transcended.net

*** I was surprised to get some labs back through my iPhone app last night, surprised because they came from the SF lab which hasn’t been online, up until now apparently. Yay for technology!

Anyway, I started at the bottom with my urine results and they were perfect. “NEG” across the board (for protein, blood, and everything else) which is better than my pre-pregnancy baseline. Next I checked the Comprehensive Metabolic Panel (blood test) and my creatinine was sitting pretty at 0.9, my protein was well within the normal range (when blood protein is low it can mean it’s being leaked out in your urine, which is bad) and my albumin was a little low vs previous results but according to some standards still normal (same issue for blood albumin as blood protein). Something to keep an eye on, I thought to myself. Also, Dr. MFM had talked to me about how blood creatinine is actually supposed to decrease during pregnancy so he thought by 20 weeks we could expect to see it at 0.8, therefore even though 0.9 is good, it could be better.

The last result was my CBC (complete blood count), at this point I was feeling pretty good about things but of course, there had to be a “but.” My anemia continues to get worse. Whereas pre-pregnancy I was hovered around the low end of normal, I am now all the way down in “mild, almost moderate anemia” range with my hemoglobin at 9.7. According to Dr. Google the cut off between mild and moderate is 9.5 so I’m right there, but luckily still have a ways to go until I get to “severe” which is under 8.0.

You may recall that “severe anemia” is one of the contraindications for flying while pregnant so if things continue to get worse we will likely have to cancel our Hawaii trip. But I’m more concerned about what my lack of blood means for the baby. I’m assuming it can’t be anything good? I have an appointment with Dr. D (regular OB) this Wednesday and will definitely be bringing this up but I feel like maybe I need to send Dr. F (rheumatologist) an email and give Dr. MFM a call about this as well. We need to head this off before I’m in blood transfusion territory! I need to know if I can “fix” this by just eating more protein or if it is hemolytic anemia (meaning my red blood cells are being cannibalized by my immune system) if it might be necessary to increase my prednisone (really hoping I can fix this through eating because I HATE being on more steroids).

*** I’ve decided to enroll in a UCLA extension online course called Development in Early Childhood. I think I’d like to do their certificate programs for Early Childhood Education but even if I end up just taking this one course, it should be useful (or at least interesting) given the fact that I’m about to have one of those little humans running around the house. I’ve been known to have a lot of random dreams for what I want to be “when I grow up” (What do you mean I’m grown? When the hell did that happen?) and the latest is to someday start a bilingual daycare. I think given the demographics of the bay area and the growing importance of China (and thus Chinese) this is not a completely crazy dream. Perhaps I shall elaborate on this a bit more at some other time though because a bullet point probably isn’t enough.

*** I haven’t felt the baby move anymore, at least not for sure 🙁 My coworker who is two weeks ahead of me told me I’m “lucky” because “it tickles and is distracting.” Sigh. Maybe I’m okay with not being a normal preggo after all. If it means I’m going to enjoy and cherish every single bit of this pregnancy, then I guess, in a way, I’m sort of lucky.

*** Unfortunately I’m a back sleeper and I think I’ve reached the point in pregnancy where that’s a no-no. I’m really trying to avoid one of those giant pillows (because I already share the bed with a 20lb cat and 180lb hubby. Not a ton more room to go around.) So far using hubby as my “body pillow” seems to be working somewhat. I use him to keep my body tilted at a slight angle when I can’t stand outright side-sleeping anymore.

I’ve written about this before but I suppose it bears repeating given the nature of this post. I am not, by definition, “infertile.” But I think I get that world, at least much more so than I get the “fertile” preggo world.

I get what it feels like to know that comforting statistics aren’t actually comforting at all if you happen to find yourself on the wrong side of them. I get the pain of watching people pass you by and then lap you as you pray for it to be your turn. I get mourning “normal” even once you do finally have the dream of being pregnant come true.

