Tag Archive | vp 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.

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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. 🙂

Little Miss Minion’s 4th Gotcha Day

4 years ago today, Mr Minion and I watched as the wires and stickers that had monitored our baby’s heart rate, oxygen levels, and respirations for the past three months were removed. We could see her whole face clearly, without the tube that had gone up her nose and into her stomach. We could pick her up and walk more than a few feet from her crib, something that would have been impossible due to the wires that monitored her vital signs. I vividly remember holding her carefully in my arms and slowly spinning in a circle near the large window in her room in the NICU that we had called home since May.  

As we waited for the discharge paperwork to be signed off on and for our nurses to go over instructions with us, I kept expecting the next person to come into the room to tell that there had been a mistake. That we couldn’t take our daughter home yet. We packed up her tiny preemie outfits, the mobile we had brought her to put on her hospital-issued crib, and her bottles. We also packed the jars of protein powder that we would have to supplement her bottles with for the next several months, and the diapers that were only slightly smaller than my cell phone. We packed her special issue Ultra Preemie bottle nipples, since she was still unable to handle the regular Preemie ones that were available in some stores.  

When our nurse finally came in and asked us if we were ready to head out, I could feel my eyes burning with terrified, excited, nervous, and overjoyed tears. We had arranged Little Miss Minion in her car seat and strapped her in, using rolled up towels, blankets, and washcloths to make sure she was secure. I carried her through the door of her room in the NICU and we walked through the unit, with Mr Minion and our nurse helping to carry the rest of her stuff. As we waited for the elevator to arrive, I waited for someone to run through the double doors with the news that we had to stay. The elevator arrived and the doors remained closed. We walked through the lobby of the hospital, seeing other parents leaving with their two day old full term babies as we left with our 3 month old, 5 pound miracle, who had already survived a Group B strep infection, meningitis, sepsis, and one surgery to implant a shunt to control the hydrocephalus she had developed as a result of those illnesses.  

When we made it to the front of the lobby, I tilted my head to look away from the Maternity Welcome Center, something I still do each time I visit the hospital for my volunteer work. We turned to walk through the vestibule that led to the parking garage and my daughter felt fresh air on her face for the first time since she had been born. We packed her things in the trunk and snapped her carseat into the back of our car. I rode in the back with her, and we stopped to get McDonald’s on the way home for lunch. The packaging was Minion-themed, and I still have a picture of it somewhere.  

While the memories of her birth and the immediate time before and after are fuzzy, thanks to the magnesium I was receiving by IV to prevent seizures or strokes, her Gotcha Day is carved into my memories with a chisel and I will remember every tiny detail of that day for the rest of my life. I will also remember how, when we took her for her first pediatrician visit a few days later, I got a compliment from a woman in the lobby who saw my ridiculously tiny baby and assumed she was a newborn, and said that I looked amazing and she couldn’t believe I had just had a baby. Since Little Miss Minion was three months early, I hadn’t really ever definitely looked pregnant, so after she was born, I looked mostly the same, except less puffy and swollen from the preeclampsia. I had only gained about 15 pounds, and between the stress of the NICU and exclusively pumping, I had lost about half of that. I just said thank you, laughed a little, and darted into the well-baby room to escape from the germ-filled waiting room. 

When I look back on where we started, I am amazed all over again at the tenacity of a 1 pound 14 ounce baby, born 3 months too soon, and the marvels of modern medicine that allowed us to bring her home. It solidifies my yearning to return to the NICU as a nurse, and makes me treasure my time spent there as a volunteer, speaking with parents who have found themselves in the NICU.  

Happy 4th Gotcha Day, Little Miss Minion. I’m so proud of you and everything you have overcome.

 

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.

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.

Preemie Awareness Month

It’s that time again!

I saw this poem today and wanted to share. 

It reminds me of hearing all the stats in the NICU about how small and early LMM was, and how she might have this problem or that one. And then listening to HER, as she proceeded to kick the crap out of the statistics and showed us what strength really means. 

So happy preemie Awareness month. And remember: anything can happen, child. Anything can be. 

Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital.