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A Day That Will Live In Infamy.

This blog, and all of you reading it, mean the world to me.

Not a whole heckofalot can keep me from this space, so you have to know I’ve had a very good reason for being absent these past two-ish weeks…

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This is why.

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Meet our miracle, Clara Noelle.

Our little Pearl Harbor Day baby, born at 1:15am on December 7th.

5lbs 2oz, 17.25 inches

Healthy.

Happy.

Heartbreakingly beautiful.

And most importanly, HOME.

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This is why, guys.

Never, ever, ever give up.

<3

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Thirty-Four (and Thirty-Seven)

Wednesday, December 3rd, 2014.  36w 6d.

So yesterday was my thirty-fourth birthday.  I really didn’t do much to celebrate, since there is so much else happening at the moment, but it was a nice day regardless.  Some things were accomplished around the house and office, the husband sent me some gorgeous flowers, and I got lots of calls and hugs and stop-bys filled with birthday wishes.

In continuing the trend of eventful days, today is my last day at the office for a while.  I’m sad to leave, but I know everything is in good hands, and I know I’ll be back in early March to reclaim my workload like the martyr-y workaholic I am.  It’s also our office holiday party today, so there’s a lovely festive feeling in the air around here.  Makes for a nice last day…

Tomorrow evening at 37 weeks pregnant, the husband and I check into the hospital to start the likely very slow induction process.  We’re hoping for a baby by Sunday, but it’s hard to tell how this will all go.  There are many unknowns with the cCMV infection as well, but we are hopeful that baby girl will have received the benefit of the IVIG infusion treatments, and we know that we are in the best possible hands at the University of Michigan.

So, to recap:  I started this week as an employed thirty-three year old wife, and will end this week (God willing…) as a temporarily unemployed thirty-four year old mother.

Life is full of twists and turns, and sometimes the rug gets pulled right out from under you, but you know what?

Life is good.

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Thankful.

Wednesday, November 26th, 2014.  35w 6d.

I know… I have owed everyone an update for nearly two weeks now, especially after my last cliffhanger of a post.  In my defense, I did actually write one, and while I was wrapping up the last of it, my browser crashed and I lost the whole thing.  And then I was mad, and I was tired, and just felt so defeated by technology that I didn’t come back to it till now.

Anyway, here I am, with updates galore!

When I last posted, the doctors were worried that baby girl was becoming anemic, due to the rapid pulse in her brain.  I was scheduled for a follow-up scan and instructed to report any noticeably decreased movement.  The anemia could be very dangerous and would warrant a quick delivery to ensure our girl didn’t suffer any decline in health.

At the follow-up, the doctor said that she didn’t see anything concerning like she had the week before.

*audible sigh of relief*

She also said that she was very pleased with everything she saw, and that she felt comfortable keeping me pregnant, at least for a couple more weeks.

*WHEW*

So… wait.  What does a couple more weeks mean, exactly?

Turns out she wants us to deliver around 37 weeks, and no later than 38 weeks.  Baby will be in better hands on the outside as far as treatment and testing, and once we are past the pre-term stage, her odds of being a healthy kid greatly increase.

The plan is this:  we will check into the hospital late next week, arriving in the evening to start the induction process.  We’ll start with a cervix-softening medication overnight, which can take some time to work, and then once that has made the progress they like to see, they’ll give me medication to help induce contractions and labor.

It can, and likely will be, a long and drawn out process.  We are hoping for a baby by December 7th, but I’m not placing any bets.  Our girl seems to do everything at her own pace, and she likes to keep us guessing… I don’t see that changing any time soon.  ;)

Since that appointment, I’ve had another NST at my OB’s office in Toledo, which looked great.  I also had a second follow-up at UofM yesterday, which was part NST and part ultrasound, both of which also looked beautiful.

While we still don’t know if or how the infection will impact Jelly Bean, we do know that she’s active and growing and looking great on all of the testing we have in place so far.  What will be once she’s born remains yet to be seen.

What I can say with certainty is that this year has been one of extreme joy and, at times, extreme fear for the husband and I, and while things have not always been sunshine and roses, we are extremely thankful for what we have:  an amazingly supportive family and group of friends all over the world – including all of YOU, access to medical care and facilities that support and treat us like the most important patients they have, and finally, our little growing family and our miracle baby.

And so even in the face of some uncertainty, we are so, so thankful.

May this Thanksgiving holiday be a time of appreciation for the things you have, in spite of the curveballs life may be throwing your way.

And may there be pie.  Always, always pie.

 

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The Futility of Planning

Friday, November 14th, 2014.  34w 1d.

This is going to be largely just an update, because I both don’t have a whole lot of time to spend blogging these days, and because my mind is enormously preoccupied with trying to re-prioritize basically EVERYTHING.

So I’ve been having twice weekly non-stress tests with my OB’s office here in Toledo.  Things have been looking just fine with those, and during the Tuesday appointments, I get to see Jelly Bean on the big screen because we have what’s called a biophysical profile done along with the NST – the sonographer watches baby by ultrasound looking for certain movements within a certain period of time.  She’s been a little stubborn here and there, but mostly she passes with flying colors.

