not what was supposed to happen

I’ve been meaning to post about all the Things that have been happening in my life. Going back to full-time work (not totally my choice), finding a preschool for T, T and all the awesome that is T, and hand-wringing over whether or not we go for #2.

But that isn’t this post.

This post is about how the universe is a real motherfucker sometimes.

My best friend, this girl I grew up with, this amazing lady who has stuck with me through my worst moments, just had her baby at 29w.

The details are not really mine to share, nor do I know very many of them anyway, but without going into all that, I’m just going to say that I’m pissed. I’ll admit, I was a little jealous because I really believed she was going to have the easy conception, pregnancy, delivery, followed by adorable and super-smart baby. And you know what? I WANTED to be jealous of her, because I wanted her to have the storybook pregnancy because she deserves it.

And now instead, she is joining that club that you never really want to join, the NICU mom club. The last thing I ever wanted to see was her join this shitty club full of incredible women.

I guess I just can’t resist making it about me but it’s late and I can’t sleep now. Getting that phone call, hearing about what had happened, it set off flashbacks. The panicked feeling in my chest has yet to subside.

The baby will be okay. The baby has to be okay.

brought to you by it’s too late for this

Holy crap it’s late. I drank a large matcha green iced tea way too late in the afternoon and I’ll pay for it tomorrow morning as I try to drag my tired bum out of bed.

It’s been a seriously long week you guys. A lot of things happened. Most of which I went get into much detail about because it relates to the J O B. Long and the short of it is bye-bye 5 day work weeks. But I do get to keep my job and my new team rocks and sound like they will be flexible with me in terms of hours and time off. So this could all work out for the best, it’s stressful for now though because I. Hate. Change.

So. Much.

But change is happening and I can’t do much about it. The thought of having to roll my ass out of bed and go into the office 5 days a week is painful. But there are worse things. And we did leave open the chance that we can revisit going back to the 4 day schedule down the road. So I have a light of the end of the tunnel I guess.

This coming Monday will be my last one off for awhile ūüôĀ Hopefully I’m able to settle into my new role quickly so that I can justify taking time off here and there again. And I hope my body can hang with the hours and stress.

telling stories

As you may or may not be aware, a little show called How I Met Your Mother recently aired its series finale after running for nine seasons.

Truth be told, I was ready for it to end a few seasons ago (Paul gave up on it awhile ago but did watch the finale with me), the storyline seemed to be wandering (although given the ending everything must have at least been broadly sketched out beforehand?) and I hated Barney and Robin together.

Anyway, (and consider this your spoiler alert, but if you haven’t watched it by now you have probably been “spoiled” already or you just don’t care, in which case you probably haven’t read this far and are about to miss out on my deceivingly-entirely-not-related-to-HIMYM post about to follow), I know a lot of people didn’t like the ending, but in light of the¬†Dexter finale (nothing could be more disappointing than Dexter becoming a lumber jack) and my long standing disappointment with the last few seasons of HIMYM, I actually felt okay about it. ¬†Barney and Robin’s divorce made sense. ¬†And it also made sense that the only thing that would truly settle down Barney would be a kid. ¬†And despite the last season being all about Barney and Robin’s wedding, and finally introducing us to Ted’s wife, it was, in retrospect, completely building towards Ted and Robin ending up together, the story¬†was, as¬†Ted’s daughter points out, all about Robin.

I think that is what was interesting about HIMYM to begin with. ¬†The concept of how every “story” in our life eventually ties together at the end to lead us to where we were always meant to be. ¬†And that we can’t get there at all without having lived all those other stories first.

A few months before I got pregnant with Titus I was actually trying to write the story of how Paul and I met.  I think I got about 6,000 words and two years into a story that spanned about four years and the finale of HIMYM made me want to finish it.  Of course when I went digging through my drafts I found that at some point I must have gone back into the draft and improperly saved and wiped out the whole thing instead of saving it.


