It's all we have left doc

Preface: Today I went to pick up my vial of steroids from the hospital pharmacy (b/c the risk of prematurity real for me...and thus, we need to kick the lung development into high gear). Rx was there. Yay. We already made the plan with my doctor just yesterday that DH would give me the injection today and tomorrow. He does my 17P and did all my IVF. [I have an extreme fear of hip injections and lots of pains thanks to all the PIO over the past two years, so I know he does it well and the doctor was fine with him doing it. I have a routine and method that lessens the pain and the anxiety that I can do at home to get through this.] 


I doubled checked with the tech that there were needles and syringes in the bag. You know, to actually be able to use the medicine. Two needles and two syringes. That's all I needed. IM length (so, like 1 1/2"). She said, no, there was no Rx for those just the meds. Um....so, how should I administer the medicine then? She calls the doc's office (5 floors up). Talks to five clinic people. Not a secretary, but actually back-in-the-clinic people. Her side of the conversation indicates that no one will help her by authorizing two needles and two syringes for the vial of medicine already called in. They page the doctor (it's his off day). There are at least 10 other doctors in this clinic. He calls back, says for me to go to the clinic to have them do it today and tomorrow/Saturday (has to be done twice, 24 hours apart). Note, clinic is closed tomorrow/Saturday. Is he going to meet me there? Yeah, we all know the answer to that one. 


So, I give up on the pharmacy helping me and go to the clinic. I'm told I can't go past the check-in desk because it's lunch and no one is back there who can help me (like lunch ending will change that, but anyways). Receptionist says pharmacy is holding my needles and syringes hostage and no, no one will be there tomorrow to give my injection. I wait 20 minutes while they all eat and page the doctor again. Then, my doctor happens to walk right past me and asks me how I am. I burst into tears because I've been at this for about an hour and no closer to getting my two needles and two syringes. I tell him no one will authorize the pharmacy to give me these. He says, clinic will give me injection today and husband tomorrow. I cry harder and remind him that I was much more comfortable with our plan from appt yesterday. 


He stares at me, saying silently with his expression, are you (me) really going to push this? Yes, yes I am. You know why, doc....because control over who sticks a long needle in my sore ass that already gets weekly injections after weeks of daily injections is all I have left. You've already told me I'll likely have to push the kid out which is not what I was expecting, nor want. I am dealing with you all of sudden telling me yesterday the new goal was to make it at 35 weeks, while also giving me steroids thus indicating this kid actually has a really good chance of coming even earlier...far too early because of my messed up body. I've been multiple IVF treatment failure and lost triplets because of a doc's f-up and my screwed up body. I've been violated more by the dil.do cam in the past two years than my husband's equipment in the past seven years. I can't have sex for at least nine months (six months to go) thanks to precautions that had to be taken because of my messed up body. I've done everything you've asked and that I can do to keep this going so far. So yes, damnit, I am going to push this because I don't see a problem with our plan from yesterday when you already have my husband doing my weekly injections. 


The doc told me to stop crying (f-u, dude, crying is what I do best) and got the nurse to get my two IM needles and two syringes. I ran out of there. Got home, realized I didn't check the needles. Stupid me. After all that...they are 1/2"-far too short to reach a hip muscle. I'm hoping to dig up some left over PIO around here someplace now (the 17P compounding pharmacy will only give me the exact number I need, so no extra there) because remember, they are closed tomorrow/Saturday. Total fail.




Ok, so that was a totally too long preface, but here's what I really want to say to the medical community after yet another clinic battle like today: 


We newbie IF'ers/preg IF'ers/veteran IF'ers don't have the mental or emotional energy to be obnoxious on purpose. We really don't. We don't try to annoy you. We do, however, remember what you tell us and what the plan is we agreed to down to the detail most of the time. Why? Well, some of us are just that personality type. But above and beyond that, it's all we have left. We have no control over something that should be happening natural without loads of medical intervention; something that should happen behind closed doors with one other person, not in a big room with a team; something that may never happen despite putting our life on hold, our marriage on the rocks and our financial stability down the tube. So, control over following the plan that was discussed is it. It's the last, little piece of control we have over a life that is out of control, upsetting and frightening. We know the plan will change, but at least let's follow it until it does for a good reason. If you, dear medical providers, could step back for a moment and understand that and just stick to a perfectly fine plan that we all agreed on, instead of changing meaningless little details that aren't even logical, well...that would go a long way to keeping us calm and tear free.

