I'm currently 36 weeks, 4 days pregnant with these twin girls. So far the pregnancy has gone extremely smoothly. I really can't complain at all, especially with it being a twin pregnancy. (I really can't complain, but I'm going to for just a couple minutes. Bear with me :) ). In the past week, I've gotten really uncomfortable and huge. I guess that's to be expected, but it's getting a little old not being able to bend over to pick something up. (And you don't realize how many times a day you bend over until you can no longer do it!) Luckily, the weather's been pretty nice up until this past week, and I've been able to cut it in flip flops for the majority of my pregnancy. Well, it was about 35 degrees the other night and I (actually) left the house, so I thought I should probably wear socks and shoes. I'm not even exaggerating when I say that it took me ten minutes, and a whole lot of grunting/sweating before I was able to get my socks and boots on. (Nice visual, huh?) That was when I really noticed how incredibly huge/uncomfortable I am, and how different a twin pregnancy is from a singleton pregnancy. (At least different from my previous pregnancy - Eddy was only 6 lbs, 5 oz when he was born at 40 weeks, so maybe I just had an easier go at it. But I remember walking for miles the week Eddy was born. Now I can barely walk to the doctor's office!)
But all in all, I have been extremely blessed this pregnancy. I have an ultrasound every week at this point and the girls are really active, my fluid levels are great, their heart rates are good, and they are growing at a very similar rate. They are small, but Eddy was small, and they are twins so that's to be expected. I was quite concerned about their size for the past several weeks, but last week my doctor assured me that they are growing fine, and he said he wasn't concerned about their weight at all. Last week, at 35 weeks, Baby A was measuring 4 lbs 6 oz, and Baby B was measuring 4 lbs 10 oz. (Ultrasound weight estimates are just that - estimates; so really we could be a pound more or less than those weights.) If these estimates are close to being accurate, that's 9 lbs of baby inside of me! When I think about this, I'm like, yes, I should be quite uncomfortable! But despite my discomfort, I am thrilled that they are still gestating and haven't been born yet. I'm shooting for anywhere from 37-38 weeks, and I can't believe how close that is! Months ago, I asked my doctor what the ideal time frame for twin pregnancy is, and he said 38 weeks. At the time I didn't think I would get close to this, because the average twin pregnancy is 35-36 weeks, but it looks like it could happen! I just want to keep them in there as long as possible to give them the best possible chance of not having to spend time in the NICU. (Especially because Olean doesn't have a NICU - I would have to go to Buffalo, and I don't want to be away from Eddy. It's already going to be so hard being away from him for a few days!)
Speaking of Eddy, he is doing well and is a sweetheart, as usual. People have been asking us how his seizure activity has been and if he's still seizure free. This is not an easy, or short answer, so here goes. At the end of September, Eddy had his first EEG since starting the ketogenic diet. Eddy started the diet at the end of May, and usually they want to do an EEG about every three months. This was just a short, one-hour EEG, not the overnight one that he's had many times. Ed and I were hopeful that his EEG would have improved even slightly, especially because he had been doing so well with seizure control. (Well, I was hopeful. Ed was assuming it had remained the same because we haven't seen huge strides in his development. It's definitely improving, but at an extremely slow rate.) I was quite nervous about the EEG because for about two weeks leading up to it, Eddy's sleep was incredibly bad. He tossed and turned literally all night long, and his arms came up constantly. It was almost like he had restless leg syndrome, but in his arms. The morning of his EEG I was researching myoclonic seizures (which are basically very quick seizures where muscles tense), and I was really hoping that Eddy's seizure type had not morphed into this. I read one website that stated that, "weaning barbiturates could provoke myoclonic seizures." Well, a week prior to his bad sleep starting (so the first week in September), we had decreased Eddy's phenobarbital (a barbiturate) again, as per our weaning schedule. As the wean becomes closer and closer to completion, Eddy's little body is going to have a more and more difficult time with withdrawal symptoms. His level as of a month ago was 10, which was down from 15 at his previous blood work reading a couple of months ago, and down from 38 from almost a year ago (when he was basically drugged out on phenobarbital constantly).
