Day 2/ Night 2 in the PEMU

Another day down in the PEMU. Some things happened (like X-rays), and some didn't (like naps). Sadie screamed another day away, and then finally fell asleep an hour before daddy came. I've never needed a break from her so badly before!! And I did get a break once she woke up and Brian was there to watch her.

I went down to the library at the hospital and checked out two books. The first one is called The Out-of-Sync Child and claims it's the "parents' bible to Sensory Processing Disorder. I haven't started reading this yet, but I hope it has some ideas on how to help Sadie cope with her environment. The other book I checked out is called Teaching Motor Skills to Children with Cerebral Palsey. I might actually end up purchasing this book. It is really good and seems like the kind of thing we will want to continually reference as Sadie progresses. I just started reading this and it's like they KNOW my child, which makes me feel like the advice and exercises they recommend are credible. I'm excited about this book.

X-RAYS?! WHAAAA?!! That's the reaction I had. Sometimes it's like people at the hospital assume you can read their minds, so they just drop information in conversation like it's no big deal. Not much gets by me. I asked. The nurse told me some doctor I'd never heard of (let alone met) requested X-rays of Sadie's hips. I was sure they must have gotten her mixed up with someone else...but then she came back and told me it was actually Dr. Rabin (he's the rehabilitation therapist we saw the first night we were there). And actually, I was glad they were going to X-ray her hips, because I have hip issues that are hereditary, and her condition makes her prone to hip issues, plus genetics do too. The outcome was that her left hip is a little out of socket, so we are supposed to go see Dr. Rabin in a couple of weeks to talk about what to do about this. Because of my history they can't tell yet if Sadie's hip displasia is congenital or developmental, but I'm glad they're finding it now and not when she's learning how to walk.

Our night was rough, but that's to be expected with sleeping with the lights on. Sadie fell asleep fairly quickly once she had her medicine and her melatonin. Sadie's getting good at falling asleep nursing, but then letting go and not needing to nurse the entire time she's asleep, so I was able to sit there for a while with her while Brian and I hung out a little. And I met our night nurse. It was almost 7:30 and I mentioned to her that when Sadie wakes up in the middle of the night she can check her vitals (they have to put this blood pressure cuff on her and it squeezes and she hates it) and give her her (new) medicine, and more melatonin. This worked SO WELL the night before. What I didn't realize was that the night before we had a competent nurse. So, Sadie and I laid down around 8:00 and she slept soundly, while I laid there and listened to the announcement that visiting was over, then listened to people saying goodbye and leaving, then listened to children protest to shots/going to bed/etc, then listened to babies crying...finally I turned on some white noise. But, our nurse came in around 9:00 and listened to Sadie's heart and lungs and tummy, and we talked again about how I'd call her when Sadie wakes up (between midnight and 1) and we can do meds and melatonin. 1:00 came around, Sadie woke up, and I held up my side of the bargain. However, nurse "doesn't-get-it" had to call the doctor to approve the melatonin (even though we gave it to her the night before AND I told her twice I'd like to give it to her again), then wait for the pharmacy to send it up. It took almost 2 hours, and by the time we gave it to her we had lost our window of opportunity to go back to sleep peacefully. I ended up having to move to the little couch and nurse her to sleep, then bring her back to bed. Normally, this wouldn't be a big deal, but 1. we were sleeping with the lights on and I was REALLY tired and cranky, and 2. she was all hooked up and moving her takes 2.5 hands (but it's easier with 3). Needless to say, I'm super mom and was eventually successful at not only putting her back to sleep, but transferring her to bed without her waking up. Whew!

Morning came too soon, and people started coming in and out of the room hustling and bustling about. Before we realized, there were 2 ladies in there removing Sadie's "headdress"!!! They never told me, but I figured it was a pretty fair assumption that we were going home! Soon after Dr. Williams came in to talk to us. I love what he said, "we treat seizures, and since she's not having seizures and there's no EEG seizure activity, there's no reason for her to be treated." I think we probably knew this 3 or 4 months ago...but the medical world needs real, tangible evidence. Now we have that evidence and we can go home and start weaning off the phenobarb. It's going to take 6 weeks to wean Sadie down because it's important her body doesn't go into shock or withdrawals from being on it for almost 7 months, but then we'll be done!! Dr. Williams was careful to tell me that Sadie still shows a lot of tendencies for seizure activity and don't be surprised if they show up later down the road, but he never promised it will or won't happen, just that we'll cross that bridge if we have to.