Realistically, I've lost a few weeks at least

Totally preg related post....feel free to skip if you need to. It's kind of a brain dump anyway as I deal with all of sudden feeling very.very.overwhelmed and I just needed someone to "listen"...thus, a blog post.


Today was my monthly ob visit at just shy of 27 weeks. Everything is fine, but I left feeling like a deer in the headlights and completely overwhelmed. Last month, we started talking c-section (my expectation since UU was discovered years ago, as I was told by a number of docs that kid would be breech. period.) vs. pushing the kid out (since this kid is actually head down, not breech like was expected). Today the discussion came up again--and which was better for me and for kiddo. Doc stated b/c kid was likely to not flip around at this point (not enough room) and thus stay head down, from what we know right now (position wise at least), it will not be a situation that is decided for me (e.g. breech=c-section. decision made). Dang it. Now, obviously things can happen that will still lead to a c-section, but he's just saying that right now we aren't looking at anything requiring a scheduled one. In terms of what's best for me and the kid, well, the literature is split--you're screwed either way as far as I read (or in his words, there are pros and cons). Both have benefits and risks. Both have the chance of uterine rupture now or for future pregnancies (yeah, I have no hope for that, but still something to consider I suppose). There is very, very limited literature or even personal experience reports of UU's pushing a kid out...probably b/c if they get preg easily (never requiring HSG), then they very well could have pushed the kid out and still have no idea they even have a UU...thus, no literature and the UU's that are known about seem to have been documented as requiring a c-section b/c of breech presentation.


Blah blah blah. So what does all this mean????


Well, basically, we are going to wait and see and play it by ear. I'm ok with that. The part that has rocked my little world is that this whole time the doc has been saying he thought I'd make it to Christmas time (38-39 weeks)...and if we scheduled the c-section, it be then. Today, he said he doubts that I'd make it that far. This is much more in line with UU expectations and what we've been told by other docs (who quite frankly are shocked we've made it this far). No, nothing has changed really that made him say that--except maybe the twitchy uterus experience that took me to L&D within the week or so. Really though, I think he was holding out high expectations as part of mental encouragement, if that makes sense...like when delivery whenever was really far out, tell the patient they can go all the way so they don't get it in their head they can't. I'm good with this. I have no doubt the placebo effect exists, and it was far out so encouragement for me was good. Now that the time is sort of nearing, he's being more realistic so I can wrap my head around that. I'm good with that too. I've known all along that I very, very likely go early--I mean, my own personal goal this whole time was to make it to Dec. 1. The doc saying I'd make it to Christmas made me roll my eyes, but also did it's intended purpose--has made me think I could go that far and worry obsessively about one more thing out of control.


So, what's my deal now that he's saying Tgiving is more realistic? Well, I guess hearing a doc say that does make it more realistic. And all of sudden, I feel like I'm running out of time. Running out of time to be pregnant which makes me sad. And running out of time to actually start getting ready should we bring this kid home (yeah, there's still an "if" there for me). Each week since viability, we've done one thing to get ready. Bought a stroller and booked a newborn photographer. There's no shower, so no registering has to be done, but we planned to around 30 weeks. There's no nursery, so no decorating needed. NOTHING IMPORTANT though has been accomplished/bought/lined up....like, oh, I don't know...sleeping place (e.g. crib), carseat, pediatrician picking.....And now, I maybe be looking at only another 7 weeks. What?!? At least kids really don't need that much to come home...like those three things should really take care of it in all reality.


