Okay...so it's been a while since my last update. I wanted to wait until after my 6 week follow up appointment and to see what was happening with the pain in my abdomen...if it was normal pain from a C-section or if it was RSD spread. Long story short...the answer to that question is that it is RSD spread...yay me...

I don't know that I ever explained exactly what happened when I went into labor...as it was sort of strange. I will go into some detail...so if you don't want to hear specifics about the birth itself then I recommend not reading and skipping ahead to the last paragraph just summing things up.

I had gone to the doctor the Friday before I had the baby for a growth ultrasound to check on the size of the baby and a non-stress test to see if I was having contractions. I WAS having contractions...some big ones according to the nurse...but I didn't feel anything.

So Saturday rolls around and I lost my mucus plug while I was at work. I know even when you lose that it can still be weeks until you go into labor so I wasn't too worried...but since the doctor had said on Friday that I was 1cm dilated and 50% effaced I made a mental note of it. This is something I wished they talked about more in the classes I went to because it caused some confusion for me.

So Sunday I was off work and I lost a little more of the mucus plug in the morning. Again...I had read online that this can happen a little at a time so I didn't think anything of it. I was tired...but no more than usual. My boyfriend and I went to his family's house to celebrate Thanksgiving early because some of my boyfriend's brothers were spending the holiday with other family or out of town. I was feeling uncomfortable but no more than I had lately since the baby dropped a couple of weeks earlier. I noticed when I went to the bathroom that things were still mucus like down there but since I had lost the mucus plug I thought it was just some more of that.

Monday morning rolls around and I'm supposed to go into work but I just don't quite feel right...nothing specific but I feel like I should call the doctor as I am still having some mucus like drainage and I think there's a possibility that my water has broken and it's a small leak. They sound skeptical on the phone when I call and explain what is going on but they tell me to come in an hour later. I call my boss at work and tell him I'm going to the doctor but will be in afterwards if it's nothing.

So I tell the doctor when I see her that I think my water may have broken and it's a small leak...but I'm not sure. She sort of looks at me like I'm stupid...but what the heck do I know...it's my first baby for goodness sakes. She checks it out and says she doesn't think the water has broken as she can still see and feel the water sack. She does a test of the mucus and it comes back negative for the water breaking. Okay I think...this is not THE day and I text my boyfriend telling him he can go to work.

THEN she says, "Let's do an ultrasound though to check your fluid levels." Okay...I always like to see the baby on the ultrasounds so I was cool with that. Yeah...my fluid levels were VERY low...dangerously low...and the doctor told me to go home, eat, then go to the hospital because they were going to do another test that's more sensitive to see if the water had broken but even if it didn't...they were going to need to induce me because I was having the baby TODAY. Yikes...how did this go from your bag of water is fine and not broken to you're having this baby today?

So I go to the hospital after I eat lunch and they get me hooked up to all the monitors. I have my childbirth plan with me and tell them I want an epidural as soon as possible and explain my RSD. They like my birth plan and say it's very helpful to have everything on there about my RSD. They have me hooked up to all the monitors and I'm having some pretty major contractions and they're pretty close together...but I can't feel them at all.

I get my epidural and by this time I am feeling some very slight pressure...but compared to RSD...it's not bad at all. I also spoke to the anesthesiologist about keeping the epidural in after the birth to give me additional pain relief to hopefully reduce the risk of spread and he agreed that was a good idea. A couple of hours later...despite the epidural...the pain is getting more intense...but still nothing I can't handle easily. Mostly it's just exhausting. They induced me somewhere along the way...and that test to see if my water had broken came back positive at the hospital...I guess the one they use is much more sensitive than the one at the doctor's office.

The doctor was a little condescending to me about not coming in Sunday when I noticed the mucus like drainage but I seriously wanted to punch her in the face for that because when I first got there she was all, nothing abnormal here everything looks fine but let's just do the ultrasound in case. If they had done the ultrasound the day before...would the fluid levels have been low enough to want to send me to the hospital? I think not...but whatever...

Anyway...after about 6 hours at the hospital I started to run a fever and the baby's heart rate started to get too high. The doctor said I had not progressed far enough along for a vaginal birth so we needed to do a C-section...NOW. Seriously...from the time the doctor said this to the time I was in the OR was like 15 minutes...and it was only that long because they gave me some nasty thing to drink and I proceeded to projectile vomit for several minutes...which took a little while to clean up.

They get me to the OR and it is FREEZING in there. Holy crap...I was in so much pain from the cold and I was shaking so bad that they were afraid the meds wouldn't work. They put this vacuum like eat thing over my chest and that helped get me warmer...but the pain was still pretty bad. I didn't expect it to be so cold in there. Then they give you some stuff to numb the lower half of you...not sure what it was. They kept poking me with a pin or needle in the belly and asking if I could feel it. Yes...for a very long time the answer was yes and they seemed to be getting very concerned but kept upping the meds until FINALLY I couldn't feel anything. I was also getting very loopy and things got pretty hazy after this. I remember my boyfriend holding my hand and I remember when they laid the baby down next to my head so I could see her and meet her...and then I remember being in the recovery room.

