A Post Script and an Infusion Update

I guess my post from yesterday riled a few people up, which was definitely not my intention.  If you don’t care to read my defense of that post, and prefer to read an update on our infusion therapy treatments, feel free to skip down to the second section for that.  :)

I meant no offense whatsoever with yesterday’s post, and was just expressing something I’ve noticed more and more of lately… There seems to be a little bit of a double standard when it comes to infertility and pregnancy, and while the majority of Infertiles are not included in this action, there is a lot of judgement out there on the interwebs.

Someone mentioned to me that as far as pregnancy complaints by Infertiles who have managed to conceive, that the audience makes a difference.  I agree a thousand percent with that statement.  There is no excuse for someone who’s been there in the trenches to bitch and moan to a group – or internet full – of people who would give anything to be in that position.

I was in no way defending that atrocious behavior, though the folks who do that are obviously a bit misguided in where to turn for support in their current situation, and could probably use a gentle nudge in the direction of their local Pregnancy After Infertility Support Group.

What I was trying to convey, while perhaps a little clumsily, was that I don’t think anyone, let alone our fellow Infertiles, has the right to shame a woman for expressing some of the negatives about her pregnancy.  It’s easy enough to turn away from those statements if you’re not in a good place to hear them, but openly ridiculing someone for not enjoying every single aspect of what is a totally life- and body-changing event is a bit much.

This has not happened to me, mind you – well, that I know of, at least – but I’ve seen it, and it makes me upset.  Hell, I’ve probably done it at some point in the past myself!

We’re all human, and no matter our path to get to this point, pregnancy is hard.  There are even harder things to deal with than nausea, swelling, pain, and the gross things that come out of your body on the daily, too.  Hyperemesis, preeclampsia, pregnancy complications, and pregnancy depression are all very real concerns that our fellow Infertiles sometimes go on to face after a long battle to get their miracle baby.  Don’t even get me started on the terrors that await a new mother, fertile OR infertile…

Life’s not fair, but as people, we can be compassionate and show a little grace and understanding toward everyone… our fellow pregnant Infertiles – who will always be our sisters – included.

So that’s all I wanted to say… Just a bit of a wrap-up from yesterday.  Agree or disagree, I meant no one any offense, nor did I mean that as an Infertile you are required to listen to pregnancy-bitching from anyone.  You do what you need to do – I know I have turned away from some of it in the past.  It’s a natural response.

And to you pregnant folks out there struggling to make the transition from Infertile with a whole internet of support, to mom-to-be with fears and concerns and complaints with insecurities in who to confide in… You do what you need to, as well.  There are people to listen and support you.

The entire internet might not be a friendly place, but there are PLENTY of friendly faces within the IF community, and outside of it.  I promise to be one of them.

*****

And now the infusion therapy update that I know a few of you have been waiting for…

After a bit of an insurance snafu (read: the hospital scheduled me faster than the insurance company could grant clearance for the treatment, resulting in a scheduled appointment for Thursday, a cancelled appointment for Thursday, a night of panic that insurance was changing their mind on covering the treatment, and an appointment reschedule for Friday morning…), everything worked out just perfectly.

We arrived on Friday morning at 8am at the hospital’s infusion center for check-in.

I was shown to a big comfy recliner, and introduced my nurse and medical assistant.  They brought me a drink and asked me if I wanted any snacks… I liked them immediately.  :)

From there it was all rather uneventful.  The infusion center’s pharmacy prepared my treatment, which came in four small bottles instead of one large bag like you typically see hanging from an IV pole.  The nurse got my IV started, which barely hurt, and the medical assistant helped me recline my chair and got me some warm blankets and a pillow so I could relax and browse things on the internet while I waited.

Once the infusion started, it was about four full hours of internet browsing, snacking, dozing in my chair, and chatting with the husband – who at one point brought me some delicious breakfast from Panera.

It was seriously no big deal.

We were released when it was all over, and I was told I shouldn’t expect any side-effects aside from a little irritation at the IV site, which was more from the tape being torn off than the needle.  My arm didn’t bruise or anything.  Seriously, no complaints whatsoever.

This is the best I’ve felt about our situation since finding out that I tested positive for CMV.  I know that between the infusion therapy and the daily antivirals, we are doing everything possible for our little lady to ensure that she is born healthy and has a happy life.

It’s up to her immune system now… And from what we’ve seen of her recently, this gal is a little fighter.

I’m confident that this treatment will make a difference, and I’m so, SO thankful that all the pieces fell into place so quickly for us.  We started treating this much later than most people do because of the point at which we discovered the infection, but studies show that even one treatment can facilitate big improvements.  We’re hoping to make it to three treatments before she’s born… as long as she’s not so much of a fighter that she decides to fight her way out too early.

Thank you to everyone for the thoughts, prayers, good juju, and positive vibes… Your support means the world to this little family, and I know that I wouldn’t be here, nor would my sanity, without it, and without all of YOU.

XOXO!!

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In Defense of Post-Infertility Pregnancy Complaints

I know.

Trust me… I know.

I spent five years rolling my eyes and just WISHING I had pregnancy issues to complain about.  I swore up and down that if I was ever lucky enough to be pregnant myself, I’d NEVER complain, and I’d enjoy every last second of it no matter WHAT!

