by Kayte

Lola had her follow up MRI and the results show that everything looks great! The cyst is still gone, the ventricles are still shrinking, the shunt it still working. This is our second good report post-surgery: a mom could get used to this!

{Bottom Right 7/2 Pre-op} -- {Bottom Left 9/4 Post-op} -- {Top Left 12/2 Post-op}

It’s such a big weight off our shoulders. The symptoms of shunt malfunction aren’t very definitive – fussiness, lethargy, vomiting; symptoms than can be caused by any myriad of less serious illnesses. A weird part of me was excited to get another MRI – the part that worries every time Lola is extra fussy or throws up at a meal. Now I can stop analyzing every little thing she does because we have an answer!

The long-term plan is another office visit in 6 months, another MRI in 1 year, and as long as she is progressing well we’ll alternate yearly between office visits and MRIs.

Home Away from Home

by Kayte

Whew what a morning we’ve had – and it’s not even noon yet!

We got up at 7am, loaded into the car, and headed to the pediatrician for a walk-in appointment (LOVE our pediatrician, btw). Max & Lola’s Synagis medication was delivered yesterday so I wanted to get them their shots ASAP. Usually babies only get approved for the uber-expensive shots during their first year of RSV season, but somehow our pediatrician managed to get them both approved for a second year. (Did I mention the love?) That medication saved Max from a really nasty illness earlier this year, so I’m really happy they’re getting the protection again.

I had a laundry list of other things to discuss with the pediatrician – when it rains, it pours:

  1. Lola fell and hit her head a couple weeks ago so we’ve been watching her extra closely. It’s hard to isolate her symptoms with everything else going on, but she has been extra fussy and grabbing at her ears/head. Just to be safe we’re going to get another MRI. He might not have ordered it with the traditional anesthesia MRI, but since CHLA can do the limited version with no anesthesia, he didn’t think there was a down side. Better safe than sorry.
  2. Lola has had two bloody noses in the past week – talk about scary! Both times I was out of the room, and when I came back she was covered in blood. Thankfully the doc wasn’t too worried about this one. He said it’s probably due to a combination of the dry air and dehydration from her sickness last week. A humidifier in their room at night and a little Vaseline in the nose should do the trick.
  3. Also due to last week’s sickness, Lola has been having very painful poops – screaming/crying the whole time. I feel awful for her, but it’s nothing serious – everything is just irritated from all that going and wiping. There’s not a lot we can do for her, just keep it clean and try not to irritate it any further.
  4. I still had the order for Lola’s bloodwork from the GI. We were waiting for our visit to the endocrinologist to do it, but since we’re not seeing him until January we got it out of the way now. Poor Little Miss’s veins are so tiny they always have a hard time drawing blood. They had to poke each arm to get enough to fill the vials, then she got a third poke for the Synagis. Lola was NOT a happy camper by the end of the visit.

Oh right, then I still have a SECOND sick child. We were a little concerned because some of our baby food was recalled this week, and we had mostly finished it all already. We were wondering if Max had food poisoning, but the doctor confirmed he’s just dealing with this stomach bug that’s going around. The poor guy has lost so much weight. A month ago he was 22lb 9oz and today he was only 22lb 1oz. I’m not too worried though. Lola was down to 15lb 12oz last week when she was sick, and she’s already gained it back plus more – 16lb 9oz! So that was a bright spot in our morning.

Between the office visit, blood work and Synagis shots we were at the doctor’s office for two hours. It was an exhausting start to our day, but I feel like we got a lot of good housekeeping done. All of the issues were kind of building up to a breaking point, so I’m glad to have my mind set at ease on most points.

Okay, now it’s noon. Can I have a glass of wine?

MRI Brain Limited

by Kayte

We spent another long day at the hospital today. Lola’s follow up MRI was scheduled for noon and an appointment with the neurosurgeon to follow at three. Lola has been acting and developing amazingly well since the cyst surgery, but we never know for sure until we look inside.

CHLA offers a procedure called a Limited MRI where they’re able to take a smaller range of images in a shortened amount of time. Full-range MRIs are an hour long and require sedation, but today (after a lot of waiting) we were in and out of the machine in less than five minutes. It was great. And rather than have to wait a couple days for the results, we walked right over neurosurgery to discuss.

Today (top) vs. July (bottom)

I was understandably nervous. We haven’t had good luck with MRIs in the past. I was hoping today we would just get a straightforward, good report for once, but I was trying not to get my hopes up. Turns out it was our lucky day. The MRI result looked great. Lola’s ventricles were smaller and the cyst looked like an undefined, deflated balloon. The surgery worked!

