Saturday, February 25, 2012

Head Case

Casted: 7 weeks + 1 day. Time until UNcasted: 5 weeks + 3 days!

I can now officially say we are over the hump in terms of Kaia's cast time. We had an appointment at the hospital on Friday and since we were early I decided to swing by the Ortho department to see if they had booked Kaia's "FREEDOM" date yet. They had, and the nice front desk lady gave us our appointment of April 3rd at 9:15am. Whoo hoo! Can't wait. Good news is that she'll be out for Easter! An awesome excuse to wear cute outfits!

However that's about the only good news we gleaned from our Friday trip to the hospital. It was a bit of a mess and very stressful. We arrived at 8 am and Kaia had two ultrasounds scheduled back to back for 9am and 9:30am and then an appointment with the doctor afterwards.

I'm not sure if I've mentioned it on here (mainly because I thought it was such a NON-issue that it wasn't worth mentioning), but a few days after Kaia was born she had a head ultrasound. This is pretty standard in the preemie world to check for brain bleeds. In the preemie brain, some of the small vessels that line the ventricles of the brain are prone to rupturing because of the many complications and body stresses that affect premature babies. The earlier the baby is born, the increased likelihood of brain bleeds being an issue, ie: your 24 weeker is almost guaranteed to have at least a small bleed (or possibly a very large bleed which can be disastrous), while in your 32 weeker (like Kaia) it's less likely.

At birth, Kaia didn't have any brain bleeds, BUT it was noted that her ventricles (the spaces inside your brain where cerebrospinal fluid is made) were asymmetrical with the left being larger than the right. At the time, her doctors were fairly unconcerned and assured me that they would just follow it with repeat head ultrasounds. We had a few more checks while Kaia was still in the NICU and it never seemed to improve (ie: even out in size), but it never got WORSE either. Eventually, since we were considering a helmet for Kaia due to the shape of her head, her pediatrician made a referral for us to go see a Neurosurgeon, where she figured we could have both the ventricle issue assessed as well as the need for a helmet. Neurosurgeons deal with both the inside (brain) AND the outside (shape of the skull) so we thought "hey, we'll kill two birds with one stone" and make sure Kaia's insides are cool and then we'll get a helmet to fix the shape of the outsides.

I was even less concerned about the ventricle issue after her NICU follow up appointment in January where the neonatologist who saw us said that they quite often see ventricle asymmetry in preemies and have no real evidence to say it means anything. Perfect!

So, Friday we went for a repeat head ultrasound. I was completely and totally unworried about the ventricles and I was focusing all my mental energies on making sure I asked questions about the helmet that it took me a second to realize that the Neurosurgeon was recommending that Kaia go for a CT scan to check her brain! Uh...what? Basically he said that the ventricles haven't improved (and he might have said they are slightly bigger, although I'm wracking my brain and I can't remember his exact phrase-ology now) he wants to get a better picture via CT. We're setting that up for 6-8 weeks from now. I do remember him saying that while he's pretty sure the ventricle asymmetry is 'just her' and not going to be an issue, 'the possibility of her needing a shunt isn't zero'. Below is a picture of what a shunt is.
A shunt is an internal drain that pumps fluid from the overfull ventricles and puts the fluid into the belly where it's absorbed. The shunt is placed in the body permanently. Associated complications with a shunt include: infection, blockage of the drain, or over drainage. However, if ventricles aren't drained properly it can lead to hydrocephalus and brain swelling resulting in headaches, nausea, vomiting, double vision, altered consciousness, mental disability and can lead to death. NONE OF WHICH YOU WANT TO HEAR ABOUT YOUR CHILD!!!!

I was literally in shock. Um...wait a second...Kaia's insides are's all the outside stuff we had to fix: hip, then head and then we're golden, right?

After lobbing this bomb, the surgeon then goes on to say that we'll needed to get started on the helmet as soon as we can if we want it to be effective. Helmets only really work to correct head shape up until age 1, and since Kaia's almost 8 months actual and 6 months corrected, we'll have to get started soon. I was prepared for this, so I was able to ask intelligently and reasonably (I thought) ask if we could possibly delay the helmet until after she's out of the cast. It's only a month or so away and her head is only mildly odd shaped, so maybe we don't need that much time in a helmet anyway? Plus, who wants to wear TWO pieces of hot, itchy, restrictive equipment at the same time if it's possible to avoid it? The neurosurgeon look at me and asked in a not very nice tone "well, is that for your convenience or hers?"


