The early moments of a miracle

Dec 2012 -
So here is an update for everyone - after peeing on at least a dozen sticks, having a series of blood work done...

We are pregnant! 

I know my last post was a bit ambiguous, but I really didn't have my thoughts together yet.  And it still feels a little surreal; we have done so much and been through so much over the past year and a half.  And I honestly had no expectation for this last cycle - my follicle was small, my lining not getting any thicker - basically we were gearing up for another step up in treatment.  The doctor's office discussed it as "just in case you don't get pregnant this time" but I was mentally already there.  Since the AS diagnosis and all the procedures, nothing about my cycle is the same as before so I partially took the first test to make sure I wasn't missing a day to start the next round of treatment.  I set it down and went about the evening - and that second line was so faint I wasn't sure I was seeing it.  I asked Chris what he saw - 2 lines.  So I took another, and the next morning another.  Even after calling the doctor and having some blood work I took another...and the lines kept appearing, even getting darker.  What do you know, they work?!   

Trying to figure this all out really started late summer of 2011 with a series of trial/error that "should do the trick."  Each failure convinced me more that something wasn't right.  Now its been almost a year since the idea of Asherman's was presented to us.  Not to mention the emotions of mourning children that would never come to be because nothing more could be done for us - the suggestion we consider surrogacy or adoption or make ourselves satisfied with one pregnancy.  The series of procedures, medications, evaluations, complications, insurance battles, innumerable question marks and research upon research upon research - it has been quite the experience. 

And now here we are.  Of course you all will be getting this in a couple weeks - it seems too fragile to put out there entirely right now.  I realize it wouldn't change the outcome, and our doctors are quite happy with the lab work - but I can't take a full breath quite yet.  Now we wait for the magic US that will hopefully show us the little bean's heartbeat - and only then will I fully exhale. 

A Reflective Time

Wow, apparently I've really not been on top of things!  In the attempt to avoid having nothing to post, I've posted nothing.  Which is disappointing really because Lydia is hysterical, getting more so everyday.  In fact just tonight she informs me "I'm pretty funny mommy" and shortly after that gave me a time out because "that's not okay" - although I'm not sure what I did that wasn't ok yet.  At least I know she listens!  When her daddy left to go snowmobiling, and she was informed that he was on a trip, she tells me that "we should follow him" and that she is going on a trip too.  This is in between breaking into any variety of songs on a regular basis.  She serenades us quite enthusiastically.  She has been literally jumping in to swimming - loving her weekly "lessons" with Teacher Jo and the boys.  Which also translates in an interesting way to bath time - with dunks and back floats and swimming all over the tub.  Look out Min-aqua-bats, here she comes this summer! 

Christmas was magical for her, which made it that much more magical for us.  The ooooh's and aaaah's and Merry Christmas and Happy New Yr Mommy were priceless.  She was very excited about both Santa Claus and Baby Jesus's birthday - mixing a Happy Birthday in with a few Jingle Bells and Deck the Halls.  I think the best was her pure delight in seeing the lights go on the tree every day, and the beautiful angel on top which was captivating for her.  She loved opening cards and seeing all the pictures almost as much as opening presents.  And thankfully so far she loves giving as much as receiving.

As for an update on the Asherman's front - the last several months have been multiple rounds of roughly the same processes.  Medications, followed by hormones, followed by lining checks/imaging, followed by injections - there have been some variations along the way but all attempts to do something helpful especially with a lining that has somewhat recovered, but hasn't seemed to want to completely normalize.  Basically all the "bald" spots have filled in, but the overall thickness doesn't seem to increase.  Apparently my lining likes to maintain itself in the mid-5 mm range.  Dr. Olive has a new option each time so we're working on it.  Unfortunately some treatments I need counteract others, which leads to an interesting push-pull of timing and medications, but overall I have been telling myself at least we still have options. 

In the quiet of the house, with the dog laying on my feet and the fireplace going tonight, I am thinking of all the wonderful people in our lives.  The support and love from everyone around us on even a daily basis is amazing really, and I don't think we (or others even) take the time to appreciate it enough.  So on this eve after Christmas - I wish a Merry Merry to all, a blessed 2013 and many thanks! 