This is me, officially attempting to begin again. ¬†You know how the story ends, but perhaps not the rest of it…

(I am actually really dreading hitting “publish” right now because there is a high probability that I won’t follow through, will start to write it but never finish, and this post will be out there mocking me. But I guess if I don’t at the very least post this, the likelihood of actually finishing drops even more…anyway…assuming I’m the only one who really cares, apologies to future me if you now can no longer remember the whole story (this is likely since I am already forgetting things that happened in high school, it is only a matter of time before college gets deleted as well))

is this thing on?

I have no real explanation for the long silence here. I wish I could say I’ve been busy doing productive and brilliant things.

Instead of, you know, what I was actually doing, i.e. watching all 180 episodes of Desperate Housewives on Netflix. And most of the documentary section.  (Let me know if you want recommendations!)

And now you know the entirety of what I’ve done with that precious time called “nap time” for the past several months.

Outside of naptime, life has marched on and as the old cliche goes, I can’t believe how fast it’s going. ¬†I really can’t.

The last time I posted here, T had just started crawling.  Now?  He is fourteen months old (yesterday) and his preferred mode of movement is walking though he is still a little shaky.  Yesterday we took him to Chrissy Fields for a barbecue and he was trying to run (which he did but only a few steps before falling on his bum, then repeat, repeat, repeat).

He started walking a couple weeks ago and amazingly, I managed to be the one to catch his first few steps. ¬†And the day he really started to do what we considered “walking” was a Sunday so both Paul and I got to be there for it!

I’m still working four days a week and it has been such a blessing. ¬†I don’t know why but there’s something that feels special being able to stay home with him on a weekday. ¬†I guess it’s knowing that times like this don’t last. ¬†Pretty soon he’ll be in school and even if I’m home he won’t be for the most part…so I’m really enjoying the extra time I get with him.

Not only is T walking, he is starting to say a few words! ¬†Most of his words are Chinese because that’s what my mom speaks to him and I try to say the words I know he knows in Chinese to him too. ¬†So far he can say “mao mao” which was his first word and means cat. ¬†The most surreal moment happened the other day as I watched him toddling down the hall after the cat calling at “mao mao, mao mao” – it occurred to me then, holy crap, I have a real toddler here.

He can also say “bao bao” which means “pick me up” in Chinese. ¬†He’s managed to attach proper nouns in front of this useful verb and will say things like “ama bao bao” to my mom (grandma pick me up) that generally just can’t be refused by his intended target.

Other words are, “ne ne” (milk in Chinese), “dyo” (throw in Chinese) and his most favorite word of all, his only English word, “apple,” which he uses to refer to anything round. ¬†Yesterday we were at the market and he was calling all the cantaloupes, watermelons, oranges and apples, “apple.” ¬†He also refers to balls as apples.

He got his first professional haircut yesterday and he was so good. ¬†He didn’t cry at all, for the most part he just sat still and played quietly with a toy while the lady snipped off his mullet. ¬†It’s strange being able to see the nape of his neck again.

T is starting to have a little bit more “stranger danger” as he gets older, but for the most part he warms up to people so fast that it surprises them! ¬†The developmental specialist came to see him the other day and he was clinging to my leg when she first walked in but by the end of the hour he was walking to her and giving her a hug when she stood with her arms out towards him! ¬†That’s just the kind of boy he is, super friendly, outgoing, and loves to give out cuddles! ¬†He is still a major flirt whenever we take him out to eat.

Anyway, I think naptime is going to end soon so I should probably go get myself ready for that. ¬†I think I’ve run out of interesting or even quasi-interesting things to watch on Netflix so I’ll try to make a habit out of posting here again.

why do i ever leave this perfect little island?

I’m writing this as I sip a strawberry guava mimosa on the last day of our Hawaii trip. Paul and the baby are napping in the bedroom and I’m enjoying some quiet and the ocean breeze.

This trip could not have gone any better. We had SO MUCH TIME to just sit around as a family and soak in Titus’s baby-ness as he discovered this whole new world. He started crawling here. And we both got to see it and revel in it and even got a video of it (ok, ok, the video may be of the second or third time). He arrived in Maui, a mostly not mobile baby but that is not how he is leaving, oh no, this kid is now what you would call fully mobile.