Um...HERS!!!??? Obviously!!! I don't give a shit about what she's wearing. I care that she's happy, and comfortable, and not being tortured by not being able to move the lower half of her body AND have a hot, itchy helmet on her head!!!

The Neurosurgeon's response was: "Well she won't remember any of this anyway".

I have the unfortunate communication defect of freezing up and not being able to speak intelligently when I'm mad, so very quickly the appointment came to an end I was packing Kaia up and rushing out of the exam room. I was so overwhelmed I just wanted to get out of there. I have heard that "won't remember" phrase SO much about the cast and I'm really starting to HATE it, so when he said it I saw RED!

I understand why people say it. I KNOW I said it to parents working in the NICU. But when I hear "well she won't remember it" as a parent it just sounds so dismissive. As if it's of no consequence that my baby might be in pain or uncomfortable. It's also dismissive of the real distress one feels as a parent to have to put one's child through something that is painful or uncomfortable, even if it's for their own good. It's awful to watch your child be miserable and be able to do nothing. It's mentally scarring. Why shouldn't that count for something?

One would never say about a baby who has been abused or neglected "oh well, it's not like she'll remember it anyway". No, a reasonable person would be horrified that anyone could do something nasty to a helpless baby. So why is it okay to think that if Kaia is miserable or uncomfortable, and can't complain or ask questions or protest that somehow that's just fine and dandy?

Needless to say, I was upset when everything was said and done. I've since almost convinced myself that they are just being overly cautious with the CT. Since your brain is a pretty necessary organ, and 'hey we have the technology to do it, so why not?', let's just MAKE SURE that her brain is fine so we won't have to worry about it. Of course now the possibility that it IS something will be in the back of our minds until we learn more. It just feels like it NEVER ENDS!

Oh, and to top it all off, the second ultrasound that Kaia had was of her labia, which I was able to pay attention to because Kaia wasn't crying (like she was during the head ultrasound). I came home yesterday and searched ultrasound images of hernias, and from my (completely untrained) eye, I'm betting she has a hernia too. Boo.

Not exactly the news we'd be hoping for. One thing I've realize after coming home yesterday is that I need to have someone (Brian or my mom) come with me to these appointments. It's just too much work to have to haul Kaia around, keep her happy and fed and entertained, while also remaining calm and communicative with the doctors. I always seem to think "Emily, you're a nurse. Why can't you multitask and ask intelligent, well thought out questions on the fly, the way you do with patients?" I don't know, but I just can't. It's different when you're the parent.

Chalk it up to lesson learned.


  1. I'm sorry you have to deal with so much. Life is the same for us; you just go from one worry, stress and trauma to the next, with no break in-between. Just when you think(and hope) it will end and things will finally start to look're knocked right down by the next one.You keep waiting for your "break" to come but it never does. I know, it really SUCKS!!

  2. Oh Emily. I'm so sorry to read this. I really hope that Kaia does not have to have a shunt put in, she has been through enough with the hip cast and the helmet and all the rest. And I know I've only seen photographs but Kaia's head looks a lovely shape to me, hopefully she won't have to wear the helmet look and, that being said, does she REALLY have to wear the helmet and the cast at the same time?! I'm sorry that the neurosurgeon's response was not more sympathetic.

    Jessica had ventricle problems too but it all resolved itself in the end.I saw her final head ultrasound, would have been absolutely fascinating if it hadn't been my own child's brain.

    I'm so glad that i am not the only person who is annoyed by the whole 'won't remember' phrase! I must have been told it around a hundred times whilst J was in the NICU and I've always felt like I was being a bit unreasonable with my hatred of it. But as you say it isn't much comfort when you are seeing your child in pain in the here and now. It just feels really dismissive.

    Definitely try and take someone with you and Kaia if you can, especially if you have multiple appointments as it is hard work. Even with your professional background, it is very difficult, particularly if you are getting sucker punched with bad news from one appointment and then moving straight on to another. I always wondered where my rational, statistical brain went the moment I was sitting across from a neonatologist but yes, it is different when you are the parent. Most definitely.

    Roll on April!

  3. I did a lot of research on shunts when I was pregnant with Liam since he had hydrocephalus assoc. with his spina bifida and was hoping that the fetal surgery was going to prevent him from ever needing one.
    I am hoping right along with you guys that Kaia doesn't need one and the ventricle issue resolves. But good to hear that there is less than 6 weeks till that cast gets to finally come off. I bet that'll be so nice to have off her.

  4. You guys have been through so much. Your resilience is an inspiration.

  5. That's a lot of multi-tasking - I do hope you can get someone to go with you to the appointments to make it a little less stressful.