Again, I really did expect this. As much as I expected to make it this far I guess for whatever that's worth. All of this is fixable, but today, I am stuck staring at the wall and feeling sad (this is almost over; I really like being pregnant) and overwhelmed (where do I even start and wow I feel alone to deal with all this) and scared (pushing the kid out was never, ever on my life bucket list...and yes, an elective c-section is still an option; I just like it when decisions are made for me about these sorts of things).


Seriously, what a great "problem" to have.


I think I just need to breathe. And maybe make a list. And put L&D's number in my phone.

I'd be shocked

Honestly, I'd be shocked to come with a living baby at the end of this year. There, I admit it.


Things are going smoothly. My doctor looks confounded by this. Of course, there was a brief visit to L&D a couple of days ago for contractions (let the fun begin, UU!). Seems the dil.do cam u/s that morning to check on my cervix and cerclage made my irritable uterus...well, irritable. [Note: dil.do cam u/s's suck before being pregnant and cause actual (more?) pain when preg since that space is occupied now and is never utilized (as bed fun on hold until after deliver)...I thought I was done with them after leaving the RE's, but turns out that's the only way to see the stitch and most accurately measure cervical length.] Anyways, a few hours after the u/s, right after we got home after lunch, the contractions started and were about every 8 min and about a 6-7 on the pain scale (like, breathing through them was required...too bad I haven't had a class on that quite yet). A quick call to my clinic and we were off to my first L&D trial run. Four hours of monitoring and down to mild, irregular, non-painful contractions (aka Braxton-Hicks contractions, which I've been having for weeks) I was released home. We assume that my cervix never dilated at all since they said this would have caused bleeding with the cerclage in place and I had none; since sticking stuff up there was the cause of the problem in the first place, we all voted to not actually check this. Needless to say, from now on, I'll be boycotting internal u/s....they can check cervical length with an external u/s, and since mine is holding steady in overall length, we can't understand why they need to measure it from the stitch. Now, if it starts to shorten overall, then I get why they need to measure from the stitch b/c you can shorten all the way to said stitch, but until it changes, let's try to keep my irritable uterus a happy camper.


Other than that, though, things are going smoothly. So now back to my original statement. The more I start to do a few things to actually get ready for this kid, the more I feel like I am "playing house". Like planning a wedding with no engagement ring. Or house shopping while being unemployed. Something along those lines of ultimate denial. I mean, we aren't doing much in comparison to most people. We have no nursery to decorate, just a small corner of our room. And I'm not having a shower since we are far away from friends (and I loathe showers), just a meet-the-kid-get-together in the spring when we can travel to our home state. But there are still a few things that I've taken the leap to do. Like today, I talked with a newborn photographer and emailed a birthing class teacher (in case I don't require/vote for a c-section...a post for another day about that impending decision). But the whole time, while setting these things up, I can't actually fathom having a kid in a few months. Here. At home. To care for. I mean, we celebrated viability with a stroller purchase while they were on their annual sale. However, I had to buy it from a place with a long return period and have yet to actually open the box. Because I can't believe a kid will be here to use this in a few months.


It's a bizarre feeling that I'm sure is totally related to IF, reading blogs who have been through late loss,  and probably also to the second half of pregnancy risks of a UU (almost as rare as unicorns... ;) )


I don't think it's something that can be fixed...I think it's more like something that will fix itself should we actually bring said kid home. But I just wanted to tell someone about it. And no one IRL would even start to get it. Maybe you all will. And maybe you can relate and will know you're not alone if you are having this bizarre thought pattern too.

