Wednesday, November 7, 2012

First day done. (Grab a cup of tea, this got LONG).

Well, that was rough.  But honestly, I only thought about it at recess, lunch, and right after school.  That's the thing about teaching, your brain is focused on so many things going on in the classroom, you don't have a spare brain cell to think about anything else.  And I will say, it was nice to see my current and former students again.  They always make me feel like I'm loved and missed.  One of my former 6th graders came up after school and asked about Ryan, so I showed him a picture in my phone.  The reaction was much better than when I showed my 2nd graders a picture before I went out on leave for these three weeks, who all responded with a resounding "EWWWWW!" when they saw his breathing tube.  I think 2nd graders pretty much respond with EWWW to anything they are unfamiliar with, so I wasn't was a nice little teaching opportunity to explain about accepting others, even those who look a little different.   Of course, once I explained what the tube was and what it was for, they all thought he was "soooo cute". :)

So, now that we are back into the swing of things, we're asking for some big prayers and positive thoughts for our eye appointment tomorrow.  Dave and I will be taking him back up to CHLA in the afternoon to meet with Dr. Reiser and Dr. Lee and find out what we are going to do about the cataract in his right eye.  I'm really hopeful that they will have some options that will help him regain vision in that eye again.  I'll update tomorrow night with what we find out.

On the same note, a developmental center called me this week because Ryan will most likely qualify for some services, and she asked if I had any questions before we find out what he qualifies for in January. I asked for advice on how to help him develop his brain even though we aren't exactly sure how much he can see or hear at this point.  She called back today with some great news about a Braille Institute that will actually send someone out to see Ryan at home for FREE.  Love when I get good news like this.  I want him to have every opportunity to develop his brain now while he's still in such a formative state. 

(WARNING, this part will be long.  And I'm over-sharing.  You have been warned.)

I hadn't shared this here yet, because I was told not to worry about it, but of course since I've found out it's been on my mind and I figure there's no reason not to share and get some extra prayers going for a good outcome.  A few days before we were discharged, they decided to do one last head ultrasound, just as a formality because he hadn't had one since June.  We were incredibly lucky that he didn't have a brain bleed at all after he was born.  It really is a miracle because it's just so common in micropreemies to have some level of a bleed.  So, when they decided to do this ultrasound (his 4th), I didn't feel a reason to worry after 3 clear reports.  Well, on the day of discharge, the neonatologist reminded me of it and went over the results.  I had actually forgotten he'd had it done with all the excitement of going home.  He told us that there's still no bleeding, but (I hate that word) the doctor who read the images put a note in there that he saw mild hydrocephalus.  I actually had heard of this term through an awesome preemie support group I'm fortunate enough to be a part of.  One of the moms has a blog with lots of information about this condition because her twin miracles, also born at 25 weeks, are diagnosed with hydrocephalus (  Basically, the reason for the diagnosis was that the ventricles in Ryan's brain looked slightly enlarged as if there could be extra cerebral fluid in there.  Dr. Soliman was very insistent that he didn't think it was accurate to call it hydrocephalus (which means that there is extra pressure pushing excess fluid into the brain), he said, if anything, it could be hydrocephalus ex vacuo, which of course I googled the heck out of as soon as I got a moment alone with my laptop after he came home.  This concerned me even more because it meant that the gray/white matter in his brain wasn't growing enough, and the cerebral fluid was just filling in the empty spaces making the ventricles increase in size.  So, good news, the hydrocephalus isn't caused by too much pressure in his brain, but bad news, his brain isn't growing like it should.  Now before you all freak out like I did, I'll save you some time and worry by going over my list of reassuring facts.

Fact #1 - Dani has a big head.  (Sorry if you're reading this later on, honey!)  Throughout Ryan's NICU stay, as his head was growing and looking nice and round, people would comment on how round and perfect it was for a preemie and I would tell them that he has the exact same head as his sister.  So I never thought anything of it.  Dave has a big head, too.  He'll tell you that himself.  He HATES shopping for hats.

Fact #2 - Dr. Soliman truly did not seem concerned about this.  And he has ALWAYS been super blunt about everything that's happened with Ryan, to the point where I was starting to think that doctors just give you the worst case scenario every time they give you news so you can be pleasantly surprised when everything doesn't go as badly as expected.  So, yeah.

Fact #3 - After we came home, I read through ALL of Ryan's discharge papers.  Even the ones that were written for other doctors.  Did you know they write the parent version of the discharge papers at an 8th grade level?  That's what I was told, anyways.  The doctor version is much more medical, but it's amazing the terms and acronyms you figure out being in the NICU for 7 months.  Anyways, as I was reading I came across the reports on his previous head ultrasounds and I discovered that the one in June, which was the one that they showed me to compare the size of his ventricles with this current ultrasound, had a note that said it looked like his ventricles had shrunk.  That made me think that maybe this ultrasound just made it look like his ventricles were too big, when in fact they were just catching up from the previous ultrasound, and when you use the two images to compare it makes them look abnormally large.  This is what I am hoping at least. 

This combined with the fact that we apparently make kids with big heads, I'm hopeful that he'll just grow into his ventricles and it won't become a concern.  I'd be so interested to see what Dani's head would have shown in an ultrasound at the same age adjusted, but of course they don't just routinely give babies head ultrasounds.  So, we're keeping this on our list of prayers and trying our best to stimulate Ryan and get his brain to grow if that's what is causing the ex vacuo part of it.  I think being at home is already making a notable difference, and hopefully getting some developmental help early on if he's diagnosed with hearing loss/vision loss will help with that as well. 

If you read all of that, you rock.  Thanks for checking in on our little guy.  No matter what, we know he's going to be just fine. :)

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