This recovery room was a little scary. I was by myself for a while with just the nurse because my boyfriend was with the baby in the special care nursery until they got all the IVs in and everything and he was sure she was fine. This was several hours after delivery. The nurse was very concerned because I was bleeding more than was usual so they kept me there for a little longer than normal before moving me back to my room.

The pain at this point was pretty bad...even with the epidural AND an addition pain pump they put directly into my abdomen. They come in regularly to do this "uterine massage" thing...oh my god is that agony. They left the epidural in until the next morning and I wasn't able to hold my baby and visit her in the special care nursery until it was taken out...something I didn't really think about before so thought it worth mentioning. They left the other pain pump that was running straight into my abdomen in for a few more days. The doctor said they usually do one or the other (epidural or pump...but did both for me because they thought it might help with the RSD).

Now here's where things get a little crazy. The baby needed to be on 48 hours of antibiotics because of the fever I was running and the C-section. Then, if everything went fine, she would get to come into the room with me after that was done...but she needed to stay in the special care nursery until the antibiotics were done. Wednesday rolls around and my boyfriend and I go to visit her at 9am and her monitors start alarming because her oxygen saturation levels are dropping. The doctor comes over to take care of it (she looks fine and her heart rate and everything else were fine) and then tells us this is the second episode in the last 2 hours and he feels they need to send her over to another hospital for a higher level of care.

So she gets sent over to another hospital in an ambulance and I have to stay at this hospital because the doctors think I need a blood transfusion because my counts are all too low. My boyfriend spent the next few days going to see the baby at that hospital during the day, taking pictures of her for me, talking to the doctors while they ran tests...and then coming back to stay with me at night and in the morning. I did end up getting a blood transfusion on Thursday but that helped my counts go up and they released me on Friday. We went home quickly and then went over to the hospital to visit our daughter. She was there another week in the NICU and we didn't get to take her home until she was 11 days old.

I mention all of that because I think it probably has something to do with the fact that my RSD spread. Having a baby in the NICU, transferred to a different hospital than you so you can't see her for days, them running a ton of tests and talking about all sorts of possibilities like viruses, seizures, strokes, etc and not finding anything, spending a week visiting her, trying to pump breast milk every 2 hours while at home and getting little sleep, the long car ride to the hospital every day...this was all VERY stressful. And we know what stress can do when you have RSD. So...yeah...it was a rough period. Thankfully...they didn't ever find anything wrong with her and said that means it's probably something she would grow out of in a week to a month and she would be perfectly fine. We have a follow up with neurology this coming Tuesday...but she's been great since coming home so I am not worried.

So...lots of stress going on following the birth...and I'm still in lots of pain. They gave me Norco and Advil...but it wasn't doing anything for the pain at all. I followed up with the doctor 2 weeks later and she said I could take baths again. THANK GOD! That was something I didn't realize...you can't take baths after you give birth and that is one of my primary ways of keeping my RSD under control. At this point...the doctor isn't concerned that I still have pain. The pain isn't at the incision site (which was healing up well)...but it was above that and inside. She said that's where they tunnel up and then slice through all the nerves...so it's not uncommon to have pain there.

Fast forward to my 6 week appointment...the news is not so good. Everything has healed up well...the incision and everything inside looks normal too...but my pain is still really severe. The doctor says at this point the pain from the C-section should be gone. Some people may experience some minor discomfort at this point...but the pain should basically be gone. She thinks it's the RSD. I thought so too since the pain meds didn't help and it FEELS like RSD pain with the burning and sensitivity and such. Problem is...it's internal so many of the things I do to treat my RSD just don't quite cut it. They help a little (heat, warm baths, etc) but far less than normal.

The other problem is that I am breastfeeding so my options for medications are basically zero. I could keep taking the Norco but they're not helping so I don't feel like there's any point with that. So the doctor has me off work until Feb 15th and I'm using this time to learn to cope with the pain as much as possible. Not an easy task when you have a newborn to take care of who keeps getting bigger and bigger...but we're figuring things out. I am optimistic about returning to work in February and being okay. I was afraid that the RSD would spread to my abdomen. I wanted to avoid the C-section because of this fear (I had spread after a lumbar sympathetic block...I didn't think my chances were good at avoiding spread after something much more invasive like a C-section). Then add to all of that the stress in the weeks following the delivery and my inability to do some of the things that would have helped (like the baths)...well...it seems like things were stacked against me.

In summary...here's what I would say about my experience with RSD and pregnancy. The pregnancy itself was great. I did not experience remission but things didn't get worse either. Actually...I was so happy and so distracted by the pregnancy that I feel like even though I didn't go into remission with the pregnancy that I was able to cope with it better. I was a very happy pregnant woman and even the slight discomforts were moments I treasured...just loved the entire experience of being pregnant. The BIRTH however was a killer for me. Nothing went the way I wanted it to and in the end my RSD spread to my abdomen. Only time will tell how that goes...if it ever gets better with time...but for now I will say that it totally sucks and there are times I feel like a bad mom because with how bad the pain is I can't carry my little girl for long periods of time and need to set her down in her swing. I still read to her when she's in there, I use a carrier if I know I need to carry her for a while, we interact a lot...but I wish I could always hold her when she wants to be held and sometimes I just can't. That sucks. Would I do it all again? Absolutely...but hopefully not any time too soon because I think two babies in diapers and all that WOULD kill me.