i wish someone had told me this

While spending time on the pintrest, I came across a saying that I want to yell loud and clear to the IF community (including myself over the past four years). Too often, I see people say that are "giving up" when they jump of the child-seeking track to regain control and calmness in the lives. I hate those words--"giving up". Anyone who has even set a foot on this never ending roller coaster of attempting to bring a child into their lives and then CHOOSES to stop is not a quitter. No way. To stop is a decision they've made, barring certain circumstances that force their choice (though that isn't quitting either), to CHOOSE to go another direction. I'm not talking about being totally out of options medically and financially--that's a different sort of hell. I'm talking about doing everything to the very, very end because pregnancy has become a goal to be accomplished, losing sight of the ultimate desire to have a child, and along the way sacraficing everything for that *goal*--including our marriages and our sanity and our selves. Feel free to disagree--this is just how I saw treatments affect us. This saying I found especially hit me given a recent request by a friend of what advice I had to give as she and her DH go to their first RE appt after multiple loses over the past year or so. Maybe she was looking for specific test/medical advice. I don't know, but I know I'm not her doctor (and she's going to a very good clinic) and didn't need to arm her to be "that patient" on her very first visit, so instead I chose to go the route of "sage IF veteran wisdom" type advice (at least that was my hope of the content I gave her...you may disagree, and that's ok). Along with the saying, here's what I had to say to her that I wish someone had drilled into me before setting foot in the RE's office--

Source: fanpop.com via Jennifer on Pinterest

1) Educate yourself to a point. You want to be informed about what tests are looking for and what results mean, but not to the point of insanity and trying to know more than your doc which is really easy to do. So, be educated enough to know when to ask more questions, but not so overly "educated" that you begin to second guess every single thing your doc does. Every RE is a bit different and medicine is an art not a perfect science so you can always find things on google and other's experiences that will contradict your treatment plan. Thus, know enough to inquire about why something is and isn't being done, but don't lose your mind trying to become a self-trained RE.

2) Remember that you and your husband are ultimately in control of what steps you take. Going to the RE is like getting on a roller coaster and it can be very hard to step off should that point come. They will not help you with this, so you have to stay strong. While you may say certain things are off limits "forever", I don't think that's the sort of thing you can completely hold to until you get to that point in your journey. So, basically, be strong and flexible at the same time in your treatment willingness. Recognize the difference between things you'd rather not do, things that scare you right now and things that are completely out of the question b/c of your moral/religious/ethical convictions...RE's have nothing off the table, but a good one will stretch you while respecting you if that makes sense.

Season of isolation-"normal" or not?

Like many others I'm sure, I feel there are seasons to life. Not just mood changes during the day, but longer periods of time when I crave different things. Some are more social seasons--I just want to be around people, and I hate being alone. My current season is the opposite--it is a season of isolation--well, in being isolated with DH. I'm not depressed. I've been depressed, and this feels totally different. I still have great interest in doing things...just in doing them only with DH. I still have very joyful moments. I still want to get out of bed each day to tackle various activities. This feels not so much like I want to crawl in a hole, but more that I just want to pull inside of my marriage, pull up the draw bridges and keep others far for now. I guess it's the same thing, maybe just a more positive versus negative connotation.

I've tried to figure out why I have no desire to seek out social functions or accept invitations. I think part of it is the heat. I am not a hot weather person, especially when walking everywhere is my main mood of transportation. Part of it is my dog's failing health (we were on an up swing...that ended a few days ago when he took a nose dive hip-wise).

Mostly though, I think it's the fact that all through our IF treatments, I was very open with everyone around me for the most part. Not so much as we did more and more IVF cycles in terms of cycle status details, but still very proactively talkative about it all (oh my gosh, the number of people in the world that know I have half of a uterus...I know I told way too many people way more than they wanted to know). I guess I sort of feel that I was so open about all of that very private stuff that I just want to be very private about this side of journey now. After having our marriage, our sex life, my cycles, my periods, my body, his collections, his fluids allllll on display for mulitple medical teams...well, it's time to take us off display.

This has manifested itself in a few ways.

First of all, I hate talking to people, especially random people or acquaintances out in public. After suffering through many overly talkative preg persons over the years, I very much don't want to be that to someone else around me. And selfishly, I don't want to hear their well intentioned but usually misplaced comments (Of course you can have sex during pregnancy...you're doc is wrong (unsaid: even though my law degree has taught me nothing about your medical situation or high risk pregnancy). So, I won't bring up the preg or the kid, and if asked anything, I try to vaguely and quickly answering before asking the person something about them to change the topic. Most of the questions are:

1) How are you? Doing fine, thanks.
2) Do you know what you're having? A child. Should we choose to find out, it will be for us to know. Not my mother and especially not you, sweet random stranger. Because again, we are talking about something inside of me. And my insides are now off limits.
3) Oooh, is this your first? It's the first time we've made it this far. (Note, this is not said in an effort to ellicit sympathy...this is my personal way of honoring what we've been through, not forgetting our first babies-the triplets, and trying to "normalize" pregnancy loss in society so others can feel more comfortable about it if need be.