So, we go home victorious. To God be the GLORY for my baby's health and well-being. And may we never have to sleep with the lights on again!!

This was a test where they flash a strobe light into Sadie's eyes to see if it'll induce a seizure.

Cozied up with my babe.

This is Sadie sleeping, you can see the video of her in the background. We were always being watched, it was sort of creepy.

Taking the EEG off was a little easier than putting it on!

Sadie flirting with Dr. Williams (they were saying goodbye)

Day 1/Night 1 in the PEMU

PEMU stands for Pediatric Epilepsy Monitoring Unit, and boy do I wish we didn't have to be here!! Sadie is being hooked up to an EEG monitoring system to determine her seizure activity in hopes that we can be med-free...at least for seizures!

We got here about 7:15 Monday morning (on 8-9-10!) after Sadie had pretty much woken up around 2 and never really went back to sleep (maybe a short nap in the bouncy seat). So, we were all tired and cranky to begin with. But people at the Children's Hospital (PCH) are so nice, and they welcomed us no matter how whiney or cryee we were...mostly Sadie was this. Luckily, we had brought the bouncy chair with us, so Sadie was able to bounce for most of the morning, when they weren't squeezing her, and listening to her, and undressing her and measuring her. However, once they put on the EEG electrodes, we were told the bouncy chair 1. was too much movement on her head where the electrodes are, and 2. was too much motion and interfered with the EEG reading. So, we had to give it up cold turkey.

We met a new neurologist, Dr. Williams, the one recommended to us by our pediatrician (everybody LOVES our pediatrician, by the way...I think we hit the jackpot with her!). In the 20 minutes we talked with him, we probably got more useful information than we've EVER gotten from Dr. Jarrar in all our visits combined!! He said he was going to go ahead and make the diagnosis for cerebral palsy for Sadie (Dr. Jarrar simply told us they can't diagnose until kids are 2, but she'll have it for sure), and he really made sure I knew what that diagnosis means. Then he went the extra mile and called the library here at the hospital and had them put together a packet of information (complete with an available book list) about CP for us, and told us to check out the CP You Tube channel. When I mentioned that we don't communicate well with Dr. Jarrar and he's been recommended to us as a neurologist we might want to switch to, he told us that if it's determined that she's not having seizures, he'll give us a schedule to wean her off the phenobarb, then we won't really have to see neurology anymore unless she starts having seizures again at a later date...which is realistically possible. Then he mentioned that her muscles are tighter on one side more than the other and wanted us to talk to a habilitation therapist (I think Dr. Jarrar mentioned this therapist, however, all she said was we needed to see him...not how, why, or who he was). This therapist, Dr. Rabin, came in later and mentioned that we could get a brace for Sadie's trunk to help her with sitting. He also said there's medicine to help with muscle tone that can help her have more control over her limbs (which would be nice as she's starting to sort of bat at things and reach for them). We're going to try this medicine while we're here in the hospital because one of the side effects is that it lowers her threshold for seizures, Dr. Rabin thought since she's being monitored right now it'd be a safe place to experiment. (the other side effect he mentioned was sedation...which I don't like, but on a low dose it might just be enough to make her tolerable)

Once the electrodes were put on Sadie's head, which she HATES, she continued to scream for another 3 hours!!! We had no bouncy chair, so I was stuck just letting her tire herself out...which you would think would be short seeing as how she was short on sleep. Nope, not my daughter!! Unfortunately, we are also being video monitored, so not only could everybody in the hall hear her screaming, but most of the staff could also SEE how miserable we were. However, this turned out to be a blessing once she finally fell asleep because they knew how long and miserable the going to sleep process was, and they knew not to disturb us. So, we had 3 good hours of napping undisturbed. Luckily, my dad came during this time and I was able to hand Sadie off to him and get a break. There's no way I would have been able to sit there for that long with her! And I was able to lay down for a few minutes as well. It's hard to move around with her anywhere because she's all wired in and whenever you go anywhere with her, you also have to take this "battery pack" pouch and make sure none of her cords are tangled. It's not easy if you're by yourself.