So what’s changed?

Nothing, really.

And yet… everything.

I actively appreciate every day of this pregnancy.  I thank God for what he’s given me, even though things have been difficult, and could be even more difficult down the road.  Every stressful, uncomfortable, painful, spectacular moment – I send up a “thank you”.

I want to acknowledge a small belief, however, that seems to stem from one of the more bitter corners of the Infertile Universe, though.

The belief that once an Infertile conceives, that she is never allowed to utter so much as a whine about morning sickness, heartburn, swollen legs/feet/hands/face, or fears of impending childbirth.

This belief is rather widely accepted in some circles, and while I understand where it comes from because Sister?  I’ve been there!, it’s still a little unfair.

If anything, being pregnant after infertility affords you a bit more slack perhaps than those who conceived accidentally while on birth control and drunk in a hot tub.

If you’re like me – pregnant after years of suffering the trials, tribulations, grief and bitterness of infertility, then sweetie – I’ve got some advice for you:

Bitch about whatever you want, lady.

You’ve earned it.

Don’t take pregnancy for granted – like that’s even possible – but give yourself a break and understand that your past doesn’t make a difference in how pregnancy will impact your body.  Physically, you’re undergoing one of the biggest transformations a person can make – you’re literally MAKING A PERSON – and that’s going to come with some pain, discomfort, stress, panic, and a lot of really gross shit.

Complain if you need to.

Ask for help.

Search out those who understand and don’t judge – those folks are going to be the most supportive people to have in your corner.

Sometimes those people will be members of your Infertile Circle…

But more often than not?  They won’t be.

Which brings me to another point:  When you’re pregnant, you obviously don’t want to alienate your fellow/former Infertiles, but maybe not-so-obviously, you really don’t want to alienate the Breeders in your life when going through infertility either!

You’re going to need them one day, and if you’re lucky, they’ll have stuck around and will still be willing to support  you through your early pregnancy freak-outs, guide you through your midnight acid reflux horrors, advise you on the best granny-panties to pack in your hospital bag for maximum lady-bits comfort, and come over to hold your baby while you take your first shower in a week once you’re home from the hospital with a screaming armful of infant.

Moral of the story is this:

We all need each other. 

Don’t screw it up. 

Life is hard, and complaints are allowed. 

Give a little slack, and get a little in return.

Infertility sucks, you guys.  We all know that.  We all aspire to grow out of infertility and blossom into pregnancy as gracefully (and as SOON) as possible.

Pregnancy can be beautiful, and as much as we want to think it’s going to be all glitter and rainbows when we finally achieve that dream, sometimes the cold, hard truth is that pregnancy sucks, too.

And, as much of an optimist as I am most of the time, I can tell you for a fact that going through either of those things without a strong, understanding, judgement-free support system will also suck.  Big time.

So don’t be so hard on the complainers out there, even if they are former-Infertiles who “should know better”.

Throw them some slack, because you’ll  need some yourself one day…

Also, you’ll need someone who won’t judge how greasy and smelly you are after a week with no sleep and being brainwashed to respond to a tiny, wiggly pink creature’s every whimper and snuffle.  You’re going to be gross, you’re going to need clean laundry, and you might need help applying various ointments to your cracked and destroyed nipples.  You may also need help feeding yourself, washing your own hair, and doing the small, basic personal maintenance tasks like changing your underwear that keep a husband in the house…

So, you know… Complain at will, but just don’t alienate the supportive folks you have around that you can trust to help you with those things and NOT post photos of it on Facebook.

Trust me.  I’m already putting aside bribery money…

*****

A Bit of a Post Script

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October 15th

Today is a day of remembrance for so many in the infertility community, including myself.

Share, support, grieve, and celebrate with those parents who hold a child in their hearts instead of their arms.

Please join me in lighting a candle tonight at 7pm as we remember our little ones gone too soon.  <3

 

OCTOBER 15 DAY

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Insurance Update – GOOD NEWS!!!

Dude.

They’re covering this treatment.

100% covered.

Holy tap-dancin’ Jesus on a bicycle, you guys…

Best news we’ve had in a long time.

I’ll update more when I know it, but infusion treatment should start as early as this week, and the antiviral meds will get started tomorrow!

THANK YOU to everyone for the thoughts, juju, prayers, and good vibes!  Keep it up, because it’s obviously making a difference!!

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A Result, an Update, and a Plan.

Tuesday, October 14th, 2014.  29w5d.

I know many of you have been waiting to hear the results of the amniocentesis that was done last week, to determine if the virus I have has crossed the placenta and possibly infected baby girl.  I appreciate your kind words, thoughts, prayers, happy vibes, good juju, and manic stalking more than you can ever know.  :)

Our results came in earlier than expected – Friday afternoon, actually.  I do apologize that I kept some of you waiting, but before telling the whole world, we wanted to meet with doctors and gather some semblance of a plan.

I do hate blind results with no next steps in place…

*****

The amnio results were positive for CMV.  This means that the virus has crossed my placenta, and is currently in the baby’s blood stream.  Her urine, which is basically the amniotic fluid that was tested, is showing that she is shedding the virus.

