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.

School as a “Returning Learner”

As I have mentioned before, I am returning to school in pursuit of a career as a NICU nurse. Currently, I am taking Anatomy & Physiology I, which consists of a lab and a lecture. Having already been to college once (for a Bachelor’s degree in English Education), and being slightly older than the average first-time college student, I am classified as a “returning learner” for student purposes. Among other things, my background means that I do not qualify for FAFSA (free student financial aid), but it does mean that I have already experienced college, which I am beginning to see is a huge advantage.

This semester has been an interesting ride so far. From new online programs for coursework that didn’t work, to only using an online version of the book (until I bought the paper version last weekend), to my professors not knowing how to use the online coursework site, it was a rough start. I am already a very Type A person, and I prefer my schedule to be organized and itemized as much as possible. Knowing that this is the first “make or break” class of any medical program, I began preparing before the semester even began. I took a one week prep course that covered what you should know going into Anatomy & Physiology. I took notes and printed them out as a reference, sticking them in the back of that binder I use for class. When the textbook listing came out for this class, it included some study aids. After determining that I would actually use them, I purchased them–a huge set of flashcards and a coloring book (more on this in another post). I have heard from several people, some of whom are now nurses, that Anatomy & Physiology is a divergence point in the coursework of becoming a nurse. I was taking no chances.

The first lecture class was similar to most of the others I have taken. The professor lectures off a PowerPoint and posts the slides for the students to print and take notes from. Neither of the two students on either side of me had printed them. Instead, they were frantically scribbling down every single word on each slide, unable to focus on what the lecture was covering because they were trying to transcribe slides that they already had access to. Every so often, they would glance at me with a “what are you DOING?” look in their eyes. I was taking occasional notes to clarify or expand on a topic, perhaps highlighting something. I actually sat in a different seat at the next class because they were making me feel anxious with their frantic scribbling.

The most recent class was similarly notable. The professor couldn’t go two slides without someone asking if this would be on the test, or if we had to know this for the quiz. I gave up trying to hide my irritation after about the fourth time someone asked the same question. During the break, a few students were complaining to the professor that this was too much to learn, that they couldn’t memorize the book, that they didn’t know where to start, that they needed a study guide. When she finally lost patience, her reply was that this is an upper-level class for people who want to go into the medical field. We need to know ALL OF IT.

My lab class has different students, but similar attitudes. When our professor said that spelling would count on the lab tests, there was an audible reaction from most of the class. Her reply was that, as nurses, spelling something wrong can have huge repercussions, even cause an error that costs someone their life.

 

I think my favorite quote related to the mindset of going to nursing school is that we should be trying to become the nurses we would want to have if we were patients. I can tell that some of the students have this mindset, and are determined to learn as much as they can. These tend to be the older students, maybe the “returning learners.” The rest seem to want the answers for the tests handed to them. If it isn’t going to be on the test, they don’t want to hear about it, don’t want to learn about it. I figure that this class is the basis of every other class I’m going to have in nursing school, and I want to be prepared.

 

 

 

 

 

 

 

 

 

 

 

 

 

NICU Awareness Month

As I mentioned in my last post, September is Hydrocephalus Awareness Month, but it is also NICU Awareness Month! Here is the short story of how Little Miss Minion ended up in the NICU.

Little Miss Minion was born at 28 weeks because I had developed something called preeclampsia. Basically, this is high blood pressure that has negative effects on blood vessels that carry nutrients to the baby and to the mother’s organs, particularly the kidneys. When my kidneys began releasing large amounts of protein (measured by weekly urinalysis), my doctor decided I needed to be on bedrest. Two days into bedrest, I had a follow-up appointment with more urinalysis and bloodwork to see how things were progressing. When everything was analyzed, they told me to go the hospital for confirmation and to expect to go back home for bedrest.

While doing more bloodwork in the hospital, it was determined that I had also developed something called HELLP Syndrome, a complication of preeclampsia. In addition to (or because of) the high blood pressure and kidney damage, my platelet count was lowering, my red blood cells were being broken down, and my liver was being damaged. All of these things together made for a very bad combination. Toxins were building up as my kidneys and liver were damaged and unable to filter them out. My red blood cells were damaged, and my platelets were being destroyed. Platelets are a very important component of your blood. When you have a cut or any bleeding, they flock to the area and cause a clot, which stops the bleeding. Low platelets means that the chances of hemorrhage increase. Not a good thing when the only way to stop your symptoms is an emergency C section.

