Tag: Congenital CMV
Image

How We Got Here and Where We’re Going

I’ve been working on this post in my head for two weeks now, but time really does get away from you when your whole focus is on a tiny little being that depends on you for her every need.  I seriously don’t even know what day of the week it is sometimes, which is not a complaint, but a commentary on how completely my life revolves around hers…

Clara is six weeks old today.  In some ways, it seems like she’s always been here and there was never really a life before she arrived, which is of course far from the truth.  In other ways though, it feels like just yesterday that they were placing her in my arms for the first time.  I’ll share with you all how exactly that came to be in this post.  Just fair warning, I was in the hospital for a full five days, so this is a looooooooooong post detailing all that occurred.

Oh, and as a reward for sticking it out, there are also lots of pictures.  🙂

*****

The husband and I checked into the hospital on the evening of Thursday, December 4th to begin the process of inducing labor at 37 weeks pregnant.  Our doctor with University of Michigan’s Maternal Fetal Medicine clinic suggested inducing between 37 and 38 weeks because of some intrauterine growth restriction, and because due to the CMV infection, it was deemed safer to see how baby was doing once she was on the outside than to risk any more time not knowing what she was up against on the inside.

Once we were in our hospital room – a really nice room where we were told we could labor, deliver, and recover all in one space – a nurse came to place my IV and hook me up to the baby monitor.  We were told that it was a very busy night in labor and delivery, and that as soon as a doctor was free, they would come and place the cervical softening agent that would start my induction.

It ended up being around 1am that a doctor was finally free, so once the Cervidil was in place, I was allowed to get some rest.

Rest is a very kind term for what happens when you close your eyes in a hospital, by the way.  There is some sleep that happens out of exhaustion and necessity, but it’s not ever really restful.  There are nurses and doctors and residents who come into your room every hour or so – sometimes more – to check your vitals, get you beverages, monitor the baby’s heart rate and your uterine contractions, and sometimes just to introduce themselves at the beginning of their shifts.  It’s necessary I suppose, but I don’t think I truly rested the entire time I was in that hospital.

The next morning, my MFM doctor came by for a visit.  She checked in to see when the Cervidil had been placed, and then checked to see if I had made any progress in dilating.  I was dilated to 3 by that point, and she was happy with that.  She gave the nurses permission to feed me (before then I was on a liquid diet, slowly starving to death on broth and jello), and said she would check back on me in a few hours.

By the time the Cervidil had been in place for 12 hours, I had not progressed any further than a 3, so once the Cervidil was removed, the doctors started me on the IV Pitocin to get my labor moving.  Some contractions had begun toward the end of my round of Cervidil, but once the Pitocin kicked in, I started feeling them.  As the Pitocin level was turned up hour by hour, the contractions got progressively more noticeable.  Some of them started to become painful by Friday night, but my dilation to 3 still had not progressed.

At this point, the doctors gave me a break from the medicine.  It was probably 3am on Saturday morning when I took a shower and bolted down a cold sandwich, yogurt, and some fruit that the nurses managed to rustle up for me.  I felt much more human by the time I got back into bed, and the doctors restarted my Pitocin drip, hoping that the break from the meds would kick my body into a more active labor.

Spoiler alert:  They didn’t.

I spent all day Saturday with my Pitocin level being cranked up hour by hour, and every cervical check would yield the same results: dilated to 3.  I was tired, hungry, in a tremendous amount of pain, and my nerves were frayed to say the least.

Around 6pm, my MFM doc came back to see me before the end of her shift.  She was happy with the progress I had made, but unhappy that it had sort of plateaued.  In a very calming and reassuring voice, she talked to me about how she thought the next 12 hours would go, all the while gathering up an assortment of instruments from a cupboard behind a curtain.  When she emerged, she told me it was time to have my water broken.

It’s funny how often you hear that someone has their water broken, like it’s no big deal – and really, in the grand scheme of things it isn’t – but when it actually happens to you, it’s a very different set of thoughts that run through your mind.  Panic, to start…

It took literally less than a minute for the doc to break my water, and then she was off to enjoy her night.  She said she’d be back in the morning to see me, and she thought I’d have a baby by then.  Funny, because she probably hadn’t even reached her car in the parking garage by the time my contractions started getting REALLY painful.

I mean, I’d been contracting for a solid day and a half at that point, much of the time in a great deal of discomfort, but a few minutes after my water was broken, SHIT GOT REAL.

Now I’m not totally granola crunchy, and considering the high level of medical intervention I’d already required with this pregnancy, it’s not like I could object to medications,  but I was really hoping to avoid pain meds with labor.

That resolve crumbled within a half hour of my water being broken, and I sent the poor husband scurrying out of the room to get that epidural lady NOW.

Ain’t nobody trying to be a hero.