I have it, she has it – and now what does that mean?

What this means is that we now have a higher chance for baby girl to be affected by the virus in utero, at birth, or beyond.  This could be in the form of mild central nervous system issues such as learning delays or mild hearing or vision loss, or more severe issues such as blindness, deafness, and mental retardation.

What this also means is that there is no real way to know if she will actually suffer any effects from the virus… There is just no way to be sure, aside from time and watching her carefully as she grows.  She could be perfect at birth and develop issues later, or she could just be perfectly healthy and grow up a normal, healthy, crazy kid.

At the moment, the ultrasounds are not showing anything greatly concerning, which the doctors say is encouraging.  They do say, however, that sometimes just because something is growing and looks appropriate via ultrasound does not always mean that it will function exactly the way it should.  We just can’t know what the future holds for this little one based on all of the data we have today.

The not knowing is excruciating.  It takes me back to the darkest days of infertility and not knowing if I’d ever be a mother.  This is different though, because there is an actual life, not a vision of a life, in the balance.

This is my child.  The one I feel kicking and squirming all day long.  This life is real and tangible, and in true danger of suffering anything from zero to mild to severe issues throughout her life due to a virus I couldn’t protect myself from, and could never have seen coming.

And so now, despite advice from my previous doctors to just wait it out, we push forward.  I’ve never been one to just “let things be”…

*****

My new doctor has recommended a two-pronged plan of attack on this virus, and the husband and I are fully on board.

She recommends a very high dosage of an oral anti-viral for me, to work on killing the virus that is in my system currently, and hopefully be some benefit to the baby as well.

She also recommends the “experimental” treatment I had mentioned previously, an immnoglobulin infusion, to be done once per month as soon as we can start.  Likely I would only be able to do the treatment twice before delivery considering how far along I am at this point – most women find out they are CMV positive much earlier in pregnancy than I did – but the doctor did say that despite the lateness of the treatment, she still sees the benefit in pursuing it.

So what is our time frame exactly?

We don’t know quite yet.  The one caveat in our treatment plan is that the immunoglobulin treatment is not something that is readily covered by insurance, and my doctor and her staff will have to fill out form after form, appeal after appeal, and plead with the insurance company to understand the necessity of paying for something that is not FDA approved for this use.

And paying for something so ungodly expensive.

These treatments, out of pocket, regularly cost around $20,000 each.  And I’m to have two.  Maybe three.

TWENTY THOUSAND DOLLARS.  PER TREATMENT.

I almost laughed, just because we somehow, by the grace of God, avoided having to pursue IVF at that cost… and now this?

The irony is there.  I see it.  It would almost be funny if it wasn’t so horrifying.

So despite having a plan in place, we wait yet again, this time on the insurance company and the amazing staff at University of Michigan’s Fetal Diagnostics Department.

May the odds be ever in their – and our – favor.

*****

And so that’s where we are.

Waiting.

Hopefully only for another couple of days… I’m told that we can move forward with treatment as soon as we have some kind of go-ahead from insurance, and from there, we hope and pray that the antivirals for me help kill off the virus, and that the immunoglobulin infusion treatment for baby helps boost her immune system so it can fight off any damage the virus could be causing to her system.

And still, we pray for the miracle that despite the virus, baby girl fights and stays strong and is born perfectly healthy.

I think that’s what every mother hopes for their child, but it’s a very real concern for me at the moment.

If you’re the type to send up a prayer, happy thought, or positive energy of any kind, please think of both the doctors who will be appealing our case to the insurance company, and doctors who work for the insurance company to have compassion for our situation.

Financially, this could be a huge blow, but considering there is no other choice but to do nothing, we will accept what we need to do to give our baby girl her best possible chance at a happy, healthy life.

…Even if she does have to sleep in a drawer.

*****

Again, thank you to everyone who has reached out with positive thoughts, success stories, caring words, and real and virtual hugs. 

You all are keeping us afloat, and we will need you even more in the coming days, weeks, and months.

Just… thank you.

*****

UPDATE, 10/14/14!!!

 

 

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Because You Asked… And Because I’m an Open Book: Details, the Baby Edition.

I’ve been asked a few times in the past couple of weeks what exactly is going on with my pregnancy.

Is the baby okay?  Are you okay?  Why are you going to the doctor so much? 

Is everything alright??

Short answer?  No.  It’s not.

However, the longer answer is that we’re well on our way to answers and possible solutions, and those are all very positive things.

Let me ‘splain.

…In great detail and at great length.  It’s been a long couple of weeks… you’ve been warned.  :)

*****

Back  in August, I had a routine anatomy scan at 20 weeks.  Baby looked wonderful, just a little smaller than average, which didn’t much surprise me considering I am married to a hobbit.  :)

My OB’s office said that because a couple measurements came back smaller than they’d like, they would prefer to send me over to Maternal Fetal Medicine for a follow-up scan, just to see how two weeks and a different machine looked with baby’s measurements.

No biggie, right?

Sure…

So I went to the follow-up, blissfully ignorant that anything would be wrong.  The sonographer was chipper and lovely and said my baby looked beautiful to her.  Once the scan was complete, a whole horde of doctors came into the room with a genetic counselor to talk to me about “my options”.

