Hi Dianna
I totally understand how you feel. It is a very hard decision.
Here's how it was with me-
When my rsd first started, Bailey was almost three and Olivia was 7 months old. It started in Nov 2000 and I was diagnosed in March 01. After a bit of playing around with medications for a few months I was able to keep my pain levels in check. My rsd at that point only affected my right arm (up to t-shirt sleeve level) and my right hand.
At one appt with my pain dr in mid 2001, we asked what would happen if the meds no longer helped (I was only on tramal at that point). He said the next stop would be methadone, and once we go down that road, it would be unlikely I could go back to no medications in order to fall pregnant. So we made the decision to stop the tramal right then and try and have another baby. It was probably a very naive decision, but we felt it was "now or never" and we desperately wanted more than two kids, so we went for it!
Thankfully I fell pregnant within a couple of months and although the pain levels were high at first, by about the 10 week mark they'd eased right off and I basically had a "remission" of symptoms for the whole pregnancy- only having pain again in the last couple of weeks as the fluid levels caused problems and little Mr went 10 days overdue
He was born in June 2002.
The pain came back within a couple of hours of his birth so I decided to bottlefeed so I could go back on my meds and be a better mother to the three kids. I adapted everything so I could do it all with just my left arm/hand and had plenty of help at home. But I did have some movement and strength in my hand- I could do buttons up and scoop formula and dry him after a bath etc.
But we thought that would be it, as my rsd got worse over time and we both had to accept that even if we wanted four kids (we're both from four kid families) that it wasn't for us and to be glad we had three beautiful kids.
Jump forward to 2004 and 2005 and thanks to successful ketamine infusions, I started having good periods of time without any pain, so the whole baby option was possible again. We decided after my second infusion to try for a baby- if it happened it happened, if it didn't then it wasn't meant to be. I fell pregnant with Hannah when I was in my sixth month of pain relief (highest pain levels were about 4/10 only every now and then, mostly I had nothing).
Amazingly I got 10 months of pain relief from that infusion, but it all came crashing down when I injured my right leg and the rsd spread there, and reignited my arm, too. After that the pain was a nightmare and I was stuck on little to no meds!
Although I don't regret having Hannah at all, if I would have known going into the pregnancy that I would have the rsd travel to my leg, I wouldn't have gone through with it. And also for me, if I had rsd in both hands, I wouldn't have had any more babies. It's just too hard. The physical logistics are draining. You can look after a baby one handed, but try changing the bum of a toddler that doesn't want to be changed and you've only got one arm to hold them still and change them at the same time! The newborn stage isn't so bad, its the big wriggling toddler that pushes your skills!
But of course this is just my experience and opinion for myself, that I wouldn't do it with my rsd in more than one limb. Everyone is different and everyone's rsd is different.
It's also worth noting that my husband has been home as full time carer for me and the kids since Dayne was about nine months old, as I just couldn't do it on my own. So although I could sit and feed Hannah her bottle etc, its very hard to move a baby here and there when you can't walk without crutches. I had to rely on Matt to do all of the physical things, even just getting her in and out of the cot. Although I was clever and fixed a stroller drink holder to my crutch so I could carry a bottle from the kitchen
But I think having Hannah and Dayne has been a huge ego boost for me, if you know what I mean! It's like sticking your fingers up at rsd and saying "ha ha I did it regardless of you!" lol
and the joy I get from my kids is amazing. They are my motivation to keep going. I don't regret having them at all, its hard but its soooo worth it! And my older girls are very happy kids. They help out a lot, but that's just in their nature, it's not because they HAVE to help.
If it wasn't for the ketamine success I wouldn't have had Hannah. And we did talk about it a lot with my pain dr before it happened, and he worked with my Ob dr in regards to the birth etc (I had a c/section), so there's a lot to weigh up and consider before deciding which way to go.
I hope I've answered some of your questions. Of course everyone is different, you need to work out if you can manage without your meds, or if your meds are safe during pregnancy as not everyone gets a remission of symptoms during the pregnancy, and you need to make sure your hubby is totally with you on this, as the chances are they'll be doing a lot of the work while you're pregnant and afterwards.
I hope you do go for it, a few members here have had babies post-rsd and they're all very proud of themselves for doing it, and will probably come in here and tell you their experiences. There's also another recent thread on this so try searching for that and see what others have posted there.
Good luck!
x Kate