Shifting focus

Patience is not my strong point - (so sorry my darling baby girl, you do get that from me!) - and that lack of patience is partially why I haven't updated in a while.  I want to have something to say, something real, something of progress, something interesting!  Of course I also have fallen victim to the busy times of summer; welcome distractions to otherwise being at a standstill.  I've again been thinking about updating a few times in the past few weeks.  But honestly I partly feel we haven't much that is noteworthy, I don't even want to hear myself some days, and certainly don't want this blog to become all boo-hoos and no hip-hip-hurrays!  But for some reason today feels like a blog day. 

I am going to try and shift some focus eventually, especially since there is so little to actively report in our Asherman's situation right now.  In fact I can happily report "tmi" that I am still having periods and there seems to be no outward sign of recurring scar tissue.  I haven't had a lining check in a while, but can only hope it continues to improve.  However, in my anxiety driven world I am increasingly concerned that this fertility struggle will more actively involve my PCOS this time around as well.  Everything previously related to PCOS seems in to be raring up in full force.  On top of the physical symptoms that are just plain annoying, I don't believe I am ovulating which is downright depressing.   So it is off to see the doctor again and get some insight.  I do feel good about being able to continue to see Dr. O - after going through all this Asherman's stuff with him the PCOS things seem minor - but a one stop RE that I can trust is definitely a bonus!

But since I can't do anything else for now, I'm going to take a cue from my own blog title.  After all, our family's evolution is more than just our struggles and what might come.  It is also the day to day joys of having a crazy toddler with my best friend/partner/husband.  So I am going to make an effort to post more of those things as well.   

Random thoughts & doing nothing

The last few weeks have been random.  Busy with work and play.  I've been a little more involved/in tune with a support group for those with Asherman's which I think is a good thing, I mean that is what it is for right?  It is much more encouraging to hear the success stories from other women/families on that site, and know they've all been through the same range of emotions and required patience and perseverance.  Many of them for much longer than us.  The literature just can't capture it all.  But then the heartbreak is that much more real as well.  The frustration is real, the loss and the sadness is real.  I've been brought to tears by recent stories/postings.  Seeing people decide to "stop trying" is hard - even though that may be the right decision for them, it is hard to imagine we might be in that position at some time too.  No matter what our evolution though, I have found a need to share, educate, console and support people more than I would have predicted.  I have full praise for our doctor already, and we have so much time left ahead of ourselves.  If I can pass that along to someone else, that hope, then I think I need to.

This is also a weird time for us because we aren't actively doing anything right now.  Obviously the recurring theme has been that of waiting, always waiting for something.  I am not readily a patient person; I like to think this is a lesson I both have needed and am at least learning.  So again we wait - but this time there is nothing to do while we wait.  I don't even have medications to take this time around!  I wait for another month to go by, knowing the last scope was clear but wondering if the scarring will still come back.  We wait until I have another hysteroscopy to check my lining - I don't want to do it too soon because if it's not there I don't want to be disappointed, and just be told to wait some more.  I don't want to hold out very long because what if it's fine and we could get the official go ahead?   I think that is why I find myself on the AS support site more.  I end up researching studies/reports to find if there is anything I can do to improve the lining.  I'm much better at having patience when it is an active task.  

My work schedule is looking up, and I anticipate being able to enjoy my darling daughter and husband even more often.  I'm happy to be kept busy by my family and friends.  And am really thankful for all the support, love and prayers being sent our way.  I understand everyone has their own difficulties to conquer, and just knowing there are wonderful people that are taking some time to think about ours is uplifting.  I truly believe your collective strength has helped.      

Still moving forward

I realize things must be going okay when I haven't thought about updating in a while.  I think I'm feeling a little shy about it because I don't want to have too much hope/excitement only to have another let down, and putting it in writing makes it real.  Because honestly right now this entire adventure feels a little bit like a dream - some days a nightmare - but overall is surreal.  We have experienced all ranges of emotions.  And the waiting never ends.  But we are still moving forward. 