Uhh… what??

They told me that the ultrasound had showed not only some smaller measurements that were somewhat concerning, but also bright, or echogenic, areas in the bowel.  I was told that neither of these was terribly worrisome on their own, but together could be markers for all sorts of diagnoses like Down’s Syndrome, cystic fibrosis, and other genetic abnormalities.

I was offered more advanced genetic and infections testing, which I readily accepted.

Two weeks later, around 24 weeks at this point, I was told that my genetic testing had come back looking excellent, with very low odds for the baby having any of the main genetic abnormalities they test for, and that since I am not a carrier for cystic fibrosis, that was also not a concern.  My infections panel however, had come back positive for CMV, or cytomegalovirus.

You can research CMV in pregnancy all day long, and it will scare the pants off you.  It’s extremely common, and yet I’d never heard of it.

Well now I’m extremely well-versed and educated.  I know the important things, such as:

  • Most people have been exposed to CMV by the time they reach adulthood, and by then have formed antibodies to the virus, which is not dangerous in pregnancy.
  • The only time it’s really dangerous to have CMV is if you are exposed to it for the first time – a primary infection – during your first trimester of pregnancy.
  • If that happens, there is a much larger chance that the infection could cross into the amniotic fluid and infect the baby.
  • If a baby contracts CMV, it is called Congenital CMV or CCMV, and can have some serious effects on the baby, including blindness, deafness, and mental retardation.
  • There is a much higher chance that a baby born with CCMV will not be impacted by the virus, but one in six will suffer serious issues…
  • The only way to test a baby for infection is either through amniocentesis, or to wait until the baby is born and test her then.
  • There is no standard treatment for CCMV in babies, but there are some antiviral protocols being practiced by Pediatric Infectious Diseases Specialists nationwide.  These treatments cannot reverse serious issues caused by the infection, but can help in possibly preventing further damage from occurring.
  • There is one, somewhat experimental treatment being implemented with babies still in utero… And that treatment is showing excellent results in some large studies that have been and are currently being done.

My current Maternal Fetal Medicine specialist recommends the wait-and-see method, wherein we would just monitor the rest of the pregnancy and once the baby is born, she will be tested for the infection.

If you’ve been reading this blog for any amount of time, or know me in person at all, then you know that I’m just not that type of gal.  No sir.

And so I’ve gone rogue.

Big surprise there, eh?

I have been reaching out to anyone who may be able to help me, including an amazing organization, Stop CMV, who was integral in connecting me with a wonderful doctor – one who is leading the national research being done on CMV in pregnancy.

This man, Dr. Adler, reached out to me and we spoke on the phone for a solid 20 minutes on Monday.  He gave me a metric crap-ton of information, including the names of some doctors in my area who may be able to see me and help me gain access to possible treatment while it can still be effective.

On Tuesday, I received a call from the University of Michigan’s Fetal Diagnostics Center, and they set me up for an appointment for an ultrasound and second-opinion consultation with one of their Maternal Fetal Medicine specialists.  They work fast over there!

On Wednesday – yesterday – I showed up to said appointment (I told you they work fast!) and had an ultrasound at 29 weeks to look over baby and all her measurements yet again.

The sonographer and two separate doctors confirmed that the echogenic bowel has disappeared.  There are no further signs of infection that they can see, except some somewhat smaller measurements – however, baby is just measuring a bit small overall – nothing scary.  Also, again, married to a hobbit.  So there’s that.

I was reassured that my baby looks healthy and great.  Her brain is even measuring a bit advanced for her age, so I’m going to assume she’s a smart little gal, too.  :)

And that’s when the appointment got interesting.

The MFM doctor sat me down and told me that in her opinion (and in the opinions of the experts also studying this virus…), the only real way to confirm if baby has this infection while there is still a chance to possibly treat it is amniocentesis.

I nodded, hoping that she would want to talk about scheduling this procedure for sometime soon.  I’m eager to have these yes or no results in my hand so the husband and I can have either a.) the relief of knowing that our girl doesn’t have this possibly dangerous infection, or b.) knowing that she does, and having the ability to then pursue treatment and form a game plan.

This wonderful doctor then told me her plan:  to send me to get some lunch, and then have me come back upstairs for an amniocentesis.

That day.

In like an hour.

…I was a little stunned.  I mean, holy CRAP do they work fast!

So I took her up on it.

*****

In case you’re not familiar with what an amniocentesis actually is, I can give you a quick description.

A doctor takes a needle about eight inches long, and pokes it into your belly, through layers of muscle and fat, and into your uterus – all guided very carefully by ultrasound of course – to get a two-tablespoon sample of your amniotic fluid for testing.

Sounds fairly simple, but there’s soooooo much more than that.

In my case, baby was relaxing after lunch, taking a bit of a snooze upon our first investigation by ultrasound.  The doctor found a good spot to gather the fluid, and inserted the needle.

Sidenote:  When a needle is inserted into your skin, it stings.  When a needle is inserted into your uterus, you cramp up like you’re having a CONTRACTION.