So, back to the EEG. We took Eddy to Rochester on September 30, and his EEG was at 12:30 pm. We were really nervous to get the results of the EEG, which we were going to hear at his appointment with his neurologist at 4:30 pm. Just as I had suspected (but hoped against), Eddy had some myoclonic seizure activity show up on the EEG. Two times during the forty minutes that Eddy had slept during the EEG, his arms came up (like what was happening so many times every night). One of these occurrences was normal wakening, but the other was "a single epileptic discharge." Eddy's neurologist said that "technically," this was a myoclonic seizure. Additionally, Eddy's brainwaves are still very abnormal. He still has slow waves all the time, especially on the left side of his brain, and when he's asleep, he has these abnormal high amplitude spikes. So, basically, not good news at all. His EEG is the same as it was last fall, when he was having tons of seizures. Although he only had one "epileptic discharge," his brain waves are still very abnormal. The epileptic activity is coming from one area in his brain, the same area that the 25-30 seizures that were caught on the EEG in May were coming from. This area is in the left-middle part of his brain, right near his communication center. This explains a lot about why Eddy has such a difficult time communicating and learning. He has been trying SO hard to talk lately, but he has such a difficult time making words. He still loves his youtube videos, and every time he watches one, we make him sign and say "movie." Sometimes it comes across very close to "movie," which is exciting. A lot of the time it's more like "mooo-vv", but he wasn't doing this a month and a half ago, so it's progress!
We are still very happy that Eddy hasn't had any "big" seizures since the beginning of June. It's tough to know if Eddy is even having seizures now, though. Luckily, Eddy's sleep has gotten much better in the past couple of weeks, and the number of times his arms come up has dwindled to almost none. His neurologist believes that the cause of the myoclonic activity is most likely due to the phenobarbital wean. We held off on decreasing his dose this month, because we want his body to be able to get used to the last decrease first. As much as we want him off of phenobarbital, we want to do it in a responsible and cautious way. I'd be curious to see his brain waves right now, because his sleep was at the absolute worst right around when he had his last EEG. Even though we didn't want to admit it, we both feared that the crazy sleep was due to seizure activity. Now that his sleep has improved tremendously (maybe his body has now gotten used to the last phenobarbital reduction?), I'm wondering if his brain waves are still as abnormal as they were a month ago.
So, as you can see, it's all very confusing. It's hard because we want to keep his "seizure free" countdown going because it was so encouraging for us, but due to "technicalities," I'm not so sure this would be acceptable. Darn you, epilepsy.
We are both so in love with that little boy, though. He is the sweetest, happiest kid around. He loves to give kisses and hugs, he has been laughing and smiling a lot, and he's just generally happy. He's also been extremely healthy for the past nine months, and I haven't had to give him Tylenol or an antibiotic once in the past nine months. This is pretty good for a two year old, especially one that was having three fevers a week a year ago! He takes tons of supplements/vitamins/minerals, and is on a very healthy organic diet. (Healthy other than the massive amounts of fat he consumes - but at least it's healthy fats - organic coconut oil, olive oil, and avocado oil.)
His development is improving, albeit slowly. But everything I hear/read says that as long as he's improving, things are good. If development stops or regresses, then we worry. His development is definitely moving forward. Sometimes it's hard to not want it to speed up and happen the way a "normal" toddler should develop, but Eddy has so many obstacles in his way that "normal" toddlers don't, and he's trucking along and making improvements every day. His therapists are happy with his improvements, and they all agree that he has been much more alert, aware, attentive, and engaged in the past couple of months than he ever has been before. His identification of objects and matching objects is always 80-90%. He definitely understands more than he is able to communicate, and right now, his communication is the area of most concern. We will just keep taking it one day at a time, though, and trust in God that He has the best possible plan in mind for Eddy.
In the mean time, we are just going to continue to enjoy our little boy and get ready to meet our new baby girls! Please pray for Eddy's development, and for healthy, happy baby girls! :)