The epidural turned out to be just what I needed.  I was numb from the waist down by 8pm, and finally fast asleep fifteen minutes later.  I slept soundly for the entire time the husband was watching a football game.  The game ended around midnight, and a few minutes later, a doctor came in to check my cervix.

Oh, side note:  “Check my cervix” is another one of those terms that is taken far too lightly in my opinion.  It’s not like they just look up there with a flashlight… oh no.  You’re basically being fisted by a trained professional, and some of those resident docs have less training than others.  There was one doctor I called Dr. Sausage Fingers that was particularly lacking in experience… She was not my favorite.

Anyway, at around 12:30am on Sunday, December 7th, a doctor checked my cervix which had been at a 3 only four hours previous.  She checked, checked again, pulled the sheet back over my numb bottom half and said, “How about we go have a baby?”

It was go time, apparently.  The combination of my water being broken and the epidural had done the trick, and not only was I fully dilated, but the baby’s head was engaged and ready for me to start pushing.

Things moved quickly after that.  A whole brigade of nurses and doctors came in and started rearranging the room.  The poor husband just stood out of the way and waited for instruction.  Within minutes, a nurse was heaving my dead legs into the stirrups and they were coaching me on how and when to start pushing.

I pushed clumsily through the first contraction.  The baby was moving around too much and the monitors kept losing her heart rate.  The second contraction they lost her completely, and she had moved into a transverse, or sideways position in the birth canal – they want babies to come out face down, apparently.  The nurses moved me onto my side to encourage baby to rotate, and I stayed that way for a couple more contractions.

Once she had rolled to the proper position, I started pushing again.  This time, the doctors were more concerned that not only were they losing baby’s heart rate on the monitor, but also that what they were able to see appeared to be dipping quite low while I pushed.  They placed a monitor on her head to help them keep a better eye on things, but it was apparent rather quickly that her heart rate was dipping dangerously low when I pushed.

The doctors started rushing around the room and talking to me about possible “manual intervention”.  I was covered up and moved down the hall to an operating room in case it was necessary to perform an assisted delivery with suction, forceps, or surgery.  It was a total chaotic whirlwind, and in the midst of it all I remember was yelling at the husband to put on some damn shoes as he stood there in his pajama pants with a mask and gown in his hands, and a look of absolute disbelief on his face.

The operating room was only a few doors down from my room, so I was in there and being moved to a table rather quickly.  There had to be fifteen doctors and nurses present, and it was overwhelming.  Someone put an oxygen mask on me, and the husband was nowhere to be seen.  Eventually he came in, wearing a gown, mask, and hairnet, and stood by me while a doctor asked for my signature on different release forms in the case of surgical intervention.

I was in position to start pushing again a minute later, and after maybe three contractions, a squishy, tiny baby was placed on my chest.  It all happened from the first push to the last in less than an hour.

At 1:15am on Sunday, December 7th – Pearl Harbor Day – Clara Noelle arrived.

There was a whole lot of crying after that.  Her, me, the husband… More the husband and me, really.  Clara was relatively stoic about the whole thing after her initial entrance into this world.

1546370_10154898157840092_581911951235355776_n

10478539_10154892672260092_8060589238240895476_n

Of course I was thrilled to finally have my girl in this world, and I was happy to be done with the whole labor thing, but I was terrified of how the CMV infection would impact her.  I knew that there would be some initial examinations right there in the delivery room, and it had been made clear to me a few times that there was a chance Clara would need to go to the NICU.

One of the delivery doctors was talking to me about having to place a stitch because my stubborn little miss turned at the last second and came out face UP, thus tearing a rather sensitive part of my nether region.  (Yikes.)  I only vaguely registered that conversation because I was trying to hear and see what the doctors and  nurses were doing with my baby on the other side of the room.  I had sent the husband to go with her wherever they took her, and he was taking close to a thousand pictures, but no one was relaying anything to me.  Finally, a nurse yelled over that she was measuring five pounds, two ounces, and 17.25 inches long – a petite little lady,  but a very  healthy one!

10380974_10152639162754164_1220752480822987750_n

I was in so much shock that I barely understood when they told me we were going back to our room – all of us.  From there, we were left alone to spend some precious moments together as a family.

10846234_10154898838955092_4215201164478561653_n

At one point, the exhaustion overtook me and I slept while the husband spent time with his girl. And apparently took this picture of the three of us – our first family photo, lol.

Things after that started blending together into brief moments of activity.  A nurse came in to help me attempt to breast feed for the first time.  Someone gave me some yogurt to eat, which I promptly threw up.  The husband called his mom, crying his face off, to tell her that her newest granddaughter had arrived.  I couldn’t keep it together, so I texted my parents, my brother, and my best friends.

At 2am.

Considering nearly all 2am texts are typically drunken texts, it was a great pleasure to be able to send that one after so many years.