Once the cramping subsided, the doctor started carefully watching the ultrasound so she could get a fluid sample.  Shouldn’t take more than a minute, she said.  Most babies, if they even notice, usually move away from the needle, so there’s really no danger to the baby, she said.

Apparently my baby is a curious little rebel, because she attempted to GRAB THE NEEDLE INSERTED INTO MY UTERUS.

There was never really any danger of her being harmed, as the doctor had the needle tip well out of her reach before she was close enough, but the whole situation caused the amnio to come to a screeching halt.  The needle was removed, no sample was taken, and I was told to breathe and relax for a few minutes and they would try again.

AGAIN.

So yes.  I basically had TWO amniocenteses yesterday.

SUCH FUN.

The second attempt at the procedure was quick and successful, though still very painful, and I was told to lay back and relax for a few minutes while they prepared my shot of Rhogam.

Oh yeah.  My blood type is negative, and the husband’s is positive, so anytime something like this occurs where there’s a chance that the baby’s blood could mix with mine, I get to have a really awesome shot with yet another giant needle.  My last shot was a week ago at my routine 28 week OB check-up where I was told as a reward for passing my glucose screening, I would get a shot in the arm.

YAY.  SHOTS!  And not the fun kind.

So today I feel somewhere in between a pincushion and a waterbed that’s been stabbed and patched.  Moving a little slowly, and overall just a bit sore.

The good news is that despite my tiny, big-brained, strong-willed child’s antics during the procedure, my amnio results should be in early next week.

If the results are positive, we can know that certainly the baby is exposed to, and likely has the infection, and we can start the process of pursuing treatment to help prevent the possibility of serious side-effects.

If the results are negative, we can breathe easy, knowing that baby will almost certainly not be born with, or be impacted by this infection.

Obviously we’re hoping for the latter, but if the results do come back positive, it’s nice to know that there’s a solid plan in place, and a doctor who very much supports our hopes for treatment, no matter if it is a bit experimental.

*****

And so that’s where we are today.

My apologies for writing such a novel, but the past few weeks have been quite a roller coaster ride, to say the least.  It only makes sense to keep those closest to us in the loop, and we will definitely update once we have next week’s results.

Thank you to all of you who have reached out, offered to help, listen, provided information, or just generally cared enough to be present during the craziness we’ve been trying to manage.

I know there’s only more crazy to come in the next few months, but it certainly helps to know that we have such an amazing support system, as always, and without fail.

I love you guys, and this kid will too.  :)

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To All Who Still Wait…

Pregnancy is a state of flux, and understandably so.  So much is changing that sometimes it makes my head spin.  The night-and-day differences in my life now versus my life a year ago are cuh-RAZY.  Sometimes I can barely comprehend it all.

As an infertile, there was this thing pregnant moms did that always annoyed me – more or less from jealousy, I suppose.  You know when a pregnant lady is in mid conversation and then suddenly her face goes blank?  She takes on this inward gaze, and maybe her hand travels to her belly of its own volition.  It’s just a fleeting moment, and then she’s back with you, but it’s there.  You don’t know where she just went, and it hurts when it’s not you and you can’t understand what just happened.

Now I understand.

There’s this movement inside of you that feels like a little fish swimming around (or sometimes, like a nice hard kick to the spleen), and you subconsciously reach out to still this little being, or feel more intensely so as to be more a part of your child’s movements.  You aren’t seeing what’s before you, but what’s within you.  You aren’t looking at the present, but the future, when that child will be in your arms.

It’s one thing I’ve grown to love, and yet another way that life has changed so immensely for me.  I tell you about that so that I can next tell you about this…

I sometimes think about those dark, intense moments of frustration, sadness, disbelief, anger, fear, and grief during the thick of infertility.  During those times, I would think to myself about the future where I had a child of my own in my arms, and I’d wonder if future me would ever look back at those dark moments and remember what it was like.  Those thoughts were what kept me going.  The thought that in the future, I could be happy and complete, and that the past wouldn’t have impacted me the way I worried it might.

In those dark moments when all seemed hopeless, the future – THIS future – was what kept me putting one foot in front of the other for one more day, one more month, one more year.

And so I say to all who still wait – there is hope.

I can’t tell you that your future will definitely see you with a child in your arms, or if it will, how long it might be, or that you won’t struggle and suffer and grieve on your way to that future, but I can tell you that the old cliché is right: it’s always darkest just before dawn.

I used to hate hearing that… It’s almost like your great-grandmother’s version of “everything happens in its own time, honey”.  It was annoying to think about, but from here I can see how true it is.

The problem with the statement is that we have no idea how close to our journey’s dawn we are at any given moment.  In the first couple of years we tried to get pregnant, I thought I was a month away EVERY MONTH.  I figured one month must equal one hour ticking by on my journey’s clock.

I was wrong.

So maybe each hour that ticked by was a year, but I had no way of knowing that back then.  It was dark all those years, and it got darker as time went by.  The problem is that when it’s dark all around you, how can you really tell if it’s “darkest”?

The truth is that you can’t.  You lose sight of lighter days with which to compare your current state.  It’s all objective anyway, right?  The only way to really know if you are currently in your darkest days is to come out the other side, into the light.  Hindsight.  Ugh.

