Tag Archive | shunt

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.

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. 🙂

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!

The Sims: Kid Edition

If you knew me in high school, you might know that playing The Sims used to be what I did in my free time. In case you are unfamiliar with The Sims, it is a computer game where the user gets to create a character and then build them a house, get a job, get married…essentially control their lives. I built starter homes (and didn’t cheat), built massive mansions (thanks, rosebud and motherlode), threw parties, and went on vacation. Once The Sims 2 came out, I created virtual versions of my favorite book characters and of course, of myself. My sister made a picture on Microsoft Paint for me in which my Sims came out of the computer and killed me, spilling my ever-present bowl of popcorn onto the floor as they continued their rampage into the real world.

Since I am a Grown Up now, and have to juggle things like my full time job, my family, going to school, and volunteering, I don’t get to play as much as I used to. Which was all the time. However, I learned several things from spending most of my teenage years playing The Sims that I think are beneficial in real life.

  1. Sim-Meter. This is the little box in the corner that tells you how your Sim is doing. It shows if they are tired, hungry, happy, getting enough socialization, having enough fun, if they consider themselves clean at the moment, have to go to the bathroom, etc. Kids have this box too, but they don’t know how to tell you about it. When Little Miss Minion was a couple weeks old, I took a class at the NICU about how to take care of a preemie. Preemies have different needs and reactions than full-term babies, so the NICU hosted classes to teach parents how to interact with their babies. One of the things they taught us was that preemies usually have a specific reason for crying and it is just a matter of figuring out what it is. We had to become experts at “reading the Sim-meter” for LMM. Was she hungry? Tired? Was there too much stimulation? Too much noise? Too much movement? Unlike full term babies, who usually love being rocked, preemies (especially micropreemies) DON’T handle rocking well. We got to be pretty good at reading LMM and figuring out what she wanted so that she could rest and grow stronger. Now that she’s a rambunctious 4 year old, its a little easier to read her meter because she will mostly tell us what she feels. Due to her shunt, she has an extra line on the meter, and she isn’t great at reading that one yet. Since we can’t see it, we aren’t always sure whether we are reading it right either. For example, yesterday we went to see a movie in the theatre for the first time with Little Miss Minion. It was a lot of sitting and she was late for her nap and lunch by the time we got home. She said her head hurt and she felt “yucky.” This causes instant alarms to go off because of her hydrocephalus, but since we don’t have a personal MRI in the basement (anyone know where to buy one?) we have to guess. She woke up from her nap and said she felt better, her head didn’t hurt anymore, and she didn’t feel yucky, so we are hoping it was just from being overtired. But since we can’t see the Shunt Line on her Sim-meter, we were deciding what the plan would be if we needed to take her to the hospital.
  2. Free Will. There is an option on The Sims to turn off Free Will. This means that your Sim will do whatever you tell it to do without stopping, unless the Sim-Meter drops to red in too many categories and they have a breakdown. In real life, there is no such option. You can tell your kid to put their shoes on for three hours straight, but whether or not they actually do it is up in the air. Hopefully, your kid listens on the first try, but usually it takes a couple of reminders and maybe a time out for them to finally do it. We are pretty lucky in that LMM usually pays attention to what we tell her to do, but if she doesn’t want to do it, good luck.
  3. Fun. Your Sim-meter will tell you if your Sim is having enough fun (or at least, doesn’t hate what they are doing). Things that bring down the Fun-Meter include practicing speeches for Charisma points, doing homework, watching something boring on TV, and doing anything that they don’t want to do. While you would think that this would translate well to real life, it is surprisingly difficult to pinpoint. This weekend, LMM was all energy and bouncing around. She was also really annoying, yelling gibberish songs and not listening to us. It wasn’t until late Saturday that we realized what was wrong. Since it is SO HOT outside, she hasn’t been spending as much time playing outdoors as she usually does. She was literally running in circles Saturday afternoon, which I think was the last puzzle piece. She wasn’t miserable, but she wasn’t having FUN, which for her is getting outside or running around and playing. We set up a little splash pool in the backyard and let her play in that for a while, then chased her around the house once it got too unbearable to be outside. Her mood improved and she paid more attention to us.
  4. Building skills. Your Sim needs to build their Skills to progress in their job and in their status. Little kids have to be taught to walk, use the potty, etc. Adults have to practice speeches to boost Charisma, work out to build Fitness points, etc. The same holds true in real life. You have to build skills and improve on them to succeed in most aspects of life. For LMM, we are focusing on fine motor skills that will improve her writing later on. We try to blend this with the Fun category so she enjoys it, such as painting a picture or coloring nicely. Coloring inside the lines may sound like a cliché, but it helps fine motor skills to grow as  the child controls the movement of the crayon with more precision.
  5. The last thing is the timed Life Stages aspect of The Sims 2. If you know how to do it, you can hack into the coding of the program and pause your Sim in any Life Stage so that you have time to get them where you want them. For example, you might have a Baby Sim and in 4 days, the baby will turn into a Toddler Sim. A week later, the Toddler will be a Child, then a Teen, then an Adult, etc. Certain people like myself might want to freeze time so they can perfect their Sim and max out all their Skills before they move on. This doesn’t happen in real life. You have to work with the time you have.

