Let's start from the very beginning.

4/28/13 - As i'm starting this thing 4 months into the journey of a baby with epilepsy I have a million memories and thoughts that I want to write about, so I apologize in advance if the next few posts are all over the place and disorganized. I guess I will start with day one and go from there adding things as I remember them. April 27th 2012 I found out I was pregnant. My pregnancy was flawless, I kid you not. I had one spout of nausea and towards the end dealt with pregnancy induced carpal tunnel, but I actually enjoyed being pregnant, I felt great the whole time. I stayed very active and was working until the day before I had my baby. Honestly, if I could guarantee another pregnancy just like that one, I could do it again right now. December 21, 2012 6:51pm Abigail Kate Petersen was born at a whopping 7lbs 13oz and 18.8 inches long. The poor girl was facing up so the delivery was not as smooth as the pregnancy and she was so swollen all over, but still so dang cute! There was actually a point in the delivery that I had been pushing for so long I made us stop and I fell asleep. I was exhausted! But it was all so worth it. I stayed that night in the hospital and then went home about 7pm the next day. (Most people stay 2 nights in the hospital but my husband was antsy to get out of there and I had an 8 yr old (almost 9) waiting anxiously at home with my mom, so I got out early.) The stay in the hospital was nice enough, I got served steak dinner! But, back to Abi. So that night in the hospital the nurses took real good care of Abi and me, coming in and making sure I was comfortable and taking Abi out so that I could get some sleep and all that jazz. I noticed that Abi, at times, would wake herself up by choking and told the nurses about it who mentioned it to the doctor who concluded that because she was so swollen, so was her throat and it wasn't anything to worry about. (Apparently he had seen it several times before). So we went home and enjoyed being new parents (new for me, new again for her daddy). We quickly noticed a quirky behavior that Abi did every now and then, and thought it was so funky! We thought she would get so mad she would turn her head to one side, and her body way over to the opposite side, so she was twisting, and would go really stiff. Her eyes went way over to the side that her head turned and kinda shake. We actually laughed about it a few time because it was so odd..little did we know at the time this was not just a newborn quirk. She also at times would get so mad and just go stiff and red and would stop breathing and her tiny little tongue would barely be sticking out of her perfect little bow-shaped mouth -- which was shut, and she would discontinue breathing. She didn't go purple or anything - just bright red - so we weren't too alarmed, but nobody liked that one at all from the the beginning. We would try to blow in her face to try to get her to breathe in, but she was completely unresponsive to all of our attempts. She would just come back to on her own. As the days continued I started disliking this quirk a little more, especially the eye movement, I wanted her to stop that because it honestly looked like she was going to strain them so hard she was gonna pop a blood vessel or something! That was the first thing that I noticed and didn't like. Then I started to notice that this wasn't something that she did after she got mad, but indeed was something that preceded the anger, that whatever was happening was actually making her mad. My mom had mentioned seizures but we didn't think they were because they were only happening when she was awake, or so we thought. Then we soon realized that these were happening in her sleep as well, but would wake her up, so that's where we got tricked. Jaren (my husband, her father) looked a little more into baby seizures via google and youtube and all the signs and symptoms pointed to seizures. Tensions were getting higher in my house as we weren't sure what to do. Mom and Dad were pushing going to the Emergency room, which was obvious, but it was Christmas Eve, I didn't want to go to the hospital on Christmas Eve! The next day, Christmas Day, after opening presents, and hanging out at the house for a bit the seizures seemed to be getting worse and more consistent only resulting in higher tensions. After several attempts to taking a video of the episodes to show the doctors in case she wasn't going to perform for them, we took her into the Emergency Room in St. George Utah. 4 days old and I'm at back at the hospital with my baby. That drive the St. George was the longest hour and a half in my life. Her seizures were happening about once every 20 minutes or so and her breathing changed during the seizure, so while we were driving I could hear every time she had an episode and every time it got harder to hear. I eventually just had to fall asleep in the car. We got admitted to the NICU in St. George and spent about a week there. When we first got there they ran a bunch of tests and found out that she was severely dehydrated, her sodium levels were through the roof and that was probably what was causing the