Second of all, I really really hate being asked for updates by those closer to me. Again, this feels so intrusive about something that is so personal to me. It's even worse when those who were not at all interested in our IVF cycles (read: my mother) seem to have decided to show up to my medical life now that the party is gettin' good. Sure, I'm glad she's excited. But I don't feel like being all gushy-preg talking with her now. Or with anyone. My best friends and family are quite annoyed with my lack of offering constant updates, symptom complaining and especially with my lack of offering ultrasound and bump pictures (none have been taken of the bump and the u/s ones are of my insides, so yeah, those are private), and they are all about to fall over themselves with frustration at our lack of gender reveal. Again, we are talking about my insides. And that topic is officially off limits. So, please people, get another hobby.

I'm really not trying to be a jerk. But I just can't open myself and my marriage and our private journey up again. I just can't. Not when I know they care but are also just plain curious ("What do you look like?!?!" Google 20 weeks....I'm sure there are bump pics you can examine. "How will I know what to buy it?? I need to know the gender so I can go shopping for it??" No, no you don't. I like yellow and green. And I hate lots of baby clutter. We live in 700square feet. You do not need a head start. Plus, nothing baby is coming in the apt until said baby comes in the apt.).

Of course, my behavior and lack of wanting to spend every.waking.moment discussing this kid that could still not make it home has been interpreted by my grandmother as, "Does she (me) even want this baby?". Yes, yes, that's what she said to my mom a few nights ago. Now, I don't totally fault my grandmother for this comment. She's old and we all know you can say whatever hurtful crap you want when you're past 85. Sure, it sucks, but we all put up with it for the most part because telling off grandma is a quick pass to hell. So, fine, say whatever you want behind my back. Who I do fault for this comment finding my ears, though, is my mother. She should know better than to pass along something that would be hurtful to any IF'er. What the heck was she thinking telling me this was said. Needless to say, that total lack of judgement, along with her own slightly more indirect questioning regarding my excitement level since I don't oooze pregnancy complaints around the clock has more or less cut her off of any details I am willing to divulge.

I'm not on display anymore. I will guard myself and my family against as many sucky comments as possible. And I will no longer discuss the details of what's going on inside of me.

But maybe...maybe this is just my justification for wanting to be left alone with my DH (who is finally home more often after years of overworking) to quietly and calmly enjoy each other and day we make it further, while savoring time with my best fur buddy. Maybe this isn't normal? Maybe I should be passing around pics, buying billboards to announce updates and which variety we are having. I mean, I feel excited, though cautiously so, and do some browsing for a few things I'd like to get for it even buying a couple of things as we hit milestones, and dream of how the three of us will spend our time together...but maybe the lack of public display of preg ooze really is a sign I'm not truly excited and I don't even know it. I mean, I haven't been through that much in terms of pregnancy loss, I didn't go through IVF to get this far this time, and while I am realistically high risk, things are going okay so far...so maybe I really need to get off some invisible soap box and act "normal"??

If I feel fine and excited but everyone else says I'm not....who is right?

Thoughts, insight, arguments are welcome by anyone who read this far.

cerclage fun

Today I got a dil.do cam ultrasound and an ass progesterone shot. No, you didn't miss something. My cerclage placement and high risk of preterm labor (both due to my unicornuate uterus) deems the following things necessary (many of which I wasn't totally informed about when I gave "informed" consent....not that it would have made a difference, but it would have been nice to know up front (maybe??), so I'm putting it here, so if you any of you need one, you'll know what to expect too):