The Sims is a fantastic computer game and I don’t even know many hundreds or thousands of hours I spent in the glow of the screen as I shepherded countless Sims to glory (or death, because I wanted to have ghosts in my fancy mansion). And even though it is just a game and all of my points above are also common sense, I’m a visual person and I thought the parallels to gameplay and real life were interesting. I hope this has been amusing and entertaining for you. And maybe, if you find yourself feeling “yucky” one day and you can’t pinpoint WHY, go through your Sim-Meter and see what is low.

Three Years of Blogging

Three years ago, I started this blog as a way to update friends and family about what was going on with Little Miss Minion. Our cell phones were blowing up with messages and phone calls, all wanting to know the latest on our little family. It was nice that so many people wanted to know how we were doing, but cell phones are a NICU nightmare for germs. I created this blog as a way to update everyone at the same time, reducing our need to touch our phones while in the NICU, and cutting out the time it took to answer everyone individually. This let us have more time to spend together, sitting on the couch in our room in the NICU, staring at the tiny little human growing in the incubator.

To everyone who reads this, thanks for being a part of our NICU journey.

End of an Era

A few weeks ago, Little Miss Minion had a special education evaluation through our school district. They did a series of tests to see how she performed in several areas, like speech and gross motor skills. This morning, we got our answer. Little Miss Minion has been disqualified for further services. This means that, according to the school district, she is caught up with her peers on gross motor skills, speech, language, and cognition.

It’s a strange feeling to know that we don’t have to schedule weekly speech therapy and physical therapy anymore. We’ve had someone come to our home to work with LMM ever since she came home from the NICU. So many appointments, tests, clinics, screenings. Part of me is a little in denial. How can my one pound fourteen ounce 28 weeker NOT qualify for additional services? She’s had five brain surgeries! She has actual brain damage (called periventricular leukomalacia). She spent the first 3 months of her life under 24 hour care in the best NICU in our area.

She caught up. That’s how she doesn’t qualify. Not only did she have to consciously learn to breathe on her own, how to suck, swallow, and breathe while taking a bottle, how to regulate her own temperature, how to regulate her heartbeat, how to live in the world three months too soon, but she did all that and more. 36 months after her dramatic entrance, she’s caught up to where she should be. At this rate, who knows how far she can go?

Our next steps are to come back for another evaluation (if we feel like she needs it) in about 7 months and to continue to be utterly impressed by our little rockstar.

Advocacy Day

As I mentioned before, our Minion family was invited to join other families in a trek to the state capital for the March of Dimes Advocacy Day. It was the first Minion Family Roadtrip!

We drove up the night before Advocacy Day and stayed in a hotel (graciously supplied by the March of Dimes). Little Miss Minion serenaded us for about half of the drive with a mashup of “twinkle twinkle little star” and the alphabet. We had hoped that she would fall asleep, but that only happened in the last thirty minutes of the drive.

We arrived at the hotel and checked in, brought up our luggage, and crashed. Little Miss Minion does not sleep in our bed at home, so she was very excited that Mr Minion and I were joining her. The catch is that she likes to sleep on her back, starfish style. And she’s never used a pillow. So that was an interesting several hours.

We woke up, got cleaned up, and sat down for breakfast (which was surprisingly good), and then made the short trip into the capital. After parking and walking to the building, we found ourselves inside the huge building and wandered until we found the March of Dimes area. There is large open area where different lobby groups can reserve space with tables and chairs for their members to wait between meeting their representatives. It’s kind of like home base. We met up with the group there and read over the materials we had been given. For each meeting we had scheduled, we had a folder with the information about the two bills we were lobbying for, information about how the bills could help people, and our personal stories. Several weeks earlier, we had been given a template to fill out that would share our own story with the NICU. We were also given a folder that contained copies of everything for us, including our schedule.

Our first meeting went well, and our personal story was well received. Having told the story WITH Little Miss Minion present and WITHOUT, it’s much easier for the audience to tell it with her there. People don’t expect good things when you start off with “28 weeks, and weighed 1 pound 14 ounces” and you can’t really blame them.

Our other meetings were good, and we got to sit in on a session of the House. The March of Dimes presented one of the representatives with an award for her work on the house bill. We were provided with a great catered lunch from Panera in between our meetings, and there had been water and soft drinks in a large cooler available as well.

It was so nice to see our primary nurse J again. I see her every once in a while when I run into her in the NICU but she hadn’t seen LMM since her 1st birthday. And Little Miss Minion was so well behaved the whole time. She got a little fussy towards the end of the day, but that was it. She slept most of the way home, and we were all in bed by around 7:30 that night. It was a long day, but a fun and rewarding one. I hope we can do it again next year!