Since our last post I've had more hormones, actually looked forward to a period for probably the first time ever, and successfully re-navigated that adventure.  So following a successful withdrawal bleed I had another hysteroscopy, this time to evaluate how much space stayed open since the balloon had been removed, how much lining was present and if tubal openings could be found.  I admit I was actually nervous again for that appointment - not for the procedure itself, but for the results.  I was anxious and excited and trying my best to go in level headed.  It seems I'm doing that weekly - trying to stay even and rational, while still enjoying the small victories.  This month we've had a few, including the most recent hysteroscopy.  The appointment gets scheduled for at least an hour to allow for procedure set up, visualization, and removal of any recurring scar tissue.  In my case, there was none! Not one band or closure of any corner - just an open uterus cavity.  In fact, our doctor said "this is a cavity that could sustain a pregnancy" which at this point is as good as we can hope.  So 20 minutes later I'm back out the door with a decent grin, a hope and a prayer.  My doctor was quite pleased as well, it was encouraging to see his response. 

Of course that doesn't mean we are in the clear.  Other unknowns at this time are still the fallopian tubes - the openings at the uterus are open & both were seen during the study, but we won't know for sure if any scarring is up in them further until either we have another specific study call a hysterosalpingogram (HSG) or we end up pregnant.  Obviously we'd prefer the later, but another delay in that is the endometrial lining.  Part of the problem with Asherman's syndrome besides the scar tissue obliterating the potential space need to have/sustain a pregnancy, it also replaces the endometrium and sometimes the D&C itself causes the uterine wall to be bare, damaging the surface below the layers of lining into the muscle itself.  In my case there wasn't any real space left so only a minimal area where endometrium could exist.  Part of the hormones was to help the healthy layer proliferate - although on many days the only sensation I had was that of wild fluctuations in mood and (ir-)rationality.  So during the hysteroscopy there was a very mottled appearance to the uterine wall - much like on a globe except red/white instead of blue/green.  The red areas have already "healed" themselves, but the white areas are still bare.  Now (AGAIN!) time will tell, as it is hard to predict how quickly that will fill in.  So we wait some more - waiting for the endometrium to recover across the wall, and hopefully get thick and cushy.  Otherwise its like trying to plant something on a concrete sidewalk instead of in a pot of nice black dirt. 

Oh yea, and am I even ovulating?  This is the first time in a long while it has been worth starting to think about that, but realistically my PCOS could still cause trouble with our agenda.  Fortunately I would continue to see our current doctor for that as well, if it turns out we need to shift focus.  But again one step at a time.  That mantra  helps break things up into each manageable segment of time, but while looking back the year has flown!  In another couple of weeks I'll probably have another (hopefully final) hysteroscopy to check on the lining growth, maybe follow with additional ultrasounds, and move on.

Baby steps?

Week by week has passed by, and somewhere in there I completed my full month post-op with the balloon stent.  I realize that is a success in itself, but good riddance to that part!  I had a lot of anticipation for that post op visit.  I'm not really sure about what - I mean, I knew we wouldn't have answers at that point - but I was excited about it none the less.  Probably because the balloon removal is another concrete marker that we are doing something in this journey.  At least we're taking baby steps forward.

Some days the time is going by and it feels like I have no more news, no update, no progress, nothing.  I'm usually more of an action person, so this whole patience thing is a tough one for me.  I start to worry - what if nothing works?  My leg cramps and I think do I have a clot? What if I can't take the hormones long term? Should we also still be looking into gestational carriers?  Are we loosing time by trying all this on me?  Most days the goings on of life are enough of a distraction, but then there are the days when it feels like we have so more to do and haven't made a dent at all!  So the last appointment - having the balloon out, confirming there is still a cavity there and in some sparse areas some lining, moving on to the next set of hormones...at least it all gives me another new point to anticipate - not really a finish line, but another check off the list.  Baby steps, right?

So the current baby step is more hormones.  Then hopefully evidence that the cavity has stayed open.  I'll need another couple of studies (1, 2) to look at that & potentially remove any scar tissue that might start to reform.  Who knows how long I'll need the hormones since it is unknown how long it can take to get lining back where there currently is none. 

