We learned a ton of helpful info at the dinners, such as picking primary nurses, how to blacklist a nurse, the little perks of the parent lounge (stocked fridge with juice, milk, jello, and other snacks), and we got a little break from worry.
Bedside visits are another facet to the group. On a purely utilitarian level, bedside visits are the best way to distribute materials like flyers, welcome bags, treats, etc to each child’s parents. On a support level, it’s a great way to interface with the parents and let them know that we are there for them. Their child has a team of people, but the parents often get overlooked, understandably so. We can serve as a backup for the parents, to be cheerleaders for them, to make sure they are handling things ok, to help get resources if they need extra help.
Antepartum visits are the last area that I want to focus on. I was on bedrest for three days in April (I was about 25 weeks) and then for two days right before she was born. Being able to talk to someone who had lived through it and could help navigate the process would have been invaluable. Plus, I was bored out of my mind in April, and talking to anyone would have been a nice break in the monotony. I think talking to the immediately post partum moms would be something I would also like to do. I was so out of it in the days after her birth, it would have been nice to have someone to talk me out of the shock.
I’m excited to see what this new opportunity holds.
Last night was the first part of orientation for the NICU parent support group. This is group of people who have had children in the NICU. They host dinners twice a month for current nicu families, visit parents on the antpartum wing, visit families in their nicu rooms, and generally try to make the nicu stay a little better. They do fundraisers, which I have helped with, that allow them to do things like bring a dad to the nicu from overseas before his baby passed away.
Yesterday was the informal informational meeting. There were seven of us, plus the leaders. We talked about what the group does and then there was the “tell your birth story” part. Normally, this is the part where I kind of back away. It’s hard when your story is so far from the ideal and the other stories are what you wanted yours to be. This time, instead of cringing when someone complained about how fat they got and how they were so upset that they had to wait five minutes to hold their baby, I found myself nodding along as someone mentioned the to do list they had written out in the morning and found themselves being admitted to labor and delivery at 34 weeks when their water broke early. We laughed at the crazy stuff we said or did while we were on magnesium. We grinned when we remembered how the nurses called our babies feisty or cranky or angry because it meant that they were fighting. There were many overlapping similarities, which is something I have not experienced when telling my story.
After that, we were told that any of us who wanted to could take a walk through the nicu. None of us had been back through the doors since we had been discharged. The atmosphere of camaraderie shifted as we neared the doors. Everyone seemed to pull back inside themselves. We were buzzed in and I stepped into the nicu for the first time since August 3, 2015. Everything was the same. We scrubbed up at the same sinks. We walked down the hall, each of us pausing for a moment as we passed the various wings that our babies began their lives in. I got a glimpse of our first room, at the end of one of the long wings. We walked through the parent lounge, then entered the second half of the nicu. I stood in front of the door to the room where we learned about hydrocephalus, the room where Little Miss Minion took her first bottle, the room we finally got to leave and bring her with us.
I hope that I am able to help someone on their NICU journey.