Day: October 14, 2014
Status

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!!

Status

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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