I don’t know if resentful is the right word, it probably isn’t. Maybe jealousy would be more apt. Whatever, I still feel something every time I hear another pregnancy announcement or talk to another pregnant lady and hear all about her blissfully “normal” experience. No thoughts wasted on preemie survival rates or making sure there is a Level 3 NICU (in-network) at a vacation destination “just in case” (tip: Oahu has the only Level 3 NICU in the Pacific Islands). No looking up the preeclampsia forum. No fucking clue what MFM stands for.

Sigh.

I feel like the Bad News Bears every time I try to add to any conversation because I am always telling other preggos things they clearly don’t want (and likely won’t need) to know about.

No, we won’t be buying baby things until we reach viability. What’s viability?

(Actually this is not entirely true, there was a coupon code for a few free items that only lasted a week so I ordered them and when they came I put them in a box in our storage closet).

Why, yes, we’ve had six ultrasounds and will be having a fetal ECG done every two weeks starting at 18 weeks due to a potential heart defect. What’s an ECG?

Well my due date is February 15 but it’s unlikely my doctors will let me go past 39 weeks since they’re worried about preeclampsia. Pre-eh what?

You get the picture.

I feel like the orange amongst a sea of apples.

At the moment, amongst real life friends, there are eight babies (including ours) expected between December 2012 and March 2013.

My first thought upon reflecting on this was thank GOD I am pregnant or you all would be in for a seriously epic pity party (a la February). My second thought is one that I’m pretty sure puts me squarely in the “only an infertile” camp, it was that, if I lose this baby I will have seven reminders of what should of been.

Horrible, I know. Dark, I know. Incredibly self-centered. I. Know.

It wasn’t a thought I wanted to have, believe me, I wish my mind didn’t turn to such things. But how can it not when since before I even got pregnant I have been warned over and over and over again how my doctors will be “walking on eggshells” and have their “fingers crossed” the whole time I’m pregnant. How can that fear and anxiety, and let’s be honest, reality not permeate my thoughts?

I was talking to EJ (have I ever mentioned how thankful I am that we reconnected before we both started going through all this shit?) about this yesterday and how hard it is to get more and more attached to your baby as each day passes, while becoming more and more terrified at the idea of losing them. Once past the first trimester other preggos are onto planning the nursery and buying baby clothes while we count the days, hours and minutes to viability because for us that is when we will finally be able to breathe.

Nobody else gets it. Not that I expect them to.

But I still feel like an outsider looking in.

Please don’t misunderstand me and the point of this post. I am so grateful for this little one growing inside me. This is a dream come true and it truly is everything I’d hoped for and more. I know how lucky I am to even be having this experience and I know that even just twenty or thirty years ago it would not have been possible. I feel so blessed every single day I get to be this baby’s mommy and carry him (or maybe her) inside of me. I am constantly amazed at the fierceness with which I can love someone who’s face I don’t even recognize, but I’m unquestionably in love.

But the depth of that love is also what scares me. I’m not in the “safe zone” and so I am so scared to lose this precious little one. I know I have to trust God, and I do, after all He is the one who entrusted me with this miracle in the first place. But that doesn’t make this any less scary.

I am sixteen weeks today. Exactly eight weeks from viability. Twelve weeks til this kiddo has a 80% chance of surviving outside my womb. Eighteen weeks til my first goal (34 weeks). Twenty-one weeks til viability (my loftier goal).

Please body, I’m begging you, don’t fail us.

So far this pregnancy has been about as ideal as you could ask for (and as always *knock on wood*!!). When I first got pregnant we wrote off the possibility of a baby-moon almost immediately, figuring it was simply not worth the risk.

But as things have progressed, my blood pressure remaining stable at approx 110/70 (better than before pregnancy) and the protein in my urine at neg to 1+ or thereabouts (better or the same as before pregnancy). I have started having a tiny bit of joint pain here and there but nothing that is concerning me or my doctors when compared to my pre-pregnancy pain which was actually a lot more frequent and higher on the pain scale.