I know he won’t remember this, but it doesn’t matter because Paul and I will. Much like his first Halloween costume, this has been for us, not him. He has enjoyed it for sure, but we know he won’t remember this and that’s fine because that was never the point. The point is we got to see him play in the sand for the first time. Sit in the ocean and splash his hands around in the water and smile as he felt the sand between his fingers just before he jammed a handful of it into his mouth. We got to feed him yummy fruits and new foods and watch him flirt with maybe literally every woman on the island. We even noticed his MO, he actually looks around and picks out his target of who he is going to make smile at him! It kind of reminded me of Barney Stinson’s “Challenge, accepted!” And his success rates were unsurprisingly high given how adorable his little smile is.

And apart from how amazing all the T-time, it’s just been a great time. We opted to stay in a condo this time so that we could still have a little bit off freedom after T went to sleep (especially given the 2hr time difference) and were upgraded to a nicer villa with a gourmet kitchen and overall nicer finishes! Then we found a restaurant supply shop that also has a small retail shop and got steaks and FOIE GRAS. I.e. the most delicious thing ever banned by the state of California. Where we come from.

We were also able to go to a TON of restaurants even with T in tow and he was mostly so well behaved that both of us were pretty much able to eat our entire meals with him in a high chair every single time. Of course we still have a couple more meals to go so I may be jinxing us right now. Especially since our plan is to get him to bed in his car seat tonight so that we can bring him to an after 8pm happy hour nearby. Hmm…

ripped away

So the last few days have been a bit of a roller coaster. A very slow, very predictable, but very unpleasant roller coaster.

On Monday I visited Dr. Kidney who seemed only slightly put off that I have yet to completely wean T or start any of my meds as had been agreed upon during our previous visit a month earlier. He understood that between T going to daycare due to my mom (his primary caregiver during the day) off in a foreign country for two weeks, it was just not the greatest time to deny him the b0ob.

The plan then became to finish weaning T, stat, like in the next few days and switch meds and then see him in 5 or so weeks.

Well, yesterday morning when I woke up, I woke up with a raging headache. I took my blood pressure and it said 169/105. And I freaked the f*ck out because, um…169/105. There was much googling of hypertensive emergency and crisis and the conclusion of my google-ing is that I was close but not quite at the cigar. 180/120 seems to be the “GET YO ASS TO THE HOSPITAL IDIOT” threshhold and I was not quite there yet. So I just cracked into the supply of blood pressure meds that my doctor had been urging me to get onto and realized that this was it. I was unceremoniously giving up breastfeeding because I was suddenly terrified of stroking out at work. Legitimate, but I still felt pissed and depressed that it wasn’t under MY terms.

Anyway, my numbers have gone done steadily (spoke with Dr. Kidney last night and he said I should be much better by today.

The baby seems mildly upset. There are times where he clearly wants to nuzzle into my chest and these moments make my heart shatter and break into a million tiny pieces because…I…..can’t. Wahh.

But really, other than that he seems totally fine. Because let’s be honest he’s a happy little dude and not much seems to bother him. Except eating. Which he seems to now hate with a fiery passion. But that’s a related post for another die.

Brain dump

Hello blog. So we meet again. I have much to tell you and no coherent way to go about it so I’ve decided that once again the best way of doing this is probably just to do it and not worry about it flowing or sounding nice or, um, maybe making sense.

  • We had our first visit with the high risk development clinic this past week. It went well and we should get the written report in 2-3 weeks but preliminarily everyone we met with was very happy with where T is at right now. He was called a flirt multiple times and he laughed and smiled his way through pretty much the whole thing. The kid is a social butterfly and Paul and I are constantly wondering where he gets that from since we both skew towards being introverts.

    Despite the fact that it went well, I came home from the visit with mixed feelings. It wasn’t really about how T did (because like I said he did great) it was more The Feelings it stirred up about our NICU stay and how sick he was during those first few weeks of his life. I actually found out something that I did not know, and looking back, am glad I didn’t know, was part of his diagnosis. He had something called DIC which is a complicated medical thing that I don’t fully understand except that it relates to the body completely being unable to clot on its own and that a disturbingly high percentage of people who develop this (extremely rare) condition die.