The scariest part of this whole thing is that I FELT PHYSICALLY FINE. I had headaches, but I always got headaches. My feet were puffy, but I was pregnant and that is apparently common. I am still so incredibly thankful that my OB listened to me the first time around (we had a mini version of this in April, when I was 25 weeks) when I said something felt off, but I couldn’t put my finger on it. My blood pressure was higher than normal for me, but still within normal limits. My bloodwork came back off, but not off enough to conclusively prove anything. My feet were puffy, but only after I walked around at work.

I had my first visit to the NICU a few hours after LMM was born. I had been too sick from the magnesium (used to keep my skyrocketing blood pressure from causing a seizure) to go down and see it. I can’t remember at the moment if Mr Minion was able to go down and see it beforehand. I know they sent a couple of the neonatologists up to talk to us at some point before she was born. We had been aiming for 34 weeks, then 32 weeks, and then LMM stopped moving on the monitors I was strapped to 24 hours a day. An hour after she failed the non-stress test, she was here.

My first memories of the NICU are hazy because of the magnesium. I don’t remember getting to her room, but I remember being in the room and looking at the incubator and thinking, that is not a baby. That can’t be a baby. So many wires and tubes and nurses…so tiny. There is a picture of me in the hospital bed in her room looking absolutely trashed and I can see the state of shock I’m in.

As I began to physically heal, the NICU became less of the shadowy and terrifying place I had seen that first night, and became like home. We had a routine after I went back to work 2 weeks later: we would arrive at the NICU at 6am. I would pump and we would get the overnight report from the nurse. I would leave for work at 6:30 and Mr Minion would stay until around 8, maybe getting to help with her diaper change or even holding her. I would get off work at noon (my work allowed me to change my hours so I didn’t burn all my time off before she came home) and drive to the hospital, change my clothes, pump, and hopefully get to hold her for an hour or two. Then I would pump again and try to take a nap. Mr Minion would arrive and we would have dinner in the cafeteria, then go back to the room for her evening cares (diaper change, temp, heel stick for sugars). One of us would hold her for another hour, I would pump again, and then we would head out after the night shift switch.

Repeat for 84 days.

When she finally got out, I was sure I would never go back. Then, I wanted to go back to help with a fundraiser for the parent group. Then, I joined the parent group as a full volunteer and went back into the Unit itself to talk with parents about their NICU journeys. Now, I’m going back to school to earn a nursing degree so I can come back to the NICU as a nurse.

It’s funny how thing work out sometimes.

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

For those who don’t know, my daughter Little Miss Minion was born at 28 weeks. While in the NICU, she developed an infection that led to meningitis and sepsis. As a result of the meningitis, she developed a condition called hydrocephalus.

Several weeks after she was out of the woods from her infection and complications, I remember getting a message from the charge nurse one day when I was at work that said they had done a scan (they did brain scans periodically to make sure she didn’t have a brain bleed, another complication of premature birth) and the scan had revealed enlarged ventricles. Of course, I immediately googled enlarged ventricles and found articles about kids dying in Africa with heads the size of watermelons. Needless to say, I hightailed it to the NICU to find out what was going on with my baby. They told us that a specialist was coming to talk to us about our options. I was convinced that there was a strong chance that LMM would end up like those kids in Africa.

The specialist they sent turned out to be an incredibly talented neurosurgeon from a nearby Children’s Hospital. There aren’t many pediatric neurosurgeons in the country, and there were none in the medical system we used. That’s a story for a different day.

The neurosurgeon explained that LMM had something called hydrocephalus. He told us that, because of the illnesses she had overcome, her brain had become damaged and was no longer draining itself the way it should. He told us about cerebrospinal fluid and how your brain creates this liquid inside areas called ventricles. How something happened inside LMM’s brain and the liquid wasn’t draining. Instead of flowing around her brain and being reabsorbed, it was pooling and building up, putting pressure on her brain.

As if this wasn’t bad enough, he went on to explain that the only way to fix this problem was to surgically implant a device called a shunt. There would be a small tube placed inside one of her ventricles that would drain the extra fluid into a pocket near her stomach, where it would be reabsorbed.

Her first shunt surgery took place when she was about eight weeks old and weighed around 4 pounds. Since then, she’s had four more surgeries.