The husband has always been the reasonable one - don't react until we know what to. Don't worry about what might be the case. Don't put the cart before the horse. Usually he's telling me all that in the context of my pre-emptive anxiety. I rationalize that I'm being realistic, planning for the worst & hoping for the best. What I have realized is that it takes a lot of energy doing it my way. So I remind myself again we are moving in baby steps, and for now those steps are forward. Even our doctor tells me to take it one event at a time. I ask for the grand plan, and he tells me every time that it depends on the outcome of the next step. One of these days I'll listen to both those men...

My girl

Today is a day I am so conscious of my love for and luck to have my beautiful (and increasingly defiant, independent) blessed little girl.  We had a close call with a potential car accident a few months ago, that ended tragically for some others.  It was a very disturbing experience then, and in the past few days I've had to revisit it as a witness in the legal proceedings surrounding the event.  It is no less disturbing now, and if I have to think about it, I choose today to think about how precious life is, and how precious my girl is.  Today, she is all I think about.

Post Op Halfway Point

So I realized as I was filling my pill box the other night that 1) it is both weird and amusing that I have a pill box, and 2) I'm 2 weeks into this round of hormones, so half way through the planned time with the intrauterine balloon.  That means I only have 2 weeks left until it gets removed.  Not that there is anything for me to do right now, but at sometimes all I can do is hurry up and wait.  For some reason though this time the continued weeks of doing "nothing" feel more like I'm doing something when I'm filling up those little boxes.  I don't know if its just breaking up the time into smaller intervals, but each week goes by much faster than waiting out the month.  I did have a post op office visit after one week, and things seemed as good as can be expected at that point.  It was so different to actually see a cavity there on the US screen this time, but is way to early to know if it will be functional on so many levels.  Questions still remain if I'm developing any/enough functional lining or if the tubes themselves are open.  I'll have the balloon removed in 2 weeks, then a few more studies to check those things and monitor for any redevelopment of scar tissue with office hysteroscopies.  Sometimes it seems daunting, how involved the process is, how many questions are still left, especially considering how many things we've done already.  But I've gotten pretty good at this one step at a time thing.  The other good news (depending on your point of view) is that the hormone levels have to be built up in my system because I'm back to crying every day over the most ridiculous things.  I'm not even sad half the time it happens, or at least I don't think so, just crying.  Sometimes I'll start crying, and then laugh at how I have nothing to cry about.  The husband loves it, if you can imagine.  I'm also constantly nauseated, which apparently is another side effect of the high doses of hormones, and maybe the antibiotics.  Now don't get me wrong, I'm not complaining, more observing out loud if you will.  I fully realize all of this is part of the process, and am more than willing to cry all day every day, and be 100 times more nauseated if it would help our outcomes.  Its just a little surreal to cry through 3 episodes of Glee, feel like throwing up before, during and after a meal, and then wake up in the middle of the night starving with eyes so puffy they are almost swollen shut.  Those around me are probably just as awed by the upswings - the giddiness that comes either from the estrogen itself - or the comparative result of just not being nauseous and depressed at that moment.  So who knows which me you'll run into next, but stick around and you might get to share the whole spectrum.  Not to worry, I'm sure it won't take that long. 

Surgery - Take 2 - part 2

This is the post I'm supposed to recount what happened with surgery day.  However I'm still a little groggy and basically slept the day away yesterday.  The procedure was a little longer and the anesthetic a little different this time around - but those are good things because it means we made some progress.  Most of what I know now is from what our doctor said to my husband while I was still in recovery - but the look on his face when I woke up enough to ask questions said enough.  I can't explain it exactly, but last time he had a sadness, a fear there - this time there wasn't.  It is too early to know everything we'd like to, but at this point we do know this:  I apparently actually had 2 small areas of normal tissue/cavity buried beneath a mountain of "concrete-like" scar tissue.  But our doctor was able to recreate a uterine cavity and get the balloon to stay in place.  He apparently had to use a number of different instruments to do so, and was surprised at how dense the adhesions were so it took a little longer, but was relatively satisfied at the end.  So that is a victory, and more accomplished than last attempt with our previous doctor.  I have follow up next week, and in the meantime have to monitor closely for any fever or infection.  Since the scarring was so severe he hopes to leave the balloon in place for 4 weeks, so antibiotics everyday for that.  Then there are the fun hormones to help everything heal as best it can, and hopefully the endometrium to grow.  Considering the doses this time around are even higher than before I'm sure to be an emotional mess again.  I cried every day for no reason before, so the count down to that is on.  A small price to pay though I realize, it is more a warning for others than a complaint from myself!  