1) Every other weeks ultrasounds. Via vag u/s. That (the u/s location) was a surprise today when I was told to take if off, as last week, they didn't check it that way (last week was done by the doc, this week was done by the u/s tech with no doc in the room). I was told nothing is allowed up there for fear of infection and irritating the cervix, so I'm confused and will be asking why the difference when I do see my doc in two weeks. Anyways, sure, the frequent u/s are sort of reassuring (actually, they are stressful because they break my ability to be ignorantly blissful that all is well...sure they prove that all is well, but at any moment, they could also prove that all is hell too). And, vag u/s normally wouldn't bother me at this point, but they are far more uncomfortable with my current occupant and the current occupant twinged and spasmed for a while afterwards after I got home. Which freaked me the heck out. Yeah, that can't be good. This, too, will be brought up when I see the doc in two weeks.

2) Every week "hip" (read: ass) progesterone shots. Not PIO, but a lower dose, longer acting (thus, weekly) progesterone known as 17P (brand costs $1500/wk...luckily it is still allowed to be compounded since the drug company totally jacked up the price so it's only $25/wk for the compounded variety). Anyways, I produce enough at this point on my own so it isn't replacing it like it has to after IVF retrieval. Instead, it's there to boost the levels just enough to keep the uterus calm and make it able to stretch better in hopes of delaying preterm labor, especially as my risk of loss in the second trimesters is a crazy high 40% due to the kid running out of room in such a smaller living establishment and the natural stretching ability being exceeded to accomodate continued growth.

3) No playtime of any sort. Outside in the form of exercise or inside in the form of bedtime activity. Since I'll likely go into labor in the low to (hopefully) mid 30 week range with the cerclage still in, there will be no time between removal (usually 37 weeks) and delivery (say, 40 weeks) to have some bedtime fun. After a ten month hiatus, should be a fabulous late winter/early spring (and hopefully no sooner b/c sooner means something went pretty not right)! Of course, after the dil.do cam got covered by a con.dom and allowed up there without hesitation, we would both like to know why we can't do the same to DH (not that it was at all comfortable...but anyways).

So there you have it. The cerclage rules (which do vary by doc...medicine is an art guessing game not a science). Happy to oblige, no doubt, just not always a fan of finding these things out during or after the fact. (And I did ask about some of these things...so, for example, while I knew to expect frequent u/s, they failed to mention the type they'd be. It's so not a big deal, my little psyche just was a little surprised and unprepared.)

the varying levels of confidence

So, yesterday, a fb friend announced her pregnancy with this little line: "Sammy will be a big brother in December."

Now, the announcement itself didn't really catch my attention because Sammy (who was unexpected...not in that, been trying for years, holy crap we're knocked up kind of unexpected way, but in that oops...i thought pills prevent not enable....kind of unexpected way) is two, so I sort of figured another might be on the way soon (because that's what fertiles do right?).

Anyways, no, the thing that got my attention was her use of the word "will". Such confidence. He WILL be a big brother. Oh really? My immediate thought was, "That's bold. Shit happens. Good luck with your "will"." Sure that isn't nice, but I said it was my first thought. I didn't actually type it. My next few thoughts were this (ok, still along the same lines). She hasn't reached medical viability yet (does she know about such a milestone?), and of course, medical viability is still no guarantee. Heck, read around the blogs long enough, and even full term isn't a guarantee.

So, back to "will". Sure, most people say that and assume that. Sometimes they assume that because they have to...like this has to be the take home baby because losing yet another one or losing this first one after so much pain and work is just not something their brain can even venture towards without total destruction. Sometimes, though, they assume it will all turn out okay because they know no different. They live in this slice of earth where they and their friends have had easily obtained, easily survived pregnancies with cute, living kiddos on the other end. Their slice of earth no doubt has IF and pregnancy loss, but those people are silent or are not acknowledged. Therefore, they still have the confidence in the goodness of the world and the sweetness of pregnancy to use the word "will" for something we all know to be one of the biggest miracle/luck/illogical happenings in life. Again, friend, good luck with "will". I'll take my "hopefully, maybe, possibly" and my huge load of absolute, fall on my face, gratefulness because I know "will" is not inevitable. And that's ok.