Little Miss Minion and the Return to the NICU

As you probably are aware of by now, I volunteer in the NICU as a member of the parent support group. There are several facets of what we do, such as fundraising for activities, visiting moms on hospital bedrest, and hosting events for parents. The part that I usually do is doing a unit visit. I walk through the unit and drop off welcome bags for newly admitted families and talk to parents who are in the unit about how they are coping. This week, I volunteered to cover the weekly dinner we host for the parents. We use a conference room just outside the unit and it’s a nice place to relax, have a good meal, and talk to other parents who are in the same boat. I don’t usually get to do these because of my class schedule, but someone was sick and no one else could cover it. I remember how much Mr Minion and I looked forward to these dinners and I couldn’t let it get cancelled.

The only catch was that I would have to bring Little Miss Minion with me. Mr Minion was working late. I packed up the iPad and some coloring books to keep her busy and we went to the NICU after I picked her up from daycare. Little Miss Minion was very well behaved and so excited to be “helping the babies” at the NICU.

Once we had all gotten plates and were settled, I introduced myself and gave the short story of our NICU journey. It’s a lot different telling a story that involves pediatric brain surgery when the kid in question is sitting next you playing on an iPad. People hear the words “brain surgery” and “brain damage” and they picture a very sick kid. When I introduced Little Miss Minion as the kid in my story, the parents were shocked. Some of them are going through rough journeys of their own and I hope seeing LMM gave them a little hope.

LMM stayed pretty quiet through the dinner and the talking. We all shared our stories and struggles, as well as some of the funny things that happen. I talked about the time I fell sleep while pumping-I put on an episode of Good Eats to keep myself awake during my 2AM pumping session and made it about five minutes in before falling asleep for about an hour–that story always breaks the tension and helps people relax.

I sometimes get that weird feeling that I’m *meant* to do something and I got that feeling before I accepted covering the dinner. As people started to open up and share, one of the dads told his story. His daughter was born at the same weight as LMM and has been there for over 200 days. Much like us, they had a severe infection that resulted in dramatic damage–LMM ended up with meningitis, sepsis, and hydrocephalus. His daughter ended up with a mystery lung ailment that damaged her lungs.

I ended up talking to this dad for about forty minutes after everyone else left. His daughter weighed the same amount at birth as LMM and was a week earlier. He was very affected by seeing another Preemie who survived some pretty dire stuff and couldn’t believe that she’s had five brain surgeries. I think he needed that spark of hope, of seeing the light in the tunnel for his own daughter. He showed me pictures of his daughter and I showed him similar pictures of LMM.

I think I’ll have to start volunteering to cover these dinners more often. It was nice to see the parents in a less tense environment (the bedside is sometimes an awkward place to try to talk about the stress of the NICU). I think LMM had fun too, even though she didn’t get to see the babies.

2 Year Shuntiversary

Tomorrow marks two years since Little Miss Minion’s last surgery. This is the longest that we have gone between surgeries (*knock on wood*), and she has changed so much since the last one. Before her last surgery, she still wasn’t really talking and was having some minor gross motor issues. The shunt malfunction that caused her last surgery was a slow breakdown, and I suspect that it was putting pressure on the part of her brain that controls speech. She is a chatterbox now, and enjoys singing to herself and talking to her toys and anyone who will listen.

Another interesting facet of this milestone is that she is old enough now that she will remember any future surgeries that she needs to have. She will notice the shaved patch of hair, and will remember the feeling of having stitches. I hope that she will remember the specific feelings of shunt failure, so that we can compare any headaches to the Shunt Headache. I have been told that Shunt Headaches are subtly different from regular headaches, but how can I explain this to a little kid? How do you explain to the kid that you have to go to the hospital for a lot of tests because they have a headache? What about when you (the non-shunted person) say that you have a headache? If the hydro kid understands the severity of THEIR headaches, how do you explain that YOURS are just inconvenient and don’t require a hospital visit?

While this Shuntiversary reminds me of the last five surgeries, its also a great statistical milestone. Half of all pediatric shunts fail within two years. After that, the failure rate is much lower. This is a great thing for Little Miss Minion and I hope we make it a long time without another brain surgery.