Things have been so good that I started longing a little bit for just one last trip as a couple and then even more so when Paul pointed out just how cheap tickets to Hawaii are right now! Like the cheapest we’ve ever seen. So we started doing a bit more research into the possibility of a trip…we both had taken off the week before Veteran’s Day so we knew that was when I was likely to go. That meant traveling during week 25-26. I looked into trip insurance and found one that insures just plane tickets and allowed for pre-existing conditions as well as “Complications of Pregnancy” (Travel Insured if you’re curious) as long as you purchase the insurance within 14 days of paying for the tickets. I called them and confirmed that if I had any blood pressure issues or anything like that where a doctor felt it was not safe for me to travel (related either to pregnancy or lupus) that this would be covered and they said it would be.

I also looked up risk factors for flying while pregnant and it seems there are three main concerns: 1) severe anemia – I am slightly anemic but far from severe, if I become more so this would be a reason to cancel and would be covered by the trip insurance, I plan to have my blood checked the week that we leave for our trip, 2) sickle-cell – nope, not a concern for me at all and 3) clotting disorder – there is actually no evidence that pregnant women are at increased risk of blood clots while flying so this is more of a universal flying concern, the recommendations is just to make sure to get up frequently to stretch the legs and to wear compression panty hose. I was a little bit concerned since I know women with lupus can have antibodies that make clotting more common but I double checked my last set of labs which measured for those antibodies (done in October 2011) and I was negative for all of them. I was also negative when I had them done in 2009 and way back in 2005. I will ask my doctors if there is any reason to think we should do them again before November but I’m fairly certain the answer will be no since even though it can change over time, I don’t think it is known to change that quickly.

If I am having “very high blood pressure” before I leave that would be a problem, but again *knock on wood* so far my numbers look great. I will pack a cuff with me if I go.

And of course, I checked with not one but two MFM’s. When I first called the office to ask my MFM he was on vacation so his partner gave me the go ahead. I saw my MFM last Thursday and made sure to discuss it with him as well and he said that he was very comfortable with it as long as I wasn’t doing anything too strenuous (guess I’ll just have to save bungee jumping for another trip haha) and with the caveat that my labs and blood pressure needed to look as pretty as they do right now.

I will talk to my regular OB about this as well at our next visit but I’m pretty sure that if my MFM is okay with it, he will be too. Still, it doesn’t hurt to run it by one more medical professional, so I will.

My point in writing all of this is to make it clear that this isn’t some decision Paul and I entered into lightly, we have done our research and given it a lot of thought and have decided that this is something we would like to do. I can’t explain it fully, but even on an emotional/mental level it feels important to me to do this, it feels like something a normal pregnant woman would do and as happy as this pregnancy has made me feel, a part of me has still grieved the “normal” pregnancy experience that lupus has robbed me of. Since my doctors don’t seem to think there is any added risks of me going, I don’t see a good reason NOT to go.

Of course, my parents have their own thoughts about this. I told my mom on Friday and she was, as expected, not happy about our idea. At all. She lectured me for awhile about how I was being irresponsible and there was no reason for me to need to go to Hawaii now while being pregnant. She did not care at all about the fact that we had put thought into this or that my doctors were fine with it, even encouraging of it (“Doctors are not God!” was her response). She had to go so we didn’t get to talk for very long about it and I was really hoping that she would accept that this was something we wanted to do and grumble about it periodically but without escalating it any further than that.

Alas, this was not to be. Last night I received a phone call that was calm for about two seconds and then in an instant I was being screamed at like a five year old. It was literally like 0 to 60 in nothing flat. I’m pretty sure she had been stewing about it for the past two days and that’s why it was like, “Hello” and then instant screaming, but it felt pretty unfair since I hadn’t been a part of the argument she was having in her head. I was basically called a bad mother for wanting to go, I was guilt tripped about never listening to her, my vacation preferences were ridiculed (“All you do is eat”), all of this in a very shrill, very loud, “I’m the parent and you will follow my orders” tone. Granted my mom is Taiwanese and so can get loud very quickly without meaning to, but I (very proud of myself) managed not to raise my voice, to wait for her to finish her thoughts and asked her very politely not to yell a few times. It didn’t really work and that’s when it devolved into the guilt trip about me never listening to her.

