I have some exciting news! One of Little Miss Minion’s primary nurses has stayed in contact with us since we left the NICU. We have been invited to present our story to our state senators and representatives in March! We will be part of an Advocacy Day for the March of Dimes, which is an organization that does tons of research on prematurity and birth defects.
This visit will entail meetings with our local representatives and telling them about our experience in the NICU. I’m assuming the purpose is to help keep funding or grants or something. More details on that later. I’ll be working on a short explanation of my pregnancy complications and of LMM’s NICU stay and complications.
I don’t have a ton of info yet, but I’m so excited (and nervous) to be able to help this organization.
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.
We got the news today that Little Miss Minion will be moving up another level in classroooms! She will be in this new room until she turns two, and then it will be into the room where they start potty training! Not sure how that will work, since she will be two chronologically, but only 21 months adjusted. The new room will have mats instead of cribs for nap time, and they eat lunch at a little table with toddler sized chairs.
We also have our bi-annual early intervention meeting coming up on Monday. This will include our case manager, the physical therapist, and the speech therapist. We will be adding speech therapy sometime in February, since LMM seems to need a little extra help with that. She is babbling more, since we started implementing the suggestions from our speech assessment, but no words.
In non-LMM news, I have decided to volunteer in the NICU grad parent group at the hospital that LMM was born at. This is a group of parent volunteers who have had a baby in the NICU. They host monthly dinners, special events, and other things for the families in the NICU. They have two days of orientation and the first one is next Wednesday. I’m excited to be able to help out others who might be in the same boat we were in. There weren’t any micropreemie parents in the group, and I heard about their four and five pounders born at 34, 35 weeks and wished I knew someone with a preemie closer to LMM’s situation. The world of the NICU is so different from a full term, healthy birth, but within that, the world of a preemie vs micropreemie is vastly different.