Tag: CMV in pregnancy

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

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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.

 

Pumpkin_pie_slice_H

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

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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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