At one point I told her that I would agree to take her concerns and advice under consideration and seriously consider canceling the trip IF she would agree to on her end, do the research about the risks of flying while pregnant. To this she responded she did not need to do research because it was “common sense.” Hm…apparently not common sense to the medical community nor most of the rest of the world, considering how many baby-moons I’ve read about people taking. Women who have had IVF’s or IUI’s or otherwise struggled incredibly hard, for years and thrown small fortunes into getting pregnant. In other words, the last women in the world who would jeopardize their hard won pregnancies for a dangerous vacation.

Oh yes, at one point she started talking about 9/11 and how those people didn’t realize how risky their flight was. Yes, she actually went there.

I don’t mean to make my mom sound like a crazy person. She, like all asian parents, tends to get some weird ideas in their head that they cling to even in light of factual evidence that proves otherwise, but for the most part she is pretty mellow and has always believed in talking things through. She does however, have an incredibly strong tendency towards confirmation bias. She has pretty much been against EVERY. SINGLE. TRIP I’ve taken since I was diagnosed eight years ago and has advised against me going on pretty much every last one (there has been one big trip to Asia, one trip to Miami/Caribbean, two Hawaii trips, and at least half a dozen Vegas trips) but she claims that she has only twice said I shouldn’t go and that after both of those trips I had a mini-flare (one Vegas trip and one ski trip at Mammoth). I can’t argue with her that this isn’t the case, because she adamantly believes it is. So in her mind, when she has a bad feeling about me going on a trip it must be because something bad will come out of it. Except, she just forgets all the times she tells me not to go and nothing bad happens. Thus she is 100% accurate about which trips I shouldn’t go on and since she thinks I shouldn’t go on this one I shouldn’t.

Sigh.

Needless to say it was very difficult to sleep last night. First of all, it’s not like I’m completely without anxiety about a five hour flight away from my team of doctors. But I’m convinced that as long as things stay as they are, flying itself is not the risk. From everything I’ve read, the main concern doctors have about pregnant women going on trips is not the flying, but simply the not being near their care.

Immediately after that disturbing phone call, I started researching Level 3 NICU’s and hospitals in Oahu and found that Honolulu actually has the only Level 3 NICU in the Pacific Islands. It is located in a Women and Children’s hospital that has excellent reviews and I confirmed that it is considered in-network as far as my insurance is concerned. I will be bringing copies of my most recent labs as well as contact info for my entire medical team. I am also planning to call them before the trip to see if there is anything they would want me to bring if I did have to end up visiting them (which I really hope I don’t).

I’m feeling much better after finding this information, so in that sense my mom’s freakout had some positive outcomes. But I’m still really upset and disturbed by how completely unwilling she was to be reasonable, even as a tactic to try and convince me not to go. It was upsetting to be treated like a reckless teenager, determined to have a good time no matter what the costs. It’s like she didn’t hear at all about the research I’ve done and the contingency plan we’ve made (the trip insurance) and the fact that my doctors will have the final say on whether or not this trip is a go.

It was as though I was five years old and being told that I have to do something because my mom “says so” without any further explanation. I appreciate my parents concern but I am a thirty year old woman and about to be a mother myself. I think I’m old enough to make rational decisions and if my parents want to give me their input I would appreciate it if it was based on arguments beyond “it’s just common sense!” when it’s obviously not (see: medical opinions and millions of other women who have flown pregnant and been told it’s fine by their doctors).

I was telling one of my friends about this and she said the same type of thing happened to her shortly into her first pregnancy and that you just have to draw a line in the sand and remind them that they will always be your parents and you always appreciate their input but that YOU are the mama now and you and your husband get to make the final decision for baby, not them. It reminded me about EJ’s post about a similar situation with her mom (although theirs sounded more like a grown up conversation!). I guess this is just all part of growing up.

Who knew that being both a mom and a daughter could be this stressful.