As I've mentioned before on this blog - there are really 2 goals of this surgery.  One is relieving the obstruction to reduce endometriosis and cancer risks.  I feel good about that outcome, and the ongoing office visits will hopefully confirm that.  The other is to restore our fertility, and there is a lot more to do before knowing if that will be possible.  I've said it before, even with an open cavity and a restored endometrial lining the actual live birth rate for patients with severe Asherman's is not great.  Miscarriages are frequent, as are preterm births with a lot of complications if one does get pregnant.

For now though we aren't dwelling on the downers, I'm restarting my prenatal vitamins and Metformin in case we do get the go ahead, which is as optimistic as I get.  We are taking the time to laugh at my groggy comments, even joke about having to buy a pill organizer ("think they'll card you for that to make sure you are old enough?") and at how different the "lady products" are since the last time I bought any.  To much info you might say?  Well, that comes with the story.  So laugh along with us, and keep your fingers crossed.  It is all we can do for now while we wait.   

Surgery - Take 2 - part 1

Once we had everything in line to schedule surgery I so was disappointed yet again.  I called with my medical approvals, heart testing, clearance from insurance - all of it in place, to learn the first opening wasn't until the end of July - after all the waiting we've done so far, the end of July felt like forever away!  Lucky for us there was a cancellation, so I was actually able to be scheduled this week.  I had intended to update a post the night before surgery - my mind was going a mile a minute, I couldn't sleep.  It was a combination of excitement and dread, and a lot of nervousness.   Of needing to temper any hope with a healthy dash of realism.  I've been called a pessimist on occasion, to which I respond that I'm just a realist - hope for the best, plan for the worst - that may sound depressing, and certainly not any fun, but I suppose it functions somewhat as a shield, a safety net if you will.  It's a lot gentler of a drop if you're already halfway there.  Somehow I eventually went to bed, slept light, woke up early, got the baby to daycare and checked in Preop for Surgery - take 2.  

Starting over with guarded hope

Our second opinion visit was a week ago.  For now I'll try to move on from the frustration of not having seen him first and explain where we are now.  The short version is after reviewing my history and chart and imaging, our new physician said he thinks we actually haven't had much done.   Obviously there are no guarantees, but his opinion is that we have a few options/procedures left yet.  We might get into the normal sections, open the blockages, reconstitute a "normal" cavity, and still not be able to be pregnant.  The reality is live birth rates for Asherman's patients after treatment for severe cases are still only 30-40%,  but the potential medical complications do need to be addressed as well. We spent a lot of time with him going over all aspects of my case.  We went over all the questions I should have asked the first time around - and I didn't have to ask most of them because he volunteered the information.  He's done over 250 cases like mine (as opposed to the handfull our previous doc has seen).  The other recognized experts are on either coast, so they've basically trisected the country in terms of getting referals.  He was frustrated along with us that he was just down the road and didn't get a shot at us earlier & that he even had talked with our last doc between my first referral there and the last procedure!  He's had a lot of successes, but also had to tell patients he couldn't do anymore - and assures us he'll tell us when/if we get there.  So where does that put us now?  Basically with guarded hope.  At least now if we end up in the same position we can know we tried everything with the best options available.  After the heartache of the last events I'm not letting myself be overly optimistic - I can't face that let down again.  But I will welcome any miracle that might come our way so it is worth trying.  I'm so fortunate he is right here in town - we can actually schedule all this with ideal timing and not be constrained by airline travel or needing multiple days off work, or expense issues, or any of the other limitations so many of his other patients are under.   I will be going through another operative procedure in attempt to breakdown the scarring (but now in expert hands) and another round of crazy hormones, then a number of office procedures to try and keep the scarring from returning.  The difference is really in the details - the instruments, timing, doses, follow up procedures - that are all developed specifically from experience in treating other Asherman's cases.  One of my good friends said in her own difficult time that it actually made it a little easier to realize and accept not being able to control everything.  I'm working on that, and I think I'm making progress there.  So we're keeping our fingers crossed - but not holding our breath. We should know a lot more in the next couple of weeks, and will have some big decisions to make then.