It’s strange to think that this neurosurgeon, who we have only ever talked to TWICE, may be someone who will have one of the biggest impacts on our life. I really wonder where we would be today if we hadn’t gotten a second opinion and had let that other guy put another shunt in our little girl’s head. As with everything, it’s probably best just to keep looking forward. After today I feel as though I can release the breath I’ve been holding since July and really embrace the progress Lola’s made this past month.

Endoscopic Fenestration

by Kayte

Lola is scheduled for surgery at CHLA next Friday. They are going to perform a procedure called endoscopic cyst fenestration (ECF). Using the existing shunt tract, they will insert a tiny camera/instrument into her ventricles and create holes in the cysts (yes, there is more than one). This will allow the trapped cerebral spinal fluid (CSF) to flow freely within her ventricles and out through the shunt. Think of the cyst like a water balloon in a glass of water, and the shunt like a straw in the glass. If you try to drink out of the “straw,” you can only drain the “water” in the glass on the outside of the “balloon.” The neurosurgeon is going to create holes in the “balloon” so all the “water” will be accessible to the “straw.”

Although the two neurosurgeons we met with had different opinions on the matter, we feel that ECF is the less invasive procedure, and the one more likely to be successful in the long run. ECF will directly address the problem(s), whereas a second shunt would only be managing the symptoms. And because ECF will be using the existing shunt tract, hopefully there will only be one incision on her head (as long as they don’t have to adjust the tube in her belly). A second shunt would require at least two incisions (head & abdomen) and drilling through bone & brain matter. Not to mention that the second shunt would leave us with the uncertainty of additional permanent hardware.

There is always the risk that the cyst could heal itself and reform, at which point we would have to decide whether to try ECF again or to place the second shunt. But if we did the shunt now, there is always the risk that it would malfunction and we would be back in surgery anyway. There are no certainties, and no right answers. We just do the best we can with the circumstances we are given.

MRI – Take Two

by Kayte


An x-ray of Lola's shunt

Last week Lola’s head was feeling fuller so we took her to the pediatrician. He wasn’t immediately concerned, but got in touch with neurosurgery who ordered another MRI to check things out.

The results showed the cyst they found in April has gotten bigger these past two months. The neurosurgeon wants to place a second shunt on the right side of Lola’s head to specifically address/drain the cyst. Your brain has four ventricles which are all interconnected. Usually a shunt can be placed into one ventricle, and it will drain all of them. Right now the cyst is blocking some of those connections, so the right side of her head isn’t draining properly. Hence the second shunt.

To make matters worse, the neurosurgeon who has been attending to Lola since she was born retired last month. Our old surgeon mentioned some different strategies than what is being proposed now, which is throwing us for a loop. We’re trying to get a second opinion just for reassurance, but the clock is ticking. And while the new guy isn’t exactly warm and fuzzy, but he’s reputedly an amazing surgeon.

It seems there is no end to the things that can go wrong. We were so worried about Lola’s shunt malfunctioning, the idea of a second shunt came out of left field. And given her track record with the current shunt, the thought of now having two pieces of hardware to worry about isn’t appealing.

We hate that she has to go through this again, but there’s always the hope that maybe this will help her feel better and pave the way for eating & PT improvements. Not that she seems to be feeling poorly. Our parent-instincts seem to catch this stuff early on, before any symptoms really set in. Lola is in great spirits.


The surgery is scheduled for next Wednesday. Not an emergency, but something to be addressed sooner rather than later. In the meantime we’re just trying to soak up every ounce of joy from our little girl, knowing she’s going to have another long recovery ahead of her.

MRI Followup

by Kayte

20130514-215402.jpg Today was our followup appointment with the neurosurgeon to discuss Lola’s MRI results. The doctor was very good about explaining everything and not dismissing us with “everything’s fine.” The bottom line is that, clinically, Lola is doing great so there’s nothing that needs to be done right now. He said the cyst was an incidental finding, and any treatment for the cyst would be treating the MRI image, not the patient. To put her through another surgery right now just doesn’t make sense. As long as she is making progress developmentally, and not exhibiting any adverse symptoms, we don’t need to worry.

The cyst was a lot bigger than we expected – it’s nearly all the white area in the middle of the image (you can see the faint gray membrane around it in the shape of a kidney bean). The good thing is that it is fluid-filled (which is why it is white) as opposed to colloid- (gelatinous) filled, which means it has less effect since there’s already fluid in your head. Treatments include surgery to puncture the wall of the cyst to release the fluid and allow it to drain through the shunt, or to grab the membrane wall of the cyst and remove it. But again, both of these are brain surgeries that would require penetrating brain matter, so we want to avoid that if possible.