The only experience I had with hydrocephalus was watching a Disney Channel movie starring Frankie Muniz called Miracle in Lane Two. It’s about a kid who wants to race these Build It Yourself race cars. The kid has spina bifida, and uses a wheelchair to get around. He also has hydrocephalus, and has a shunt malfunction during the plot of the movie. Having this as my baseline knowledge, combined with the terms “brain damage” and “brain surgery” plus the fact that no one could tell us what this diagnosis meant for LMM, we were incredibly worried for her.

Luckily, the brain damage was minimal (as seen on multiple MRIs) and it appears that her brain simply went around those areas to make new connections. We won’t know for sure, so we just have to wait and see if she starts having trouble later.

If you’ve stumbled on this blog by searching hydrocephalus, I want to tell you that you aren’t alone. Also, don’t google it. 🙂

First Week of Class

It’s been a week since class began and I had to buy a new planner to keep track of all my classwork and homework. Anatomy and Physiology definitely seems to be a dividing line in terms of coursework. This class has a once a week lecture, where we’re covering about two chapters, and a once a week lab class, where we handle application of those two chapters. I think there a lot of new college students in my lecture class because none of them seems to understand how to take notes. 90% of the class was frantically copying down notes–even though the notes are available on the school website and we were looking right at them.

So far, we’ve covered the body plan, general explanations of what A&P is, and a review of chemistry. This week, we cover the cell, and this weekend is a holiday because of Labor Day so I don’t have my Saturday lab. Yay! I’ll spend the time studying instead. 🙂

The Next Goalpost of Milestones

Since Little Miss Minion starts pre-k in a few weeks, I figured I would go through the CDC milestones for 5 year olds and see how she’s doing. I posted a while back for the 4 year old milestones and she’s met all but one (catching a ball), so I wanted to see her progress toward meeting the next set. The following list is from the CDC’s website with my own notes after each entry.

Social and Emotional

  1. Wants to please friends-yes. She’s fairly good at sharing with others and plays with other kids at school.
  2. Wants to be like friends-yes. She likes to note similarities between herself and others, like hair color, shirt color, likes and dislikes.
  3. More likely to agree with rules-yes. Mostly.
  4. Likes to sing, dance, and act-yes. She constantly sings in the car and always gets up to dance whenever there is music. She is starting to frequently make up little storylines when playing with Mr Minion or myself, like “I’m eating soup (out of my pretend ice cream cup) because its cold outside. Brrr.”
  5. Is aware of gender-yes. She mixes them up sometimes (mostly for indeterminate things like a stuffed animal or cartoon character).
  6. Can tell what is real and what is make-believe-mostly.
  7. Shows more independence, such as visiting a next door neighbor by themselves-have not tried this, as I do not trust her to be outside near the road we live on by herself. She will happily go and talk to neighbors if they are outside.
  8. Is sometimes demanding and sometimes very cooperative-100% yes.

Language and Communication

  1. Speaks very clearly-I don’t generally have trouble understanding her, but I think other people sometimes do.
  2. Tells a simple story with full sentences-yes, I’ve been happy to see that she almost always speaks in full sentences (it’s the English teacher in me).
  3. Uses future tense-yes. She likes to explain what we are about to do. “We are going to have dinner and after that, we can watch a movie.”
  4. Says name and address-she knows her first and last name, but only remembers her middle name about half the time. We don’t really use it, so I am not surprised. We never say our address either, so I guess we need to work on this one too.

Cognitive

  1. Counts 10 or more things-yes.
  2. Can draw a person with at least six body parts-not frequently. She usually gets a head, eyes, mouth, and body, but sometimes adds feet, hands, shoes, fingers, etc.
  3. Can print some letters or numbers-she can reliably trace all her letters, but can legibly write several on her own. She can recognize all the numbers and letters. This is one that will we will be working with her on this year.
  4. Copies a triangle and other geometric shapes-yes-when she feels like it. This will also be something that we work on this year.
  5. Knows about things used every day, like money and food-yes. She got really excited the other day because I had some change in the cupholder of my car. “You have MONEY, Mama!!”

Movement and Physical Development

  1. Stands on one foot for 10 seconds or longer-no
  2. Hops, may be able to skip-can definitely hop. I don’t think I have ever seen her skip
  3. Can do a somersault-she is close—I’m worried about the rolling part putting pressure on her shunt and causing pain.
  4. Uses a fork and spoon and sometimes a table knife-yes, she has started requesting a knife to cut her own food.
  5. Can use the toilet on her own-yes.
  6. Swings and climbs-yes!

All in all, I think we are in pretty good shape to start pre-k!