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.
9.30.2011
9.29.2011
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.
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.
9.22.2011
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.
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.
9.08.2011
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--
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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.
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.
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