    I knew he was sick. I knew he was very sick. But I don’t think I ever fully let myself understand that we could have lost him in those early days. I can’t even think about it without tears coming to my eyes and my heart jumping into my throat.

    The social worker we spoke with talked about a Stanford study about PTSD in NICU parents. And yes, I can see that. I can feel that. It’s not with me every moment of every day or anything like that but there are definitely times when I hear a story, smell a smell, see something and I am gripped with terror or sadness. I think when you’ve had a traumatic NICU stay (is there any other kind really?) it just stays with you forever and it’s never going to go away. I hope that none of it stays with T because he was so small and can’t remember any of it as real memories, but I do often wonder…are there aspects of his personality that will be forever colored by those first few weeks when his life was completely atypical of the majority of babies in the world? I guess I’ll never really know.

  • My own health has not been great. I’ve been weaning myself from the pump these past couple weeks and plan on working on T’s nursing sessions over this next week. Maybe if I’m feeling ambitious I will write a post on exactly how I’ve been doing that. The goal is to be done and switched meds by the time I see Dr. Kidney again on 10/21. I think my doctors would have liked it if I went cold turkey with nursing and just started the meds already but I GTS (googled that sh*t), which was obviously a bad idea, and found all these sites saying I will Traumatize The Baby if I don’t ease into it. So in the meantime I just pray I’m not doing any serious irreversible damage to myself. My blood pressure sucks but it’s been somewhat stable in terms of the suckage. So got that going for me?
  • The silver lining of this flare (yes, it’s a flare, I’ve given up trying to pretend it’s not) is that it pushed me into talking to my boss about working four days a week instead of five and he was amazingly supportive. Like I wanted to hug him but it wouldn’t have been appropriate – supportive. Not only did he talk to HR and the guys I work for directly about me going part time, he also told me to start coming in a half hour later at 6:00am, which may not sound like much but is HUGE at that hour of the morning. He said if I don’t think it’s enough he would even be willing to look into job sharing my position. Amazingly. Supportive. I start my new schedule next week and I’m excited! I feel SO blessed and so lucky to be working for such an incredible boss and company.
  • And now for the good stuff…T is growing and developing by leaps and bounds. I am annoyed at myself that I’ve been so bad about documenting it all. He has one ridiculously adorable tooth that finally came through a few weeks ago with pretty much no fanfare whatsoever. It was just like “oh hey, I has a tooth now guys” no real fussing or anything. It’s the bottom right in case you were wondering. His top gums look pretty swollen so I think maybe those will be next. He also finally started rolling both directions and now rolls as his method of transportation. He’s also quite a fast tummy pivoter too but just hasn’t quite figured out the crawling. It’s so cute how pissed he gets when a toy is just out of his reach because I think mentally he *gets* how to crawl but he just can’t physically do it yet. T has NO social/separation anxiety to speak of. When we drop him off at daycare he’s like, “see ya later!” and the other day when I was at Dr. Kidney’s office, I left him with the nurse while I gave a urine sample and I could hear him laughing his little head off outside with no regard at all for where I was or if I was coming back. People tell me this is a good thing and that it means he’s well attached, so I try not to take it personally. He does know who I am though because he recently started reaching out for me to hold him once I get home from work and my mom brings him to the door to greet me. I should really do a whole post on him soon. Maybe with my extra day off!
  • Unavoidable

    Pecking this out on my phone so it may not be long. Or complete. Or edited. But I figure I should update since a decision has been arrived upon and all that good stuff.

    I saw Dr. Kidney yesterday and he concurs with Dr. Joints (my rheumy) that I should go back on Cellcept for the time being. He wants me to begin the weaning process so that I can switch meds before I come back to see him in a month. He also wrote me a ‘script for a new blood pressure med because he wants to get that under control as well.

    Basically I’m on a shitty trajectory and the medical folk would like to get things under control before it all spirals to hell as it is wont to do. So that’s that.