And so I say to all who still wait – the light is out here, and you’ll find your way through the dark.

I just wish I could tell you how long.

And the truth is that I can’t.

But you know what?  Each of our journeys is unique to us.  I needed to wander in the dark for five years.  Maybe you can do with less, and maybe it will be more.  Maybe your journey won’t end with a baby, but a new take on what a complete life can be for you.  Maybe a child will come to you in a way that you never expected, shining a blinding light in your darkness and rocking your entire world to its core.

The awful beauty of it is that it’s not for us to know.  We each have to live it for ourselves.

All I can tell you is to live.  Survive.  Fight, advocate, and strive for better treatment in whatever way works best for you.

Hope, dream, and don’t let go of that lightness inside of you that still believes.  Ever.

None of us can know what is right around the next corner, nor how the next day, month, or year in our journey will play out.  What we must always remember, however, is that we are more than the paths we’ve walked.

.

And so I say to all who still wait –

.

You are more than your circumstances.

You are defined only by the actions you take.

You are strong enough to not let this turn you hard.

You are capable of doing more and being more.

You dream for a reason – do not ever give up on those dreams.

.

You can choose hope or hopelessness,

but you, your dreams, and your future,

are worth so much more than giving up.

You are worth your hope.

.

And so I say to all who still wait –

Let your hope shine as a light in the darkness. 

It won’t tell you where you are on the path, but it will allow you to put one foot in front of the other for one more day.

And really, every step forward is one step closer to our dreams.

.

And so I say to all who still wait –

Keep moving forward.

Don’t ever stop.

 

hope

Status

Viability and Uncertainty

Monday, September 15th, 2014.  25w4d.

I know it’s been quiet over here, and partially it’s just been because life, as it will do, has become so overwhelmingly busy the past few weeks that it’s taken every last ounce of effort on my part to even keep in touch with people who call or email me.  It’s been cuh-RAZY.

The other part has to do with the fact that there are some things happening that I’ve been trying to process, trying to work through, and attempting to handle completely within the confines of marriage, but I’m finding that I – we – may need help.

And so, as I always do, I’m turning to you, my readers and the wide reach of the interwebs, for help.

First, let me tell you the story of how something totally common I’d never even heard of is currently possibly endangering our precious Jelly Bean…

*****

Nearly six weeks ago at our 20-week anatomy scan, the doctor said that everything looked great with the baby, just that she was measuring a bit small in a couple of areas, including her head measurement.  Since neither the husband or I are particularly large people, we, and the doctor, chalked this up to genetics and were told it likely wasn’t a reason to worry.

Since Jelly Bean fell below a certain percentile in her head circumference, however, we were referred to Maternal Fetal Medicine for a follow-up scan two weeks later.  Every indication was that with the better machines, two full weeks, and a different sonographer, baby’s measurements would probably show up at the second scan well within range.

Well, that wasn’t the case.  Baby’s head measurement was still small, although her brain looks perfect, and there was an echogenic or bright area visible in her bowel.  These two findings can be markers for all sorts of genetic abnormalities, Downs Syndrome, cystic fibrosis, or signs of infection, as I was told when I was ambushed by three perinatologists and a genetic counselor moments after my ultrasound ended.

I was stunned that this was such a big deal, but carefully weighed through the options presented to me and ultimately decided to have a more advanced genetic screening panel (Verifi) and an infections TORCH panel done that day.

The Verifi results came back around a week later, and all indications are that this baby girl has an extremely low risk for trisomies and other genetic issues for which I was tested.  This is pretty much in line with what my first and second trimester screening labs showed, as well, so I was relieved.

The TORCH panel also showed that I am not infected with toxoplasmosis, parvovirus (the human version of this strain is commonly called Fifth’s Disease), or the other infections on the panel.

Except one.  Cytomegalovirus, or CMV, is the one infection for which I tested positive.  The two-part testing showed that I have been exposed in the past, but also that I have had either a recent infection or a resurgence of an old infection.  CMV is one of the herpes family of viruses like chicken pox or shingles, and can lie dormant in your system after exposure for a long time.  Occasionally, pregnancy can cause it to reemerge, and many times without symptoms.

I had never heard of this infection before.  I’ve heard of toxoplasmosis – that’s the one you can get if you are in contact with the cat litter while pregnant, and I’ve heard of parvovirus because our dog had it when I was in high school – although I didn’t realize there were different variations that humans could also get – and not from dogs, from each other.  But CMV?  Never heard of it.  So why were these doctors talking to me like I should be terrified?

Well, upon researching on my own, I discovered that when a woman is exposed to and infected with CMV for the first time during the first half of pregnancy, there is a 60% chance her unborn baby can also get the infection, called Congenital CMV.  There’s currently no real treatment (other than one that’s being done on a rather experimental level), and the infection in the baby can cause a range of things from hearing and vision loss, to profound mental and physical disabilities, to stillbirth and infant death.

It can also cause nothing.  There’s just no way to know.

There are odds and chances and percentages, but again, no way to know if the baby does, in fact,  have the infection until birth, and no real way to know how this infection, should she have it, will impact her life.

