Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, June 25, 2009

Brain Trust

For a couple of months now Eliza's face has been a bit skewed to one side when she talks, laughs or even yawns. It has been suggested to me that this is (a) a normal toddler habit to make faces (b) an attempt to stabilize her facial muscles to help her articulation (c) a figment of my imagination or (d) (my favorite) just another example of how I need to "lighten up and not worry about little things." My inquiries as to whether this could be related to Eliza's seeming inability to chew were met with silence and rolling of eyes.

Since none of the answers from those "in the know" seemed quite right to me, I searched out a pediatric neurologist and had him examine Eliza this week. He was lovely, kind and supportive.

And very certain that answers (a) through (d) were, shall we say, bullshit (my word, not his).

Just to put this in perspective, here is a photo of Eliza speaking:



Figment of my imagination? I think not.

It seems this facial asymmetry could be caused by one a few problems, none of which is something you want in your household. So the new short list of choices is (in my layman's terms):

(a) "Extreme Preemie Brain." For those of you who have been following along for a while, I posted this diagram a while back:

:





My personal belief (and that of quite a few people in the post-NICU business) is that you just can't take one of these partially developed 26 week brains that is meant to be happily floating in a dark, warm pool of amniotic fluid, drag it out into the glaring light of day in a NICU with all hell breaking loose, with limited regard for pain and sensory management and hope that this brain will develop normally. So, this problem of Eliza's could be just one more gift of extreme prematurity with no particular explanation or solution.

(b) Something like Periventricular Leukomalacia (PVL) that was not seen in Eliza's NICU head ultra sounds. It is not unheard of for this to only be diagnosed later in a brain MRI. For your reading pleasure, you can go here: http://emedicine.medscape.com/article/975728-overview

(c) A brain cyst/lesion/tumor/etc.

(d) Who the hell knows

Where does this leave us? Well first Eliza will have a brain MRI. Because Eliza will need full sedation for this she cannot be sick in the preceding two weeks. So for those of you who plan on visiting, you will not be welcome here if you are sick, have been sick, been near sick people or refuse to wash your hands and remove your shoes when you come in our apartment.

Hopefully the MRI will give us some guidance as to what the problem is. From there, well who knows. Eliza and I will cross that bridge when we come to it, just like we have many times before.

Oh, and the next person who tells me to lighten up about this "prematurity thing" may not be all too happy with my reaction.

10 comments:

Cora said...

There's really nothing "light" at all about this "prematurity thing", is there? It just sucks.

I'm so sorry that you've had to add this to your list of things to tackle. I agree 100%, that the photo of her talking isn't normal. In fact, she looks very similar to a stroke patient.

I hope that you get this figured out quickly. Your options are so scary. Let us know if we can help with anything.

A,L, & K said...

I am shocked and disappointed that people could blow you, and Eliza, and this pattern off. I am not even in NYC and I had noticed the skew in recent pictures! I had even gone back to make sure they were taken at different times and so it was not just a camera shutter moment, yknow? I am soooooo glad you are advocating for her to get more info and I hope the mri goes as well as possible. You ROCK and i hope the narrow-minded people in Eliza's world see the light.

MamáChanga said...

It really ticks me off when "those in the know" dismiss and disregard the concerns of the person that spends the MOST amount of time with our children. I'm glad the pediatric neurologist listened, was lovely, kind AND supportive---don't we wish EVERYONE could be that way?! Sometimes I think we need to start conversations with, "Okay, I have something to say, don't interrupt me, just LISTEN!"

Wherever this new road leads you Anne, I know you will be well prepared because that's the kind of mom you are, the kind of mom Eliza needs. And just in case no one has told you in awhile, YOU'RE AWESOME!! Be good to yourself!

Prayers, Hugs & Blessings!

Anne, Eliza Grace's mom said...

I cannot tell you how many times in the past few weeks I have said "doesn't Eliza talk sometimes like she has had a stroke?" And everyone has insisted, absolutely insisted, that I am nuts and that "all kids do this." Uh, no.

The problem has been progessive over the past 6 weeks I would say. The earliest I noticed it was at most 8 to 10 weeks ago. Abby, who does not think I am nuts, at least on this discreet issue, has noticed it got worse from one visit to the next. "Dr. Google" and I can't find anything that says effects of a stroke are progressive, rather they are sort of there from the time of the event and if anything, they lessen.

If anyone has any ideas on this, feel free to post them, since as we know I am not a doctor, I just play one in real life.

Robin Elizabeth said...

Oh Anne, I'm sorry you have to deal with this. It just never ends.

Tiffany said...

I am so sorry you have to go through this. At least you have someone looking into it! I know with Chloe, everyone always thinks I'm just worried that there's something wrong because she was so preemie. But, I know that there's something more with her than just being a 29 weeker, and I have been lucky to have Dr.'s that are very willing to look at all the sides.

Chloe had a MRI back in January. I honestly think it was harder on us than it was on her!

Amber said...

Oh my goodness...why is like pulling teeth getting answers...or even someone to listen to us!!!
I hope you get some answers soon....keep her well. :0)

*my word verification is: hater. I kinda feel like one right now* :0)

23wktwinsmommy said...

Serena has the same thing...but has always had an assymetric smile (see pictures on my blog). We've all noticed it, but no one has really said we should do anything about it. After reading this I am definitely going to ask the developmental pedi about it at our NICU follow-up appointment and see if going back to the neurologist to address this would be beneficial.

Thanks and please keep us updated.

23wktwinsmommy said...

Hi Anne,

I didn't have an MRI done for either Serena or Edwin due to their extremely significant BPD (they only came off O2 completely this past year.) Serena's "paralyzed" left side of mouth (noticeable in her "teeth showing" smiles) has been evident since she started smiling. It was suggested by the EI team that it was from her left paralyzed vocal cord, and perhaps there was some small nerve damage to that facial muscle. It's not very noticeable and she is a terrific speaker and eater so we never really thought much of it. But she did have a "unidentified" area that showed up on her head ultrasounds, but given her development we never explored it further. I am going to mention it to the developmental pedi and will appreciate any feedback you get reagrding Eliza. I hope everything turns out ok!

Laura in L.A. said...

Praying for you and Eliza Grace. I am so sorry that you are going through this.

Love, Laura