Would it have been different?

Fortunately so far insurance is cooperating, which really is a result of our own efforts.  And its a small consolation since I should have been seeing this "2nd opinion" physician from the beginning.  It is so frustrating that business gets in the way.  Turns out our last physician hasn't really seen much of this condition, and therefore hasn't done many of these procedures...and by not many I mean I may have been the first one he did with ultrasound guidance.  I try not to be angry, because it doesn't do any good.  But I am angry.  I'm angry because you trust your physician to do what is best for you, and that should include the referrals that are best.  I realize that isn't how all referrals work, and if there are multiple experts available then fine - but come on - in Asherman's there just aren't that many experts around.  In fact the vast majority of people with Asherman's don't have any chance to see a real expert, or if they do it requires traveling not just across the state, but sometimes across the country.   Lucky for me one of the national top 3 experts is just across town.  Except we only have our own research to thank for that discovery since we were referred on it was to someone a couple hours away.  Since we didn't know Asherman's was going to be the diagnosis when it all started I had no reason to question seeing our in-network physician in the beginning - or what he was doing for that matter.  And the general concept of what he did seemed appropriate according to our research once we did know what we were dealing with.  However (and I fault myself for this) I never pressed him on his experience with Asherman's.  How many has he seen?  What severity has he dealt with? What procedures has he done?  How many?  What were his personal outcomes?  What was his comfort level with proceeding?  What made him change his approach slightly from consult visit #1 to the last procedure?  I don't know why I didn't ask any of it.  I don't know if I even thought of asking it then.  I don't know that it would have changed what we did anyway, especially since at the time this was the only option that insurance would cover.  And really at this point it doesn't matter, but I can't help wondering.  If my insurance provider didn't have to change we'd have seen this physician from the beginning; would we have been spared the heartache of an infertility diagnosis?  Of failed management?  Would we be still waiting on that news - and would it be the same?  Will it be the same anyway?  Fortunately in this process we at least haven't gone backwards or made things worse as far as we know, which has happened to many others across the country.  The important thing I keep reminding myself is that at least we are in expert hands now.

A second opinion

Right now we are anxiously awaiting the next steps.  We'll be having a second (and final) opinion on if anything else can be done to fix 'my broken uterus.'  There are two issues at stake here really - 1) potential medical complications down the line, and 2) our infertility.  We are going into this second opinion expecting confirmation of what we've already learned, I have to.  I'm not looking forward to it,  but I need this confirmation to feel confident we can move on to whatever is next.  I can then stop thinking about that little normal pocket I supposedly have.  I can refocus on exploring other options.  Knowing this next appointment is with an expert in Asherman's specifically is reassurring - I'd have no more reasons to second guess if there is anything else to try.  But what if he tells us there is?  I admit I find myself with unsettled feelings about that.  Why unsettled?  I haven't given the purely medical issues much thought, there is plenty of time to figure that out. But even if things can be "normalized" it doesn't mean my pregnancy outlook is much better. Because then the waiting and the hoping and the heartache start all over again.  An entire new subset of questions comes up.  Even if there is another procedure in my future, the little data out there on pregnancy after Asherman's is mainly for those with mild-moderate disease.  Once over 35, or having severe disease, actual live birth rates are still minimal; we're looking at both.  How much hope do we open ourselves back up to?  And with that question is where I have to stop - it is all what if again - until the second opinion.

The Insurance Game

So glad I don't have to deal with insurance companies on a regular basis!  I do as a provider often enough, and it's never straightforward.  Now I'm getting cozy with the details of being a patient in this maze of paperwork and phone calls.  It gives me a whole new perspective for my patients as well.  I already have some working understanding of it all, and its still a mess.  Some of that makes it more frustrating, having to explain to a medical reviewer why my preauthorization request should be granted.

