Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Preg-Labor-Deliv

Our Pregnancy: A Baby in My Lady Parts
I found out I was pregnant on Sept 16, 2006.  We were excited and scared, but mostly excited.  The pregnancy went well.  I barfed almost daily for the first 3 or 4 months.  I gained 30 or 35 lbs by the end.  I loved feeling the baby move (although that was really the only thing i liked about being pregnant).
I had cramps for the first 8 weeks which made me feel constantly like I was about to start my period and that I couldn't really be pregnant.  One of my sisters told me she had the same experience with her pregnancies so I stopped worrying about it.
I remember seeing that first ultrasound when the little heart beats.  That was really neat watching that little flash on the ultrasound screen.  The pregnancy seemed very official at that moment.
At 3 months along, I woke up spotting one night.  It seemed to heavy to be a healthy thing and I surprised myself by crying for a long time.  I didn't realize I had become so attached to the little bundle of cells growing in my uterus.  I called the doctor's office the next morning and the nurse said I probably pushed a little clot out and that if the spotting continued I should call back but not to be worried otherwise.  The spotting never happened again.
The 16 week ultrasound was amazing!  I loved seeing our baby's profile and little arms and legs.  I loved finding out that the baby was a little girl and that she appeared to be in good health.  The news of good health was the highlight of the pregnancy.  Also I was secretly excited to have a little girl first!  On the ultrasound video she did this funny little jaw chattering movement that we thought looked really strange. We wondered if it was a problem or a seizure (it probably wasn't but little did we know what was to come!).
During the pregnancy I worked at a rec center as a workout instructor teaching an abs class (funny for a pregnant girl) and subbing in circuit training and cardio boot camp classes.  One day, about 7 months into the pregnancy, I worked too hard in the abs class and didn't feel the baby move for about 5 hours.  I went to the doctor to be hooked up to the monitors and after the baby heard her daddy's voice she got all sorts of crazy in my tummy again.  I can recall one other day where she didn't move much but I felt her here and there through out the day.
Other than these little things, the pregnancy was normal and all was well.  I loved having that little alien growing inside me, except the painful parts, discomfort, not sleeping, and barfing.  Oh and don't forget my swollen ankles (and face).  It was pretty amazing.  (btw: last pic is the guy that got me pregnant.  also he is my delightful husband)




Labor Time:  My Laborious Labor
I came down with a nasty, snively, coughing cold about 2 weeks before my due date which was May 30.  On my last day of work at the rec center, May 18, I was working furiously to finish writing a summer rec program for the city.  I had so much left to do that I forgot to take proper food, pee, and stretch breaks.  I worked 2 shifts that day for a total of 10 hours, most of which I spent sitting in front a computer typing and blowing my nose... and coughing.
I got home from work just after 10 pm and was feeling really lousy.  I asked my next door neighbor/best friend/band mate/personal nurse, Fay, what was going on with me.  She said I had a fever and needed to take a calming bath and go to sleep.  I did just that.
However, 2 hrs later, just after 12:30 a.m. I awoke with a sudden pressure-like urge to urinate almost as if the babe had shifted onto my bladder and was causing that feeling of pressure.  So I went peeps and went back to bed for 45 min until I needed to "go" again.  I went back to bed again for another 45 min til the call of nature rang again.  This pattern continued for a long while with the sleeping intervals changing from 45 min to 30 min to 15 min and back to 30 min. But by 4 a.m. I was just too frustrated to sleep so I watched info-mmercials on the couch.  I eventually was so tired I got a couple hours rest.
Around 8 I called my mother-in-law to find out when the boys (ie: my husband) would be back from the father and son camping trip.  She didn't know so I kept trying to sleep until noon when I started barfing and having loose bowels.  Soon after my husband made it home and ran to the store to get me jello and a smoothie.  I puked up both.  Next was the super frustration.  I wondered how I was supposed to live with this kind of discomfort for the next two weeks.
Curtis (that's my husband's name) went next door to get Fay, the awesome friend, who looked me over and said I was in labor and it was dumb that I didn't realize it.  Hello. I totally should have... pressure every 45 min, 30 min, 15 min, 30 min.  Duh.  So then I panicked realizing we were not at all ready for the baby.  No clothes were washed, crib was still dissembled, car seat not installed. Yikes!  That is when my amazing circle of friends jumped into action.  Within an hour clothes were being washed, the crib was set up, and the car seat was installed in the car, all thanks to my sister and her husband who lived upstairs, and Fay and her husband who were next door, and my sweet husband.  I just stayed on my bed and whimpered.
By about 2:30 p.m. I was crying (I'm wimpy) and Fay said it was time to go to the hospital.  Curtis drove me... as slowly as possible, quite unlike his usual driving.
At the hospital the nurses checked the ol cervix and said I was only dilated to a 2.5 and that I was indeed wimpy so they told me to walk around a bit to get some real progress going.  I think I got up to walk around and a contraction hit and had me crying.  They felt bad so they hooked me up to that monitor that shows the spikes and numbers and saw that the contractions were more intense than they had realized.  Thank goodness cause I was hurting a lot.
They put us in a room and gave me a temporary pain killer that helped a lot but slowed contractions.  2 hrs later I was finally to a 5 and got the blessed epidural, which actually was very uncomfortable to get.  But after it started working I could help but smile.  I rested and chatted  and rested until it was time to push.
My contractions never got closer than 5 min apart (on average).  They were sometimes 3 min apart and sometimes 6 min apart.  The doctor came in when the nurses announced it was Pushing Time!  It took 2 hours to push out the kid because the contractions were so far apart.  We would do the whole pushing scene and then sit around chatting waiting for the next one.  I have to say pushing is harder than I expected though.  I pushed with all my strength and only got small results.  The doctor did laughed that my cough was helping to push her out.  Every time I coughed, her head came a little farther out o' the womb.
Finally at 11:42 (ish) p.m. we had success!  A beautiful, dark haired girl was born!