    On the work front I am trying to muster up the courage to talk to the boss man today and ask if it would be possible for me to work out a flex time arrangement. I think I will be candid with him about my current shitty health. I hate that in my mind it sounds like an excuse, because really it’s not right? I can’t feel like I’m being lazy because I’m unwilling to work myself into an early grave…and yet for some bizarre reason I do. Must be the Asian guilt.

    bitch is back

    I am feeling particularly tired and emotional tonight. My body is tired. And my brain is tired about thinking about my body and why it’s so unwieldy and uncooperative.

    My body hurts. From my back to my fingers to my freaking teeth. Yes, my teeth hurt.

    Not a good sign.

    My blood pressure is a mess and my rheumy wants me to go back on blood pressure medication, but I think this would mean I have to wean T. As much as I can logically appreciate the benefits of the end of breastfeeding, the emotional side of me is a blubbering mess about it. Truthfully, our breastfeeding relationship has been at best, a love-hate relationship, but even so, the idea of having to stop now, before we are really ready is a bit gut-wrenching Probably more than it should be. But it feels like once again, a decision is being taken out of my hands and forced on me by my lupus.

    Unfortunately as the days tick by and my health deteriorates, I may be running out of options very soon. My blood pressure has gotten scary high at certain points in the last few days and the fact that work has been extra stressful this week has sometimes made me wonder if I could be that urban legend of the person who drops dead in the middle of a stressful moment in the office.

    Today I found myself making contingency plans for what happens to Paul and T if I suddenly die.

    And so I know that if I have to give up breastfeeding, I have to. Because ultimately I have to be alive to be T’s mommy.

    So yeah. I’m praying for a miracle but if nothing changes in the next couple weeks then I will have to make some changes around here.

    hey jealousy

    The other day, as we walked past the park on our way to get some gelato, my eye was caught by a very pregnant woman sitting serenely in the middle of the grass. There was a man holding a baby, they were playing, pretending she was an airplane as he lifted her around. It became clear that the baby and man belonged to the very pregnant woman and in that moment I couldn’t help it. A wave of jealousy washed over me.

    Her daughter, barely walking, couldn’t have even been close to two yet and this pregnant woman looked like she was about to pop any day now. Of course, I don’t know their story, but in my mind, in those ten seconds I watched them, I created an entire narrative of a woman who had gotten easily pregnant both times, sailed through blissfully, had her perfect birth experience and was now on the verge of her next perfect birth experience.

    As I looked down at my sweet, beautiful, perfect T, I couldn’t figure it out. Why the jealousy? What is it that I want, that makes me feel this way, when really I’m pretty content with my life as it is. What is it about seeing a pregnant belly that brings out the irrational green eyed monster in me?

    When I think about it rationally, it’s not so much that I want to be pregnant right now or that I want another baby right now. It goes back once again to all the shit that hangs over me, all the crap that must be taken into account. All the doctors that must be consulted. I am jealous of the ease with which other people can move forward in their life.

    The truth is, I don’t even want to get pregnant yet. I want more time to enjoy T’s babyhood, to immerse myself in being amazed by him every moment I’m with him. I think ideally I’d like him to be about two years old by the time the next baby is born, which means we still have almost a whole year to think about this.

    But unfortunately my body is a piece of shit. My experiment of going off my meds has failed spectacularly and my numbers are trending in a bad way. I self-diagnosed and put myself all back on my correct dosages but will it be enough? Will I have a bad flare? Will it push everything off again or will this time be the time they say, don’t do it. Be happy with the one we have. The perfect, adorable one. Which I could be happy with. Because how could I not?

    But also, he is so friggin perfect, how could I be happy not having more?

    I know this nothing more than the behavior of a five year old, but I want to stomp my feet and throw myself to the ground and scream about how unfair it all is. Unfair that other people’s bodies don’t fail them like this. That other people can live the lives they imagined for themselves. Two and a half kids, white picket fence and a yellow lab .

    And me, I don’t know. Just trying to stay healthy. To keep myself going every day. To not do things to set myself back. Stupid lupus.