At some point, while all this was happening, I reached 24 weeks – viability.  Except, in this case… is it?  It’s hard to say.  Either way, I’m amazed to have made it this far, and I hope and pray every single day that the little lady ninja-kicking my spleen on the regular will be strong and healthy.  She’s a fighter like her mama, that much I know for the sheer fact that she even exists.

*****

So what now?

Good question.  Upon doing hours and hours of research, I found a resource with a children’s hospital in Texas that specializes in CMV in infants and in pregnant mothers.  I found that there is a blood test that can sometimes help determine if this particular infection is more than six months old, or less.  The test isn’t exact, so it may be inconclusive, but it’s a risk I’m willing to take.  I had the labs run almost two weeks ago, and the results should be in soon…

From there, if I’m able to determine that I likely contracted the illness prior to pregnancy, I can perhaps worry a bit less.  If the test shows that I likely did become infected during pregnancy, then I will have to move forward.

Forward with what?

I don’t know.  All I know is that I’m currently being seen by a very small hospital Maternal Fetal Medicine department, and not even with the hospital chain I wish to deliver with in this area.  There are some insurance politics at play here, but I may have to force the issue and skirt around my OB’s office to see a more regional specialist.  From there, I hope to secure treatment through a doctor and hospital with a high-level NICU, because my baby will have to go through a barrage of tests after birth to find out if she has this infection, and if so, what – if any – symptoms she may be showing.

Another thing to consider is that there is that little experimental treatment that I mentioned before.  It’s not done regularly – my doctor here had never even heard of it and assured me that no one in this area would attempt it (how he knows that is beyond me…) – but it IS done, and with great success and little risk, actually.  I would like to find a MFM doctor who might consider it, and I’m willing to commit to a hospital over an hour away from my home to make that happen, risky though it may be to consider having to travel that distance in the winter to deliver.

On one hand, I feel like I have zero options – wait until the baby is born, have her tested, and plan your life at that moment around those results and whatever unpredictable events may occur thereafter.

On the other, I feel like there are so many different directions I can go to search for help – and I do feel that I need to search for help, because I feel that I’m very clearly only getting the one “wait and see” option from my current providers.

All of this uncertainty and feeling that I’m left to advocate for myself, and my baby, completely on my own is so reminiscent of what I went through while struggling with infertility.  It’s familiar, and disheartening at the same time.

I blame myself, although the doctors say there’s no way for me to have known I was exposed to this virus.  I think they don’t realize that I blame myself more so for finally, after so long, just being happy.  I forgot all about that other shoe dropping, and when it did, I was completely broadsided.

*****

So here we are.  Like every pregnant mother, I’m hoping and praying for a healthy baby with an easy delivery, but unlike every mother, I’m also hoping and praying with every fiber of my being that this baby will test negative for an infection that could make her little life very difficult, and worse, even very short.

The doctors tell me there’s no use in worrying, and that 60% of babies don’t get the infection.  They tell me that the abnormalities that showed up on the ultrasounds they’ve seen could be things that just correct on their own and may not be directly related to the infection at all.  They tell me that I may end up with a perfectly healthy baby who has a perfectly normal life.

I wish I could just blindly accept that, but for me, as it’s always been, I can’t just sit back and live with those what-ifs.

If there’s something that can be done, even on an experimental level, I’m going to pursue it.  This baby is due in roughly 100 days, which means that I have around three months to do everything in my power as a mother and informed patient to ensure that she is given every chance at a normal life.

So here we are.  A new normal, yet again.

Different, but so familiar.

And yet, there’s so much more at stake now…

But one thing’s for sure – I will never, ever give up.

*****

If you have experience with CMV during pregnancy, or have a child impacted by Congenital CMV, please let me know.  Also, if you have, or know someone who has undergone the experimental treatment for CMV on babies in utero with Cytogam, please reach out.  I am desperate for information on both of these subjects. 

Thank you!

Status

Let’s See How Far We’ve Come

Tuesday, August 12th, 2014.  20w 5d.

It’s hard not to worry, even now when things seem to be going so well.

This has been an amazing year for our little family.  A surprise miracle pregnancy, a raise and promotion for me, and recently, a raise and promotion for the husband, too.

We’ve accomplished so much, and yet it all feels so delicate, so tenuous.

With all of that good in the air, I still worry over this babe every day.  I really try to enjoy each new day and what it brings to me as far as life and this pregnancy are concerned, but it’s sometimes hard to escape that dark cloud of worry that follows me at a distance.

At Jelly Bean’s anatomy scan, everything looked great according to the sonographer.  She was gracious and talked to me the whole way through, pointing out every part she measured and explaining why that was important.  She didn’t talk down to me, and it was nice to just feel like an observer rather than a test subject for a change.

After the ultrasound, I met with one of the doctors in my OB office’s rotation.  There are four of them, and this one I like very much.  She’s a sweet little lady, but she is very clear in her instructions and explanations.  She doesn’t dote, but has a way of making her patients feel special.

I asked about my second trimester screening blood work that I’d had done the week prior, and she said that it had come back totally normal.  Based on the first trimester screening labs, the NT scan, and the second trimester labs, she says the risk of this baby having any kind of chromosomal abnormality is very low.  That was a relief to hear, as it was yet another thing I’d been worrying about.