Later in the evening, Brian came and we were able to have dinner and get Sadie her medicine. She luckily went to sleep pretty quickly. It was funny because her bedtime is right about when the nurse shift changes, so our new nurse came in to check her vitals and stuff and I was like, "she's down for the night, sorry dude." So, we agreed I'd call him when she woke up, which happened to be about 1:00am. We had also talked to the nurse about giving her a second dose of melatonin at this wake up juncture (because she has a tendency to wake up and NOT go back to sleep for 3-4 hours), so we were able to give her more of that around 1:30 and in an hour she was back asleep...until 8!!

Sleeping was rough on me. When we first checked in to the hospital they had a crib in the room for her and told me the couch folds out for me to sleep on. I very politely told them there's NO WAY she's gonna sleep in the crib without me...as much as I'd like her to. So, they brought in a bed for us to lay in. It wasn't a bad size, we both fit in it pretty well, so I think that helped her sleep as well. But because they have to video her, we had to leave the lights on all night...OYE! Okay, for one, it was a little creepy to be videotaped sleeping (even though I bet we were pretty cute all cuddled up together), but we layed down about 8:00pm, and I woke up at 9:30 SURE it was probably 2 in the morning already. I couldn't believe it'd only been about an hour and a half!!! Sleeping with the lights on is ROUGH, like prisoner torture rough. Plus, to top it off, the night shift wasn't real quiet out in the hall at about 3:30, and starting at about 7am, they started coming in our room and checking things.

This morning, Sadie has been in THE BEST mood!! Sleeping really helps...if only I had had restful sleep as well, but I think we know what to do now at home. Dr. Williams just came in and told us he saw NO SEIZURES yesterday!! woo-hoo!! He said I almost fooled him when I was bouncing her (during her 3 hours of SCREAMING), but then he looked at the video and saw why it looked like seizures (see? good thing they do the video). He said of course she is still at a 70%-90% risk of developing seizures in the future because of the brain damage she suffered, but that if he sees the same thing today he'll let us go home tomorrow, with a schedule to wean her off the phenobarb. This is the best news we've had since we were discharged from hospice!

So, we're here for Day 2 in the PEMU. I'm going to try to get down to the library, and try not to be too bored! Keep praying for us!

This is Geri, she's done all of Sadie's EEGs, even the ones in the NICU. She's really nice.

Daddy always makes it better with his silly noises and his kisses.

These are the electrodes Geri put on her head, 25 of them. Each spot scrubbed, dabbed, and "cemented."

Almost done and ready for the gauze hat!

Geri working on Sadie's head. She is VERY good at what she does. I'm always amazed.

Sadie's ski mask...or we like to call it, her "abominable snowman costume!"

Finally asleep with grandpa after 3 hours of screaming.

So happy after a nap!

Getting ready to go to bed!

Tired baby. She was asleep within minutes of this picture!

What do you know about Epilepsy?

Most people have heard of epilepsy, but how many REALLY understand what it is? Well, let me help you know some more about it, and how it relates to Sadie and our situation.

