Archive for the ‘Seizures’ Category

Well, when I’d posted the last update, G wasn’t on CPAP yet and we weren’t for sure if she was going to go on it or not.

G is on CPAP now. I called the hospital around 8:30 night before last and asked if they’d done the blood gas levels and if so, how was she doing? The nurse told me that G’s CO2 level in her blood had actually increased. It had went from 85 clear up to 92. Needless to say, that was so not good.  The normal levels of CO2 in the blood are around 40. Click here for more information on CO2 in the blood (and in general if you want to read the whole thing).  The condition of having too much CO2 in the blood is called hypercapnia.

From Wikipedia

“In severe hypercapnia (generally PaCO2 greater than 10 kPa or 75 mmHg), symptomatology progresses to disorientation, panichyperventilationconvulsionsunconsciousness, and eventually death.”

(Okay, side note: Normally you do not use Wikipedia as a reference for things. However, if I list Wikipedia, its because I’ve done my best to verify the information that I’ve found, and have  linked Wikipedia because its generally written in terminology that is easier for most people to understand.)

They believe that the hypercapnia is caused by her hypoventilation. Hypoventilation, put simply, means that G doesn’t breathe in OR out deeply enough to maintain the correct levels of oxygen and carbon dioxide in her body.

When I talked with the doctor yesterday morning, what she told me was that she did not believe that – and I have to stop here and say that by the time I’ve actually written this sentence, I’ve tried about ten different times to put it into words – G will ever be able to ventilate correctly. She does not believe she is going to get better. Because all problems seem to link back to G’s brain, and you can’t fix the brain, G is… Well, she’s screwed. Plain and simple. She’s screwed.

She cannot come home without a solution to this problem. She cannot come home on a CPAP. She cannot come home on a high flow of oxygen.

When I asked the doctor where that left us in regards to her coming home, the doctor mentioned some ‘treatments’. One involving a medication that she did not seem keen on using. She did not mention the  name, so I can’t link it for you. The other was – if the problem with G’s breathing had anything to do with the same reason she was diagnosed with obstructive sleep apnea – putting a tracheal tube in.

G is not coming home any time soon. Our new goal is to have her out of the hospital by 3 months old. She’s 6 weeks old now.


You know, the medical stuff is always easy to write. Its, pardon the pun, something that can be done very clinically. You don’t have to get your emotions involved. Its after the explanations are out of the way that things get difficult.

Its that 6 o’clock in the morning when you’re sitting up, sleepily pumping, and don’t have anything to really distract you that’s hard.

Its that moment when you’re alone with your baby, looking down on her smoosh-face, and feeling the last vestiges of the hope and dreams that you’d so tentatively built up  crumble into dust.

Its knowing that because of some stupid genetic mutation, you will never know normal.

Its realizing that you should have known better than to procreate – given the fact that you’ve never even especially liked kids to begin with when you were younger. For that matter you still don’t really like any kids but your own.

Feeling the horror slowly slipping through your defenses, honestly believing that the only reason you’re still standing is because you don’t know how to fall down. Or maybe that you fell down a long time ago, and you’ve adjusted to viewing the world through sitting down on your bruised arse.

Trying to remind yourself – trying so very, very hard – that others have it worse than you. That others are dealing with things you couldn’t handle.

Finding out that what others are going through, or have gone through, doesn’t really help to give you strength any more.

Wishing well-meaning friends and family would understand that you hate hearing the word sorry. Sorry doesn’t help. Sorry doesn’t make anything better. Sorry does nothing but remind you of what a crappy situation you are in.

And on a purely frustrated, omg, I can’t freaking BELIEVE my bad luck – my camera died. Kaput. Given up the ghost. Gone to shutter heaven.

My camera. The one that I depend on to take great pictures of my kids with. Because while everyone else I know will have lots of years with their healthy, or nearly healthy kids, I have to face each day with the realization that I most likely won’t have all that time. That I have to take a ton of pictures because in the end that’s all I’ll have.

A great friend is giving me an old one to tide me over, but I’ve got to start putting back money to buy a new one immediately. My camera breaking is literally enough to put me in tears. I depend on it so much.

I’ve also got to buy a deep freeze to store G’s milk in – gotta start stashing on the expectation that eventually she WILL come home.

I’ve also got to buy a travel system for her too – because, dagnabbit, we are going to take walks, even if we have to take half the flipping hospital with us as support.

I want to curl up in a ball and cry. I really do. God, do I want to. I even started taking happy pills last night. Lexapro for the NICU mommy’s soul! I can’t curl up and cry though, because my kids need me. Also because I’m afraid at this point that if I did start crying, I wouldn’t stop. And, you know, crying for that long would be bloody inconvenient.









We got the results of the EEG back. They did find seizure activity. So they put G back on the EEG for 24 hour monitoring and then put her on Keppra. Later that same night, the neurologists decided to put her on phenobarbital too.

Hopefully today or Friday we will find out what type(s) of seizures G has, and if the medications have been effective in stopping them.

Here’s hoping!

My Introduction to Seizures

The Serious

In persons with PVNH (periventricular nodular heterotopia), depending on how widespread the malformation is, there is between an 80 and 88 percent chance that you will develop seizures. Specifically, that you have that much of a chance for epilepsy, though the reading that I’ve been doing does also make it sound like you could just develop regular seizures instead of epilepsy, so I’m not 100 percent clear.