The "second opinion" we've been referred to is out-of-network; basically we've already seen our in-network expert so anyone else will be out of network.  Talk about frustration, try the politics of referrals; I'm sure most people assume referrals are onto the next best expert.  I hate to break this news, but it is not that simple.  Need we forget healthcare is a business, and insurance is a bigger business?  Even within a group of specialists, not everyone has equal expertise further subspecialties.  It gets complicated.  But after doing a lot of research we've actually discovered one of the few IUA experts happens to be nearby.  In fact he is who my first OB/GYN wanted me to see but I couldn't then b/c of insurance; granted we didn't know at that time what the diagnosis would be, or how severe.  Ironic, sad, frustrating.  So in the meantime, we play the waiting game some more, this time with the Insurance company. 

Some things are not helpful

How do I say this - I know everyone means well. I've potentially even been the offender here to some friends and sooo wish I could take it back. But there are some things that are just not helpful. It is part of why we kept this private when we did. I KNOW things in life could be worse. I KNOW our daughter is a blessing. I KNOW we are lucky to have been pregnant once. I KNOW all these things. It doesn't change how I FEEL. Sorrow for the pregnancies we'll never know does not take away from the love and joy we get from the one we did. And in the mess of emotions, I don't need to feel guilty about our grief. I don't particularly want advice, or a pep talk, or for my friends/family to "fix it" - you can't. Real support is sometimes just a hug, a smile, a prayer.

There are a few compilations of advice for family/friends of those experiencing infertility issues out there. I've put together some suggestions, and they are on the Suggestions page on this blog.  They are summarized from our own feelings and experiences, other blog sites & support groups, and the National Infertility Association. Some apply to us personally and some don't, but I feel it is better to put it out there for everyone to think about. You never know if someone close is dealing with this, and they'll let you in when they are ready. Hopefully this can help when that happens.

Sorting through the emotions

I cannot get pregnant again.  It hurts beyond words, my heart aches.  When this evaluation started I knew that it happens to some people.  I had a range of feelings about the situation, including frustration and a lot of impatience.  It felt like I was surrounded by babies and pregnancies.  It was hard to have one thing after another not come out right.  To have time keep going by, endure more referrals and tests and procedures.   Sure, I was prepared for things to not be straight forward.  After knowing for a decade already that I had PCOS, on some level I expected "problems."  However I didn't really think this would be the conclusion for us.  Sure I could need medication & procedures, but that I'd never be pregnant again?  Once we heard this, I spent days a sobbing mess and being a very angry, tired, depressed person.  Initially all I could do was cry and sleep; then I couldn't turn my thoughts off long enough to get any rest.  I played the "what if" game constantly - what if I asked more questions post-partum?  What if I opted for meds instead of the D&C?  What if I didn't pump so much to stock our freezer?  What if I weaned earlier?  Is there someone to blame? Is that person me?  Why did this happen to us, am I not a good mom?  But we are good parents.  We've planned for more children.  They are supposed to be running all over, filling the house and the yard and emptying our bank accounts and refrigerator. On a rational level I know this thinking is not helpful, but that doesn't stop it.  Then throw in the guilt - as I realize how lucky we are to have our little girl, how our complications could have been much more severe.  I felt guilty because we do have her, maybe I'm just being greedy.  I feel guilty that I'm mourning future pregnancies when some couples don't have a first.  But still I find it hard to be around babies and pregnant women; it feels like they are suddenly everywhere.  I try not to cry at their showers, or when seeing their newborns or pictures.  Then I feel guilty again, like a terrible person, because our sorrow should take nothing from those joys.  And I really understand the blessing each of those little one's is for their families, just as ours is and I'm joyful.  Until I see pictures of my own pregnancy and newborn , and it hurts again.  A few people have asked how we are doing; I can only say it depends on the moment for now.

No words to explain

Why a blog? I've been thinking about starting a blog for years.  Thought in planning our wedding would be a good time, but I never did.  Our pregnancy and birth of our daughter would be a good time, but again, I didn't get around to it.  So why now?  Ironically, no words can explain it.  We are in the midst of a "never thought it would happen to us" kind of event.  We have what the experts call secondary infertility; for us it is a result of Asherman's Syndrome.  For now this blog is starting as a way to share these difficlut events, to explain what is going on without having to explain it.  My hope and intent is that this blog will evolve into more than a recounting of our struggles.  It will evolve as our family does, we just aren't sure yet how that will be.