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Update on Liana's soft spot

Posted Jan 07 2010 12:00am

I'm sorry that I haven't kept you guys in the loop on Liana's bulging soft spot ... but so much has happened this week, it was hard to keep up with it all, let alone blog about it!
On Monday, I took her back to the pedi for a follow-up, and I could tell she was concerned. She also felt that Liana's head was maybe growing a little too fast, which could further indicate that something is causing extra cerebral pressure. However, she said the next tests would all be quite invasive (MRI, for which she'd need to be sedated or a spinal tap), and she wasn't quite ready to do that to an otherwise healthy child. She suggested to wait another couple of weeks and see what happened. Bjorn and I talked it over that night and decided we really didn't feel safe waiting for 2 more weeks. After the pediatrician had mentioned on Monday that it could possibly be a vascular issue, we were specifically concerned that her bulging soft spot was in some way related to the TTTS, (which is a vasucalar disease) or the other complications she had in-utero. So I called back the pediatrician and ask for a referral to a pediatric neurologist, which she was more than happy to make.
In the mean time, Liana had a helmet adjustment, and when I told the cranial cap technician about her bulging soft spot, she was also concerned and didn't think Liana should be wearing her helmet at all. I had taken it off after we got back from the CT last week and she didn't wear it all weekend, and had also called the cranial cap doctor about it but not yet heard back from him. So as of yesterday, Liana is completely helmet-free, at least until we figure out what to do next.

Then, this morning, we had the neurologist appointment down at Children's - and oh my gosh, what a chore!
We were with the doctor for maybe 30 minutes but the whole thing turned into an almost 5 hour ordeal! What should have been a 45 minute drive there took TWO WHOLE HOURS! I just about died! And the roads weren't even that bad ... but I guess there'd been a few accidents and the whole metro area was a parking lot. For the last half hour of my drive there, I had DH on the phone who found me all these back roads online, because I swear, otherwise I might have never gotten there.
Thankfully, the crazy receptionist lady told me to be there 45 minutes early to "fill out papers" (which turned out to be exactly ONE form that needed to be signed), so I was technically "only" half hour late to see the doctor. Liana was such a trooper and hardly made a peep the entire 2 hours there.

About the appointment: It went okay and I guess she's fine. I was a little concerned that the appointment was so early in the day, because the bulging varies greatly depending on the time of day and is always worst at night. So of course, this morning, it was hardly bulging, just kind of "full". But the doctor was very thorough, both in taking her history and in examining her. Which reminds me: At some point as I am relaying the details of their TTTS and NICU stay to him he asks me if I work in the medical field - LOL! When you spent an entire year only thinking and talking about that stuff, I guess you kind of pick up the lingo. ;)

About the TTTS: It's always frustrating to me because often I feel I know more about the disease than many doctors do. I know it is relatively rare, but it does claim more lives each year than SIDS! At some point, the neurologist asked me if Liana's twin was a boy or a girl. TTTS ONLY happens in identical twin pregnancies, so yes, she'd have to be a girl. But also, there are just so many unanswered questions still - basically no one knew what exactly was going on for the last 7 weeks of the girls' pregnancy ... and in the same fashion, no one can tell me exactly if this could at all be related to the TTTS or not.

But all this to say: The neurologist is not sure if there really is a problem. He's not saying there isn't - but there might not be. He thinks her head growth is fine ... it was a little aggressive for a while but is actually tapering of. Again, he didn't see the bulging at its worst, but he didn't think it was anything to worry about at this point. He did mention (and I didn't know this) that preemies can have issues in regards to the production and subsequent absorption of spinal fluids, and that usually resolves on its own. So at least that's a theory ... and certainly one I could live with! He gave me some very specific neurological symptoms to look for in case her cerebral pressure was increasing ... and at this point I feel very confident that I would know right away if something was getting worse. On the other hand, I still don't like the feeling of constantly having to assess her, if you know what I mean.

For now, the plan is to take her back in 6 weeks for another check-up. I don't feel all of our questions have been answers and worries alleviated, but at least it's nothing serious right now and for that I'm very thankful!

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