seizures. See, Abi and I had a really hard time nursing, and it was a complete struggle for both of us. She didn't want to wake up (seizures are exhausting to the brain and body) and when she was awake she was just screaming at the breast and I couldn't for the life of me get her to latch, then she'd fall asleep again. I was able to get her to latch for very short bits at a time and figured that must be all she needs. Newborns are tiny and they don't eat a lot at first. And at this time we thought the dehydration was causing the seizures-so we thought, she couldn't eat because she was having these seizures, but not eating caused her to be dehydrated which caused her to have seizures which caused her to not be able to eat! So, we thought we figured it out and were on our way to fixing it, but it would take a few days for them to level out her hydration levels. They had to bring the sodium levels down slowly or it would cause further problems. After her hydration levels were regulated and she was still having these seizures we were then at a loss as to what was causing them, but still looking! An MRI, spinal tap, and multiple blood and urine tests later there was nothing - no reasons AT ALL that she should be having these seizures. So bittersweet. So frustrating that there were no answers out there, but good to know there was nothing substantially wrong with her. And we were assured that these seizures weren't hurting her, just being pesky, made things a little bit easier to handle, but I still wanted this to stop! So we put her on phenobarbital and sent her home (after a few days of monitoring). We came home Jan 2nd (I believe). A few days later those pesky seizures were starting to show up again, so I called and we just increased her dose of Phenobarbital. Jan 8 I went back into St. George to meet with the geneticist to get some results of previously taken tests, get some more tests, and an overall check-up. The next day Abi started having seizures every 5 minutes. She was completely content the whole time, but every 5 minutes she would crane her head and body, I called the NICU and was told to come back in. So about a week later, we were back in the NICU for more. We took more blood and urine for more tests, did another spinal tap, and the works. This time we were in the NICU until I believe Jan 14th. Maybe 17th - they ended up adding 2 new medicines to her list - Keppra and Topamax (topomax?).  Even with the 3 medicines she was still having episodes! Not as often, or as severe it seemed, but they were still there. We pinpointed the seizures to happen right as she was about to fall asleep. Literally as she was about to fully relax into a deep sleep she would have a seizure and it would wake her up and she would just scream for hours until I guess she got tired enough to 'beat the seizure' and finally find some sleep. Although the NICU in St. George was working hand in hand and in real time with Primary Children's hospital in Salt Lake, we still thought it a good idea to actually get some face time up there. So we got an appt with a neurologist on the 'fast track' to the seizure clinic - So we needed to get seen by her and get her sign off that we should be admitted, which we did. They basically said that the NICU in St. George was very thorough and ran all the tests that they would have run there and there wasn't much more to do except the one in a million chance tests that take a long time for the results to get back...so we went ahead with those. We got out of primary children's at the end of January sometimes (very end) because within the week we all left to go to Disney Land to party with my family. It was nice to have so many people there to help with Abi. It really does take a village for this one - she can be quite the challenge, but even while screaming in your face she has such a charm about her that is absolutely captivating. Disney was awesome overall and at the beginning of the trip she was doing well - they had increased her doses one more time and the increase medicine had started to kick in. But by the end of the week her seizures were again rearing their ugly head. So on February 8th, on the way home from California we stopped at the Emergency Room again in St. George to get another loading dose of phenobarbital to again put the seizures at bay. This was the last time we have seen those types of seizures. We made it a few weeks before we saw any other type of seizure behavior -- well ones like that, there were lots of little things she did that I think were and are seizures, but they are so micro it's so hard to tell. But as of February 9th 2013 we have not seen the same seizures that were first presented. We will soon come to see a few new kinds in the future - but I'll leave that for next time.

This is AbiNormal.


Next Time on AbiNormal

- 2 new types of seizures
-collic/reflux
-screaming ALL the time, arching back badly.
-very little, if any, sleep.
-heavy/labored breathing
- lost half a pound between end of feb/beginning of march
(a lot of this stuff seems like forever ago, but it really hasn't been that long! weird)


- happier overall - used to sleep or scream, and wasn't sleeping much.