Tag Archive | vp shunt

Two Years Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. ­čÖé

Neurosurgeon Follow Up

We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!

Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.

So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!

He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.

 

Hydrocephalus Awareness 


I first became aware of hydrocephalus in July of last year. Little Miss Minion was still in the NICU and I had gone back to work to allow for time off once she came home. I got a phone call from one of the neonatologists telling me that they had done a follow up head ultrasound (standard procedure to check for brain bleeds) and that they had noticed enlarged ventricles. I was told that a specialist would meet us at the NICU that afternoon to talk to us some more about what that actually meant. I immediately went on break and looked up “enlarged ventricles” on my phone. I read about brain damage, developmental delays, seizures, and death. The images that the search turned up were of babies with basketball sized heads. When Mr Minion and I arrived at the NICU and met the specialist, we were in shock. 

The specialist, who turned out to be a neurosurgeon, explained that the meningitis and sepsis that our daughter had survived a few weeks earlier had caused damage in her brain. Along with four tiny spots of periventricular leukomalacia (brain damage), the infections had blocked the third ventricle of the brain (which functions like a drain) and had also caused the brain to either create too much or not absorb cerebrospinal fluid fast enough, causing a buildup of fluid inside LMM’s brain. The only “cure” was to insert a man made drain into her brain: a ventriculoperitoneal shunt (VP shunt). This would become a pathway for excess fluid to drain out of her brain, where it would cause damage, and redirect it into a space near her stomach to be absorbed. 

Our preemie, who weighed about 4 pounds at the time of her surgery, underwent her first brain surgery at just over 2 months old. A few weeks after she came home from the NICU, she needed another. A few weeks later, she had another. And a few weeks after that, she had one more. 90% of shunts fail within the first year. 

Today, you would never know by looking at her that our daughter is a Hydro Warrior. The only physical signs are two shunts in the back of her head, now hidden by hair, some scarring where her ETV was done, and some scarring on her stomach from where the shunt drain portion was placed. All of the tubing is internal. However, we live in the shadow of Hydrocephalus. At any moment, her ETV could close. A shunt could become blocked or broken. She could get a shunt infection. Any of those things would be an emergency situation, requiring an immediate trip to the ER and would result in surgery. There is no way to cure hydrocephalus. There is only treatment. 

Early Intervention and NICU Follow Up

Last night, we had our yearly meeting with the early intervention team and today, we had an appointment today with the NICU development team to see how Little Miss Minion is performing with her chronological vs adjusted age. Short story: she’s doing really well and everyone is happy with her progress. 

So yesterday was the Early Intervention meeting. Our case manager, the physical therapist, and the two of us discussed her goals from this time last year and made new ones. These are things like walking unassisted, talking more, using utensils, etc. We have these meetings every six months. She met all of her goals from last time, which is great. 

Today was the NICU follow up, which is more in-depth than the early intervention meeting. They get her measurements (weight, length, and head circumference), and then a physical therapist and an occupational therapist take turns playing with her and watching how she interacts with toys, how well she can do activities, what her skills are at the moment. They measure in five areas: gross motor skills (big movements like walking, crawling, sitting, standing), fine motor skills (picking things up), cognitive skills, receptive communication (identifying objects, such as pointing to a book when you ask for it), and expressive communication (imitating words, playing peekaboo or other games). 

Because of her prematurity, we use her adjusted age for milestones. This means that she should be measuring around 12 months for these areas of skill, even though she is 15 months old chronologically. 

Gross motor: 13-15 months. 

Fine motor: 11-12 months.

Cognitive: 12 months.

Receptive communication: 9 months.

Expressive communication: 11-12 months. 

Overall, these are really good scores. She’s always scored higher in motor skills and lower in communication, but she is progressing at a good pace. Especially given her history of prematurity and her hydrocephalus, she’s doing excellent. They also explained that the skills don’t all grow at the same rate. Since she’s been doing so well with motor skills, they would expect the other areas to suffer a little. The important thing is that they are all improving compared to last time, which they are. 
Another huge milestone: she walked about six feet tonight! 

Back to the NICU

Little Miss Minion had her ophthalmologist appointment on Thursday and I’m happy to report that she had no issues related to her prematurity! She’s probably going to get my eyesight, but hers aren’t bad enough to do anything about yet. And the doctor said she “doesn’t look like her chart” in terms of being a 28 weeker with hydrocephalus. Her eyes look remarkably good, especially considering her rough start. 

Before the eye doctor, we went to the hospital cafe for breakfast. On the weekends, we would usually get breakfast and sit outside for a while before heading back in to the nicu. It was so strange to have little miss minion with us as we walked the halls. 

After breakfast and her eye appointment, we stopped by the nicu. It was surreal. Neither of us had been back since the day she was discharged, but it was like we had never left. We got off the elevator and the first picture we saw was the one I saw every day last summer. We walked down the same carpeted hallway. I stopped to use the bathroom and washed my hands with the same soap I scrubbed up with for 84 days. We checked in at the desk where we had to sign in each day in order to see our daughter and waited for one of our primary nurses to come out and meet us. As we stood together in the hall, I watched the people coming and going from the nicu. There were grandparents coming to see their new grandchildren. There were mothers in all states of the nicu process: brand new ones who could barely walk from their c sections, ones who had been there for a while, ones who were bringing guests to see their fragile babies. 

I wanted to hug them, to tell them that one day, they will get to walk out the doors with their babies. To show them little miss minion and tell them about her start. That they shouldn’t lose hope. 

Neurosurgeon Follow Up

Every couple of months, Little Miss Minion has a sedated MRI to make sure that her shunts are working well and that any excess cerebrospinal fluid is being drained. She had one today and things are looking good.

She seems to have slight issues with sedation, most likely due to her preemie lungs. Her oxygen levels dropped slightly during the procedure, but they were able to quickly correct the problem. Preemies, especially micro preemies, have underdeveloped lungs at birth and it takes them several years to catch up.

The actual scan was mostly good news. Everything looks good, except an area near her ETV site. It is slowly getting bigger, which could mean several things. It could be that her etv is getting blocked or is scarring over. It could stabilize itself. Or it could get worse. Right now, her neurosurgeon is confident that she’s not having any hydro issues and that the area is safe to observe. We’ve been cleared for 6 more months!

Another saga of preemie problems happened Saturday night. LMM had a low grade fever and threw up twice. Because of her shunt and her prematurity, the nurse line recommended that we bring her in to the er for evaluation. Could it be a shunt infection? A malfunction? Stomach virus? The doctor on call was ok with having us just watch her closely,  since we were going to have an mri today, but we have to be on constant alert for shunt issues.

11 Months Old

It’s hard to believe that Little Miss Minion is already 11 months old. In the past couple of weeks, she’s said her first word (Mama), pulled herself up from sitting, started to crawl, and has tried lots of new foods. Current weight is 15 pounds, 8.6 ounces. She’s outgrowing most of her 3 month clothes and starting to fill in her 6 month outfits. In one month, we can start taking her places in public. We will still need to carefully monitor the germ situation, since her lungs are still catching up, but her immune system should be significantly stronger, although since she’s still just a baby, it still won’t be as strong as yours or mine. And it still won’t be caught up with her chronological age, but it will be strong enough that we can expose her, with extreme caution. Lots of Lysol and hand sanitizer, but she will be out in the world!