The doctor wanted to talk to me about the ultrasound report from my anatomy scan.  It looks as though our little Jelly Bean is measuring a bit petite for her age, which I suppose shouldn’t surprise me given that the husband and I were both small babies, and not very large adults, come to that.  Of course this is yet another thing that consumes me, however… I’m told that she will likely catch up and that it won’t be a problem, or that she will just be a petite baby, which again, shouldn’t be a problem.

And still.  I worry.

The what-if’s are terrible.  I try to control the amount of time I spend letting myself go down those roads, but sometimes my mind just gets away from me.  I’ve run these finding past my sonographer friend, who assures me that as long as baby girl is growing consistently, there shouldn’t be an issue.  She may just be a little peanut.

It’s that gray area that’s implied in the word may that keeps me awake at night, however.

Well, that, and my bladder.

And so, after yet another restless night of worried thoughts and compressed organs keeping me awake between short bouts of fitful sleep, I started this morning a little rough.  I was tired and cranky and hungry and I wanted chocolate milk but I’ve consumed the gallon and a half we had in the house in the past three days, so then I was straight-up hangry.

And then something really interesting happened.  I turned on Pandora on my phone while I got in the shower, and every song that played throughout my morning ritual was trying to tell me something.  Gratitude, optimism, appreciation – surprising lessons from late 90s/early 2000s alt rock, sure, but they were there speaking to me nonetheless.

At some point during Jimmy Eat World’s The Middle, I started to get the picture.  I mean, that song was my infertility mainstay, and listening to the lyrics now not only show me how far life has brought me since those days, but also that those lessons are still completely applicable today.

It just takes some time
Little girl, you’re in the middle of the ride
Everything, everything will be just fine
Everything, everything will be all right, all right 

Just to drive the point home, the last song I heard before I got out of the car at the office this morning was a Matchbox 20 song, Let’s See How Far We’ve Come. 

Point made.

*****

I figured it was time to indulge the Powers That Be and really truly reflect on where I’ve been, and where I am now.

Over five years, three OB doctors, four reproductive specialists, two acupuncturists, four recommendations to move on to IVF, 60 cycle day ones, and countless moments of extreme doubt that we would ever be parents later, we are just a few months from meeting our baby girl.

After months upon months of medications and Western medicine and feeling like a science experiment, I finally found some peace in the process when I gave in and gave acupuncture and Traditional Chinese Medicine a chance.

Despite the lack of hard science behind acupuncture and TCM, it was the one thing that finally made the difference for me.

On what was planned to be my very last cycle of treatment with acupuncture, during a poorly timed encounter at that, and after several days of abusing my body with poor sleep, food, and beverage choices, conception somehow occurred.

Very faint home pregnancy tests led to a very low beta blood draw, which rose slowly as well.  An early ultrasound showed a tiny speck with a tiny heartbeat, and we were given hope and cautious optimism, but still I worried… and yet – this baby has grown to the size of a petite  banana in the weeks since.

So many times I was given the sad hand-on-shoulder pat, meant to be reassuring while delivering me the hard blows of “maybe it’s time to move on”.  On to another treatment, on to another doctor, on to another pursuit in life besides parenthood. 

So many times I had hopes that were dashed, and so many times I had to talk myself into optimism when just giving up and crying it out would have been easier.

So many times I worried and stressed and lost sleep over what I thought might never happen, over what I thought might be a figment of my imagination, over what the doctor told me was there but I was afraid wouldn’t stay with me.

So many times I’ve worried, and so many times I’ve been proven wrong. 

I may be worried now, and that may never stop, but I do have faith. 

I have faith in my body, I have faith that this Christmas will be the best one of my life, and I have faith that the little lady currently delivering me tiny ninja kicks to the abdomen will come on her own time, at just the right size, and in perfect health.

*****

So, let’s see how far we’ve come?

Miles and miles, and a lifetime of needless worry. 

I’m sure five years from now, I’ll be saying the same thing while looking back on what’s changed from the time I was expecting, to the time I will be getting Lady Ninja Kicks ready for her first day of school.

We’ve come so far, and we have so far to go.

Faith has carried us to today, and will carry us into tomorrow. 

We just have to believe that the impossible can happen, because it can

And it does.

Status

Voodoo, Pt. 2

Tracy:

#TBT – Between these two psychics, they pretty much nailed the details, minus the year – you know, if that kind of thing is important.

Originally posted on Just Stop Trying and It Will Happen...:

So… In keeping with what seems to be a theme this year

I got a psychic reading.

Well… Two, actually.

They were online, and I know they could be completely made-up crap emailed to me by people looking to make easy money by lying to strangers, but whatever… I got them.

The first reading was a fairly simple one, done by a lady named Sky:

Focusing in on an upcoming pregnancy for you I see the month of April being significant. This can be in reference to the month of April 2013 being conception or positive testing or the month of April 2014 being birth timing. I feel a girl’s presence associated with this pregnancy. 
 
To simplify things a bit more I see April as conception, positive testing or birth timing with a little girl.
The second reading was far more in-depth and took a bit longer…

View original 533 more words

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