During one of these appointments about two weeks ago, the sonographer did an unofficial glance at baby’s measurements.  As usual, her head and femur measurement are about two weeks behind, which is consistent with her growth since the 20 week scan.  She could come by that genetically, or there’s also the possibility that it has something to do with the CMV infection – either way, they’re keeping a close eye on things at my OB’s office, and I’ve felt pretty content that baby girl is strong and growing and responding to the treatments.

Yesterday was my first trip back to the University of Michigan since my first infusion treatment.  It was a big, really long day, as I had many appointments scheduled throughout the day, and adding being large and out of breath, and relatively sleepless of late, made the day feel even longer.

I had my infusion appointment first.  Things went smoothly – I sat and did some work on my laptop, and the nice medical assistant brought me snacks.  I held off on snacks toward the end of the usually four hour treatment thinking I’d have time to get lunch between noon and my 1pm orientation with the UofM OB Department, but treatment went long, and I was forced to skip lunch in order to make it to that appointment – I took a grape juice to go, and still made it to OB twenty minutes late.  Ugh.

That orientation didn’t take too long, and they were able to usher me off to my next appointment – an ultrasound with Fetal Diagnostics, the specialists who have been managing my and baby girl’s care – on time.  The husband even made it in time to meet me for this portion, so it was nice to have him there for support.

The ultrasound was pretty routine.  The sonographer was nice, the measurements she took were what I expected, and then she went to run over her scans with the doctor, promising to send someone back to see me shortly.

It took a while, and I started to get nervous.

When my doctor finally came back to see us, she had me pull my shirt up so she could re-scan a particular area.  EVEN MORE NERVOUS NOW, DOC.

It turned out that what she was looking for was the baby’s heart rate measured in a certain area of the brain.  When this heart rate is very fast, it can signal that baby is anemic.  Sometimes it’s mild, and other times it can be moderate to severe.  My doctor said she was concerned, and wanted to watch this closely.

She scheduled me back to see her in a week, and told me to keep a close eye on baby’s movements – if they slow down significantly, it could signal that baby’s heart is having to work too hard due to the low blood count – something we don’t want to happen, and something that could spell even more issues for our little one.

We discussed some options, one of which being a blood transfusion for Jelly Bean in utero.  This is done occasionally, but because of its risks, it’s usually done earlier in pregnancy when the benefits of keeping baby inside outweigh the risks of taking baby out a little early.  Because I’m 34 weeks at this point, my doctor said that if things start to decline, she would probably want to deliver me early.

As early as next week, potentially.

I never planned on a 35 week baby… But then again, nothing about this pregnancy has been planned or expected.  I suppose I’m being prepared for parenthood in that way.  Yeesh.

So in preparation for this possible change in delivery plans, I was given a steroid shot (RIGHT IN THE BUM!) yesterday at the hospital, and another this morning in my Toledo OB’s office (IN THE OTHER CHEEK!).  These shots will help baby’s lungs develop a little more quickly, and have been shown to improve lung function, among some other benefits, to babies born preterm.

After all of that, and with no real time to process what we had just been told, we were off to our next appointment – again, without food – to tour the hospital’s birthing center and learn about the labor and delivery process.  It all seemed a little bit of a moot point to me, considering that I may end up skipping all of the valet car/special elevator to triage/private birthing and recovery suite business in lieu of heading straight to a delivery room or the OR as early as next Wednesday…

It was also hard for me to concentrate because I HAD NOT EATEN SOLID FOOD SINCE 10AM.  By this point it was after 6pm, and I was seeing stars.  A little apple juice and some water just wasn’t doing the trick.  The husband and I headed home (luckily he had a spare apple in his car I could eat – my hero!), and finally had some real food with honest to Jeebus protein in it.

The day then caught up to me and I promptly passed out… Oh, but not before watching last night’s episode of Grey’s Anatomy wherein a pregnant mother needs to either have a transfusion for her baby or deliver early.  The doctor chooses early delivery, and while the baby ends up fine, the mother dies in surgery.  SPOILER ALERT, by the way, if you still watch this trainwreck of a show (says the girl who STILL WATCHES IT).

So yeah.   Bad choices in skipping opportunities for food yesterday, AND bad choices in evening programming.

I went to bed shortly thereafter, where I slept about two hours or so, and then woke up and just kind of hung out online for another three.  Sleep is a hot commodity these days, but try telling my anxious, preoccupied, steroid-wired brain THAT.

So anyway, that’s the update.

Things are not going as planned… but were they ever?

I’m completely unprepared to have a baby.  You’d think that after trying for so long, that would not be the case, but seriously… I’m not ready.

I mean, I have to shave my legs… somehow!!  And the baby’s room is just wrapping up the painting TODAY.  We don’t even have furniture put together in there yet.  I don’t have a hospital bag packed, but you can bet your ass I will by the end of this weekend.  Same thing with getting a car seat installed.

My anxiety is primarily over Jelly Bean’s health, however it’s obvious that there are some basic loose ends to tie up.  I’m working my hiney off trying to get that all handled while some how “relaxing” since that’s become something I’ve told I need to do more.  LOL… Sure.  Let me just try to fit that in somehow.

I apologize for the scattered-ness of this post, but again, I’m just trying to get the information out there as best, and as quickly as I can.

Thank you all for your continued prayers, healing thoughts, good juju, and kind words and emails.  They are appreciated more than you can ever know.  <3

 

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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