Tuesday, July 24, 2012

Raptor-Baby

Tomorrow OZL will be 8 weeks old! And so far the extra prednisone actually seems to be helping. My hands and feet are still giving me trouble, but not too much trouble  - so we're hanging in there with the breastfeeding for now. And my baby boy is fat and happy! Well, always fat. Mostly happy. ~:o)

And, for your listening entertainment, I present to you this: the sounds my child makes while totally asleep. It's like I gave birth to a raptor-baby or something...

video

Wednesday, July 18, 2012

Seven Weeks

I have to admit that I am sort of reluctant to write this post. I really don't want to discourage anyone out there with RA from following their dream to become a mother. But, personally, on my own journey I have been desperate to find honest stories about the realities of birth and motherhood with RA. I wanted to know what to expect so that I could prepare myself. But I found very few real stories, and so it has been scary to approach this post-birth period with almost no idea what to expect. So I'm sharing my story in the hopes that it will help - and hopefully, in the end, encourage - other women with RA who want to become mothers.

Today is OZL's seven week birthday. And, unfortunately, it's official: my RA is getting worse.

My feet (toes, ankles) and hands (fingers, thumbs, wrists) hurt a little bit more every day. The pain in my hands is particularly problematic - it's getting harder (and more painful) to pick up OZL, to wash pump parts, to carry the car seat, to snap those tiny snaps that are all over everything he wears...

I have to admit that it is really frustrating to have the RA return at what is already a really stressful and exhausting time. And I'm not superwoman - sometimes I have to sit down and cry about how unfair the whole situation seems. But, for the most part, I am trying to keep my spirits up and do the best I can to stay active and enjoy my time with OZL. This morning we even took a little hike (the picture on this post!)

Even though I'm hurting, I'm not quite ready to give up on breastfeeding just yet. So I emailed my rheumatologist, and with the blessing of my pediatrician we decided that it is time to increase my dosage of prednisone. Anyone who reads this blog regularly knows how I feel about prednisone - I hate the stuff. And I am bummed to have to take it because it will make it much harder for me to lose the baby weight (and will actually probably make me gain more). But, besides handfuls of advil, it is pretty much the only option I have for medication that is safe while breastfeeding. So I really hope it helps.

For now I still plan to fight to continue breastfeeding, but I'm also trying to come to terms with the need to stop, because the end is in sight at this point. I keep repeating to myself, over and over again, a comment that one of my readers left on my last post:
To your son you are more important than your milk.
I know this is true. I really don't want to have to stop breastfeeding before either of us is emotionally ready to do so, but if the RA keeps getting worse I really won't have a choice. I will have to go back on my meds in order to be the mother that I want to be. And, as I keep telling myself, there is absolutely nothing wrong with that.

Thursday, July 12, 2012

Six Weeks Later

I know, I know...long time no blog! But around here we've been really busy! We've been nursing. And changing diapers. And nursing again. And bouncing and rocking and swinging. And nursing some more. And taking a bath in the sink. And pumping breast milk. And nursing still more in the middle of the night (seriously - this kid is hungry!) And when I've had a little bit of time to spare I've mostly used it for laundry or showering or feeding myself and APL or, occasionally, sleeping!! So though I've been thinking about all the things I might like to say in a blog post for a while now, it has been quite hard to find the time to actually sit down and type it. In fact, it's taken me two separate days to finish this post!

OZL is now six weeks old and he's doing really great. He is growing so very fast! He was 6 pounds 5 ounces when we left the hospital and today he weighed in at 10 pounds 15 ounces! He still eats, on average, every 2 to 3 hours around the clock. Occasionally we'll get a 4 hours stretch, and that is always nice. We once got a 5 hours stretch two nights in a row and APL and I thought we were in heaven! So much uninterrupted sleep for us! Because, if you haven't guessed, OZL's schedule has made it quite difficult for me and APL to get sufficient sleep. And sometimes that can be really hard. I mean, I'm obviously no stranger to fatigue, but sleep deprivation like this is a whole other kind of tired entirely. Sometimes I get exhausted to the point where I am no longer even coherent and I just sit down and start crying. Some nights are much harder than others (which makes some days a lot harder than others) but we're hanging in there and doing the very best we can.

Since we know how important it is for me to stay as healthy as possible right now (after all, I'm the milk factory!) APL has been working hard to make sure I get as much sleep as I can. He'll take the baby in the evenings so I can go to bed earlier. He'll stay up with me in the middle of the night if I need help. He'll give OZL a bottle of pumped breast milk in the mornings so I can have slightly more uninterrupted sleep. So APL has been super amazing - such a wonderful dad and husband. We are also extremely lucky to have my mom staying with us right now. She has been a totally invaluable source of support - especially in the food department, since she cooks an amazing meal almost every night (when, let's not lie, APL and I undoubtedly would have been too exhausted and just made a frozen pizza).

So I suppose I ought to get to the point that everybody who reads this blog is probably wondering about: my RA. I guess I have to report that there's good news and there's not so good news on this front.

The good news is that, with the exception of the extreme exhaustion cryierd kind of days, which still happen every once in a while, I have actually been feeling pretty good lately. My incision has completely healed and doesn't hurt at all anymore. And I have a decent amount of energy, especially considering how little sleep I have been getting. I just had my six week checkup this morning and I've been cleared to exercise - and I'm happy to find that I'm actually excited to get moving!

Then there's the not so good news. It hasn't really reached the point of being bad news, per se, but there's certainly nothing good about it. I am definately starting to experience some joint pain. It started in my left toes maybe three or four weeks after the birth. It isn't a huge amount of pain in my toes - mostly it's just annoying - but it has been a little bit unnerving because that is where my RA originally started. And then, just in the past week or so, I have started experiencing pain in my hands. I've been waking up with sore and slightly swollen finger joints, and I've had to break out the wrist guard for my right wrist. To be fair, I have been doing a lot with my hands/wrist lately - lifting and carrying the baby, moving the heavy car seat in and out of the car, changing diapers, washing bottles and pump parts, snapping tiny snaps on clothing. But, unfortunately, I don't think this really explains away all the pain I've been having in my hands. So, while I'm really trying to stay positive that my RA symptoms will remain minor for the foreseeable future, I can't help but wonder how quickly the rest of my joints might follow. And the whole thing is worrisome because I really, really want to breastfeed as long as possible - and I won't be able to anymore if I have to go back on my RA meds.

Looking for guidance or support on this issue is almost entirely unproductive. Mostly you end up with extremely vague statements about the potential for a post-birth flare (i.e. not at all useful!) Like this gem from WebMD: "Women with RA tend to flare within months after giving birth." Or this study, which says women frequently experience "disease exacerbation after delivery." They don't say when to expect it or how bad it will be. Or what the hell you ought to do about it!! I know that is because everyone's RA is different, so there's really no way to tell what will happen to any particular person, but I can't even seem to find much anecdotal evidence of individual stories. And, though I'm honestly trying not to think too much about it, sometimes I can't help wondering how much longer I have before my body turns on me again. The uncertainty can be pretty frustrating.

In the meantime, I'm trying my best to enjoy the more or less pain-free time that I have been granted. And I am pumping. As much as I can. I'm trying to get as much breast milk stored in my freezer as possible. That way, if my RA flares and I end up with no choice but to go back on my meds, I will know that I have done everything in my power to give OZL as much breast milk as I can possibly provide, so that he gets the most healthy start he possibly can. And I'm still hoping/wishing/praying that I won't have to deal with that issue any time soon.