Here comes the kid:  Delivery and After the Birth (not "after birth")


As she was being delivered, the doctor and nurses started moving around quickly and quietly as if trying not to worry us about something that was worrying them.  I really knew something was up when my friend, Fay who was a nurse on that floor, stepped in to start helping although she was just there to be with me not be a nurse.
As soon as she was out, the doctor flung her onto my chest for a half second until a nurse grabbed her to start doing some tests.  She didn't start to cry right away because she apparently wasn't breathing but she started breathing and crying shortly after.  They put her on the heat-lamp-crib-thing and found that she had a temperature of 103 F probably because I had a temp of 104 F.  So they turned of the heat lamp and didn't wrap her up.  Then they noticed that her blood-oxygen saturation level was down in the 70's instead of in the 90's where it is supposed to be.  So a nurse grabbed her and took her away to the NICU for a couple hours.
I remember thinking how beautiful she was even if she was covered in gross stuff and swollen from being pushed out.  Her right ear was also folded down but she was perfect and beautiful and had a cute cry.  During the 2 hours that she was in the NICU I kept trying to picture her.  I could barely remember what she looked like and I was so excited to have her back.
We stayed quite calm while the doctor and nurses were fussing around her and during the time she was away in the NICU.  When they brought her back in the room two hours later she was even cuter than before.  She was clean and not swollen.  Also, her ear had made it back to the upright position!  She was perfect.
They handed her to Curtis and the most beautiful thing happened!  It is the best mental image from my entire life's mental imagery collection!  Curtis has always been a bit awkward with babies and was nervous to have our own because he wasn't sure he would know what to do with it but from that first moment he held her there was no nervousness or awkwardness.  It was pure happiness exuding from his face.  I could see how much he immediately loved her.  It made me love both of them so much more!
We had a short list of names that we liked but as we watched her and held her we thought only one fit. I was hesitant to go with it because of all the flack people gave us when we told them our fav name but we did it anyway and have no regrets.  Our name choices were:  Isabella, Lily, and Nadezhda.  We went with Nadezhda.  It is a Bulgarian and Russian name.  Curtis went on a mission for our church to Bulgaria which is where he learned the name.  You say it like this:  naDEZHda.  Accent on the DEZH part.  The ZH makes the z sound as in the word azure.  Nadezhda means "hope".