The MRI did show that Lola’s hydrocephalus is reduced and there isn’t pressure on the brain matter. The shunt is working! The white finger-like inlets on the perimeter of the image show that everything is relaxed. If there was pressure, they would be compressed and not visible. The image also confirmed that the shunt is well-placed.

The MRI also found a “partial agenesis of the corpus callosum.” The corpus callosum is the connection between the right and left side of your brain, and agenesis means an abnormal development. It sounds scary (and Google results are even scarier) but both the pediatrician and neurosurgeon said not to worry. The brain has ways of forming new connections, there are people without a corpus callosum that are perfectly fine, and Lola is doing so much better than an image can tell.

I think this MRI might just be a case of too much information. If we didn’t know about any of this, we wouldn’t have reason to suspect (or worry) about it. The neurosurgeon suggested a followup MRI in 6 months for comparison. For now I’m going to trust in my doctors, stay away from Google, and keep my focus where it belongs – on my beautiful little Lola and all the amazing progress she is making.


by Kayte

We went in for our monthly checkup on Wednesday. I was nervous again all day and the visit itself didn’t make me feel much better. They do the weight checks at the beginning of the appointment, and my heart sunk when they put Lola on the scale. 13lb 14oz – only a 2oz gain from last visit and she’s only gained 6oz in the past three months. I was especially bummed because she has been eating much better, I thought for sure we’d see some results.

The doctor said it could be a couple things; 1) her calorie intake is too low and needs to be increased or 2) her body may have a hormone imbalance and be processing the calories incorrectly. #1 is a (relatively) easy fix so he wants to focus on that for the next month to see if we can rule out #2.

I’m going to start offering her more ounces of breast milk, focusing on higher calorie foods (avocado, cream cheese), fortifying (adding formula/calories) everything and supplementing our nursing sessions with formula. The doctor said at this point the babies are probably outpacing my milk supply, as they should, but Max is making the correct transition to solid (puréed) foods, while Lola is not.

To give you an idea, Max consistently demolishes (2) 8-ounce bottles and scarfs down 3 meals of 6-ounces solids (purées). Lola just started drinking 6-ounce bottles (which she doesn’t always finish) and only eats 1-2 ounces of solids at a sitting (on a good day).

As a mother, it’s hard not to take personally. Your biggest responsibility is to grow your babies, and it’s pretty disheartening when it doesn’t happen. The therapists are always good about reminding me that eating is a two-way street; it’s not like in the NICU days when you could gavage meals through a tube straight into her stomach. I can only coax so much, ultimately Lola is the only one who can do the actual eating.

At least Maxie makes me feel good. He gained nearly another pound in the last month and now weighs 18lb 6oz. Big boy!

In addition to all the weight stuff, Lola’s head also grew from 47.5cm to 48cm. The doctor wasn’t automatically worried – it could just be normal growth. Her fontanelle is still very sunken and she’s doing great overall. He also looked at the MRI photos and saw all the cysts (which we knew about). He’s not able to interpret anything for us though, so we’re just waiting for our neurosurgery appointment next Tuesday. Sometimes I just want to run away from all these doctors and hide someplace where everything is okay.

I would just like to reiterate how amazing our pediatrician is. He called me at home after our appointment to follow up, and actually talked to me like a human being. He was asking how we handle all of this the way we do, and it took me a minute to realize he was actually asking me. Person-to-person, not just doctor formalities. In my experience with medical personnel that’s pretty rare these days. It’s so nice to feel like he actually cares about us people, not just patients.

MRI Results

by Kayte

After 3 voicemails, 2 conversations and 6 days later…we finally got the neurosurgeon on the phone to discuss Lola’s MRI results. He said everything looks fine, but the MRI did reveal several cysts in Lola’s ventricles which are a result of her previous meningitis. He said the cysts aren’t affecting anything, and there is nothing to be done, and while I do trust him, I also know his sense of urgency is on a different plane than ours. We have a follow up appointment on the 14th to view the images and discuss further. Until then I’m just going to focus on how great Lola is doing and trust in the doctor’s assessment of “fine.” If there’s something to worry about later, I’ll worry about it then.

Brain MRI

by Kayte

The earliest we were able to schedule Lola’s MRI was May 30th, but UCLA called earlier this week to let us know they had a cancellation and could get her in this Thursday. It was perfect since Aunt Karen was in town and could look after Max (who wasn’t allowed to go).

An MRI is a little complicated with a baby. They have to hold perfectly still for nearly an hour to get a good image, so sedation was necessary. We’ve never had Lola sedated without surgery, so we weren’t sure what to expect, but it was relatively easy. She woke up, ate and we were out of there 30min after the test finished. When we got back home she was completely recovered – no lingering drowsiness or side-effects.

Now more waiting for a doctor to call us with the results.