Eek! An EEG!

Dear ones,

Over and over again, I put 'blog' on my daily to-do list and over and over again, it got pushed aside for things like laundry, grocery shopping, and dishes. I am learning slowly that my capacity to get things done really revolves around nap time and when Aaron's home. Moms and dads out there, that's normal, right?!?

We're been very busy this month with doctors' appointments, physical therapy, and new feeding regiments. But first, her EEG.

At our 9 month wellness check, we asked our pediatrician about Keppra, which is the medication Elle's been taking since she was in the NICU last spring for her (possible) seizures. To refresh your memory, when Elle was in the hospital, she would periodically have these troubling episodes where her oxygen level would plummet very abruptly and she would get very ashy. The doctors in Kansas told us that these were either seizures or evidence of premature brain activity (since her brain was so underdeveloped when she was born). She had several electroencephalograms (EEGs) to check her brain wave patterns and a consultation with a pediatric neurologist from a different hospital but ultimately, the data was inconclusive. Prolonged and untreated seizures can cause brain damage so Elle's care team decided to start her on seizure medication to be on the safe side. We have continued giving her a small dose (less than a milliliter) two times a day since her NICU discharge in March and the idea was that if no seizure activity presented itself, she would wean herself off the medication as she gained weight. I am happy to report that Elle has doubled her weight since March 26 (she was 5lbs, 11oz when we left Kansas City and at her last doctor's appointment she weighed in at 10lbs, 10oz!) so we were curious if we should begin the weaning process. Her pediatrician in Michigan was pleased with her weight gain over the summer but recommended that we hold off on stopping that particular medication until we had a neurologist to monitor Elle during that process, on the off-chance that she truly needed the medication. 

Fast forward to Virginia and our new pediatrician put us in touch with a doctor in Norfolk at the Children's Hospital of the King's Daughters (CHKD) and our first appointment was on September 18. Dr. L-M was immediately friendly and chatty, a lovely woman, and she shared that her daughter was a 30 week preemie. Now I know that there are many excellent doctors out there that are not parents of preemie babies and that they are still highly qualified and very good at their jobs, but I appreciate that she empathizes with where we've been and what we've been through. 

Dr. L-M scheduled an EEG for October 9 and at 6am that morning, I bundled Elle into the car and made the 55 minute drive to the hospital for our 7:30 appointment. The EEG itself took only 30 minutes but the whole process of checking in, filling out paperwork, getting weighed and measured, getting set up, and getting fed and changed stretched it into a two hour affair. (I am getting increasingly efficient at filling out paperwork with all of Elle's information and I was pretty proud of myself that the only thing I had to double-check was her social security number.) 

The two women that worked with us were very kind and gushed all over her because a) she is very cute and 2) she is even cuter when she is sleepy. The technician and I chatted about her history ("23 weeks, huh? *whistle*"), all the while she was wrapping Elle in a velcro burrito and getting all the wires sorted out. 

Elle hasn't noticed that she can't move her arms yet.

Elle was a very good patient at first and just sat up looking around and smiling. We were all surprised how compliant she was, but it was short-lived. Before long, she realized that her arms and legs were pinned and then......the waterworks. My darling, sweet, happy baby suddenly turned into a sobbing, screaming mess. When Elle gets upset, her nose and her eyebrows turn pink and her bottom lip starts quivering and jutting out. Just look at this face! The technician had clearly dealt with this kind of reaction before and kept talking to Elle in soothing tones. She worked very quickly to measure and mark Elle's head (notice the red dashes on her forehead) in order to place each electrode properly but, according to Elle, it wasn't fast enough. Elle kept trying to turn and look at me and I could see her pleading with me between tears. Help me, Mama! HELP ME! 

Oh, this sweet face.

We've been through a lot in her short life and I've watched Elle get poked and prodded, surrounded by wires and tubes and machines and I've certainly seen her upset before and usually I can handle it. But for some reason, after listening to her scream and cry like this, even knowing that she was just mad and not actually in any kind of pain, I teared up. When the technician noticed this, she laughed sweetly and said, "Well, aren't you just a tender heart?" and handed me some tissues. At the time, I really didn't understand why I was crying but in retrospect, I think it's because usually, I can just scoop her up and hold her and comfort her and this time I couldn't!  

As far as EEGs go, it's all about location, location, location.

The plan for her EEG was to get her all hooked up and then put on soothing music and turn down the lights so she would fall asleep. The EEG best tracks her brain activity when she is relaxed so the tech asked if I had brought a toy or a pacifier that would soothe her. Lucky for us, Elle loves her little fingers and as soon as her right hand was freed, she found her fingers and quieted down to a whimper. 

Panic mode.

Crisis averted.

 Her head was wrapped to avoid the temptation to pull off the probes and when I left the room, Elle was already starting to nod off. The tech said they don't generally mind getting babies her size all worked up because it tires them out and then they fall asleep pretty quickly when it's quiet. 

I wandered out of the EEG office and found a seat in the CHKD lobby. Looking up, I noticed  a lot of brightly-colored decorative glass shapes suspended from the ceiling that seemed to glow in the sunlight. It reminded me of one particular hallway at KU Med where Aaron and I would sit when we were taking a break from the NICU and drink coffee or make phone calls. As strange as it sounds, I had this pang of affection for that hallway and I think of how quiet and peaceful it was at times.

Right at the 30 minute mark, the smiling tech brought a dazed Elle out. She said Elle did great throughout the EEG and that she felt that the data was accurate. For the actual results, I would have to contact our doctor but at that point, the traumatic part was over. Elle's hair was a sticky, matted mess from the adhesive they used to keep the probes in place so she was given a hat and a blanket for her "good work". After a diaper change and a bottle, we packed up and headed home. She slept the entire way home.

Whew.

We heard from Dr. L-M last week and she said she looked over the results and felt confident that Elle's brain showed "normal activity levels". It's not often that we get to hear those words when anyone is talking about Elle's medical status so that was an immense relief! 

There are still many areas of concern that we need to work on (because, as far as Elle is concerned, Aaron and I have homework too!), but that is at least one area that we have seen progress - or at least not major setbacks, which for us, is progress! That's as much as I have energy for tonight but there is always more to talk about. Physical therapy, feeding, sleeping, being oxygen-free, visitors, life in Virginia...what would you like to hear about next?

Love,
Anya