What I am clear on is that in most cases, the seizures don’t present until teenage years. That the longer you go without having a single seizure, the greater the chance that you will not have them.

I have never had a seizure.

L has never had a seizure.

G has had two in two days that we are absolutely sure of.

They did an EEG on her for about an hour yesterday, immediately following her second seizure. If she did not have another one in that time, the NNP is going to look at having a long-term study done. That’s our first step.

Our next step is to figure out what type of seizures G is having.

-My questions are: Is it possible to have more than one type of seizure?  Because if so, I think I’m seeing more than one type in G.  How exactly do seizures affect the body?

See, I’ve noticed from very early on that G had what they call nystagmus, that her eyes dart rapidly  to one side repeatedly. I thought it was odd, but what do I know? We also knew that she had what they termed at first to be ‘gross motor jitters’.  One day I saw the two of them happen together. When I mentioned it to the nurses, they did a head ultrasound, which revealed no major abnormalities. Well, here’s a tip: Head ultrasounds suck. Get an MRI done. Also, since seizures are electrical activity, you really need an EEG done because it might not show up on a static picture.

I would periodically bring it up to people. That I still thought she was having seizures. That her behavior wasn’t normal. I felt very much like I got the brush off. Like “Oh, isn’t that cute…the mommy thinks she knows something.” You know? Majorly freaking irritating. They would just tell me to try to restrain her during one and if I could restrain her, it wasn’t a seizure.

Okay, seriously? She’s a newborn. Even the doctors admit that seizures in infants can manifest in itty-bitty ways!!

Well, night before last (April 12), I was holding G in a modified Kangaroo Carry, and talking to K. We noticed G’s eyes were starting to do the nystagmus thing. I told him the next time she did it that he should try to get a video of it on his phone. He was attempting to do that, but it was too dark in the room, and suddenly G started spasming. Since I was already holding her cradled against me, I tried to restrain her, but the jerking continued with her arms and legs spasming like she was trying to curl up in a ball and then pushing out of it.  It only lasted like 40 seconds total and then she seemed to be fine but I did notice her breathing was a little hitchy. Sorry, that’s the only way I can think to describe it. I alerted the nurse when she came back in. I didn’t see the point in making a big deal about it since it was already over. She promised she’d pass the information along.

I will admit to feeling some vindication over the fact that G had had an obvious seizure, even if no one else but K and I had noticed it. It just confirmed that I was right about what had been going on. I wasn’t imagining things. She was having seizures.

Now, the next day, I’m talking with the nurse, and I noticed G’s eyes started to dart again. I pointed it out to the nurse. I didn’t expect G to seize, because I’ve seen her eyes do that without any obvious seizure taking place before. What I said to the nurse was basically “Look, this is what her eyes were doing last night before she seized.” So the nurse took a look, and was getting ready to write it off as normal behavior when it happened. G started jerking again. The nurse swiftly uncovered her, and just watched. She confirmed that it was seizure activity. (Side note: Instead of all 4 limbs, this was only on G’s right side this time.)

I couldn’t believe it! Finally someone else had seen it. A member of the medical team. Thank God!!

Twenty minutes later, they were doing an EEG. We still haven’t got the results of that yet.

The light hearted…

So when K and I went back after dinner to visit G, we both started laughing as soon as we saw her. She was in full EEG regalia, and wrapped up in a super tight swaddle that started at her jawline and went to her ankles. She also was not exactly happy about the whole thing. She wasn’t crying, mind you, but she was very… indignant looking. Of course, looking indignant while wrapped up in your best impression of a baby burrito… Well, you know. Sometimes you can’t help but snicker!

I didn’t get a picture of her swaddled, but  I got some of her right before her nightly weigh-in.


Questions, Answers, and Links

What is a seizure?  “Seizures are symptoms of a brain problem. They happen because of sudden, abnormal electrical activity in the brain.”

How many ‘types’ of seizures are there? “Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity on both sides of the brain.”

Is it possible to have more than one type? “ People may experience just one type or more than one. The kind of seizure a person has depends on which part and how much of the brain is affected by the electrical disturbance that produces seizures.”

How exactly do seizures affect the body? That depends on what type of seizure you are having. Click on each name and it will take you to the website I referenced to give you more information about the particular types of seizures.

Generalized Seizures:

Absence (petit mal), Atypical Absence, Myoclonic, Atonic, Tonic, Clonic, Tonic-Clonic (grand mal)

Focal / Partial Seizures:

Simple Partial, Complex Partial, Secondarily Generalized

What do I do if she has one? This is taken directly from an article on webmd about what to do if your child has a seizure. It matches up with what the NICU doctors told me.

  • Get the child away from anything that could cause harm — out of the tub, away from stoves or heaters, away from tables and shelves where items may fall off and cause an injury.
  • Roll the child on his or her side, as a seizure victim may vomit and could choke if lying on his or her back.
  • If you can, tilt the child’s chin forward, CPR-style, to help open the breathing passage.
  • Do not put anything in the child’s mouth. A tongue cannot be swallowed; this is a myth. If you put your hand in the child’s mouth, you may end up being bitten, because a seizure victim will often clamp down uncontrollably. A spoon or other object thrust into the child’s mouth will not help breathing, but may result in injury to the mouth and teeth.