Epilepsy, or seizure disorder, is diagnosed when an individual has had 2 or more seizures…ever. Often the cause of epilepsy in an individual is unknown, in our case, it’s due to brain injury. Others can have hereditary epilepsy. A seizure is a sudden jolt of electricity in a person’s brain. Some seizures are hardly noticed, while others will completely disable a person for a short time. People who have had one seizure are more likely to have another if they have experienced some kind of brain injury. One way for a doctor to tell if one might have another seizure, or develop epilepsy, is to do an EEG (electroencephalogram: electro= electricity, encephalo= brain, gram= chart/reading). So, when you hear me talk about Sadie’s EEG, you know that it’s a way for her neurologist to look at her brain waves to determine the likelihood of continued seizure activity. In the NICU (neonatal/newborn intensive care unit), Sadie’s EEG showed continuous seizure activity, even when medicated with Phenobarbital and Keppra. This is why Sadie has continued her dose of Phenobarb upon coming home. However, her EEG done at 10.5 weeks showed no seizures, but a tendency for them. This probably means that Sadie’s brain waves on her EEG showed patterns that a person who isn’t prone to epilepsy wouldn’t have. According to research done by epilepsy.com, .5%-2% of people will develop some kind of epilepsy during their lifetime, about 2.7 million Americans have been treated for epilepsy in the last 5 years, and it occurs more often in men than in women.

The most common to develop epilepsy are children, and often in the first year of their life. How scary is that?! To bring your baby home, only to witness a seizure in him/her months later? I am so thankful we have never witness Sadie having a seizure. But in reality, anybody can develop epilepsy. Up to 70% of children with epilepsy can find relief in medication, however, they often experience side effects of these medications. I also read on epilepsy.com that about 80% of people treated for seizures with medication will be seizure free for at least 2 years, many never have another seizure again. This, in children, is referred to as “growing out of seizures.” Of course, this is more likely to happen when there hasn’t been an assault to the brain and if there has been a normal EEG…that’s 2 strikes against Sadie. However there’s still time, she’s only 4 months old!! Obviously the longer one goes without a seizure, the more likely it is they will be seizure-free in their lifetime. For about 30% of these people, being seizure free means continually taking medication to control their seizures. Epilepsy.com says that many neurologists will consider ending medication once a person has been seizure free for 1-2 years, however, many moms of babies with HIE say their babies are weaned down from the phenobarb between 4 and 6 months. This is what I’m pushing for.

Even if it is confirmed that Sadie has epilepsy, it shouldn’t effect her life expectancy. In general, seizures are hardly ever fatal. What may cause death in someone with epilepsy are grand-mal/tonic-clonic seizures for more than 30 minutes, choking and suffocating on vomit or water (if swimming or bathing), or going unconscious/falling somewhere that could be life threatening (ie. while driving, on a train or subway platform, or even walking along a busy street). Sadly, epilepsy is one of the most common neurological disorders among us, and it doesn’t fit in a nice neat package, it has a wide range of effects. Recently, more awareness has been created for epilepsy, and words like “seizure” generate less fear in our generation than they did long ago. Long ago, people thought of epilepsy as a curse from the gods, or that they had the power of prophesy. Many who would hunt witches looked for signs of seizures when identifying one. Later, those with epilepsy were thought to be psychologically disturbed and spent their lives in mental hospitals. But people with seizures were kept separate because people thought seizures were contagious. They also weren’t permitted to marry, have children, and some were even made sterile! Luckily, epilepsy continues to be studied and our knowledge of brain function has increased greatly.

People with epilepsy are often not cognitively challenged. Unless the seizures accompany a primary disorder that effects cognitive function (like HIE?), epilepsy will not cause a person to be smarter or dumber. Here is a list of geniuses that you may have heard of that have all been diagnosed with epilepsy on wikipedia. Here is another one sited on epilepsy.com of famous people with epilepsy. Epilepsy should not be a barrier to success. Although sometimes lifestyles need to be altered depending on the severity of the seizures. The biggest component of living a successful life with epilepsy (besides good medical care) is attitude. Parents of children with seizures should remember that it’s no different than other medical problems like diabetes or asthma, and that kids’ accomplishments need to be praised just like any child so that they can build good self-esteem. No matter what Sadie's outcome is with seizures or other disabilities, it is important to us that she 1. knows that she is loved, 2. knows that we will support her in anything she wants to do, and 3. we will always push her to do her best without comparing that to someone else's best.

There's a ton more information out there about types of seizures, EEGs, treatment of epilepsy, and seizure medications. I encourage you to do some more research, educate yourself, and keep reading about Sadie to see how her seizure disorder plays out.