We slept a bit here and there.  Eventually I was able to eat solid food.  A nurse helped me to the bathroom, and considering I had very little control over my legs and urinary tract, it was a harrowing experience for all involved.

By the time visiting hours rolled around, our families started arriving.  I don’t remember who was there first… I know that my parents and sister had stayed at a hotel in the hospital since the place we delivered was about three hours from their house.  Oh  yeah – U of M has a hotel IN THE HOSPITAL.  What the what?!  It was nice knowing they were close by!  My best friend had stayed close by as well – she lives in my hometown, too – and she was there that morning to see us.  The husband’s parents came up from Toledo to visit and fawn over our girl.  Another of my besties drove FIVE HOURS to see us, too!  Clara has had a fan club since long before she was born (or even conceived!), and it was so nice for her to finally meet some of them!

Despite the happy visits and surreal firsts that happened all day long, there was still a lingering tension over our little family, knowing that we needed to see a few specialists to determine if the infection had injured any part of our girl’s brain or central nervous system.  Urine testing from her first few hours of life indicated that the infection had passed into her system, as we thought it would, but how that would impact her was yet to be determined.

The eye exam was first, and she passed with flying colors.  We will still need to see an ophthalmologist regularly to be sure her vision isn’t deteriorating, as can happen sometimes with CMV, but initial testing on her first day, and a follow-up visit two weeks ago showed no visual involvement from the infection.

One down…

Next was her hearing.  Again, we will need to monitor this regularly as she grows to ensure that she doesn’t lose hearing as can happen with CMV, but her hospital testing was perfect.

Hearing and vision – check.

The last specialist we waited for was from neurology.  Because Clara came on Sunday, there was no one available to perform the necessary cranial ultrasound immediately, so we were told they would come by to see us on Monday morning instead.  The sonographer was not able to give us any results of course, so we would need to wait until the doctor could interpret the findings and come back to speak with us.

When a resident from neurology did come back, we were told that they saw some calcifications in Clara’s brain.  What that would mean for her was yet to be seen, and we weren’t given much information right away.  The resident said that the head of pediatric neurology would come back to speak with us more, so until that point we had to just wait and try to digest the information we were given.

It was late in the day on Monday when the neuro attending and his team came to see us.  The nurses had arranged for our discharge that day – for BOTH of us to be discharged, together! – but because of the lateness of the neuro visit, we opted to stay one more night to avoid driving home in the dark and snow.

The visit from the neuro team was surprisingly relieving.  He told us that the calcifications seen were small, few in number, and in an area where there wasn’t a whole lot of very important things happening.  All in all, a best case scenario for that particular finding.  He said that he’d seen pediatric patients with worse findings than ours who he had finally had to discharge from his care because there was absolutely nothing wrong with them that they needed to see a pediatric neurologist.

It was recommended to us by our pediatric infectious diseases team that we start Clara on an oral antiviral medication that’s been shown to have really wonderful results in congenital CMV babies.  The newest study shows the benefit of a longer treatment with the medication, so we’ll give this antiviral twice a day for six months, with blood work monitoring throughout that time to ensure the medication isn’t affecting her immune system at all.

An amazing relief, and an excellent treatment plan, although we know that only time will tell if our girl has any lasting effects from the infection and the calcifications.  We have been set up with a full roster of follow-up appointments for the next six months, and we know that we are in excellent care with Clara’s team of doctors.

Finally, on Tuesday, December 9th, the three of us went home as a family.

10428602_10152642905049164_2072005832112027743_n

Since we’ve been home, it’s been a whirlwind, as they tell you it will be.  Having a baby during the holidays is especially crazy, but we’ve enjoyed every minute of it.  So far, Clara has had her first Christmas, was there to celebrate our sixth anniversary with us, rang in the new year, celebrated her one-month birthday, and enjoyed her first MSU basketball game (on TV of course) with her dad.

They won, in case you wondered.

10433150_10152658934449164_6710432565467903520_n

10865793_10152682481444164_3449371008049667469_o(1)

10411257_10152732279144164_6167761308242730406_n

10407993_10152704467594164_7297108816429659155_n

Most of our time has been more low-key, though.  A whole lot of this.

10882284_10152688652274164_1828317561761320465_n

10882383_10152677507319164_263542284442913166_n

All in all, things have been amazing.  We have no way to know what the future holds for us or for Clara, but we’re optimistic that our girl will have a full, happy, and healthy life.

A few things are certain, however…

We are so incredibly blessed, and so incredibly in love.

I mean, how could you NOT be?  🙂

Advertisements

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

Read More

Rate this:

Status

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.  🙂

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!

Nuala Reilly: A Writer's Journey

I'm just a girl, standing in front of chocolate, asking it to love her.

Whole Milk and Half-Crazy

Excerpts from an exceptional(ly ridiculous) life.

Motherhood & Everything Else

pregnancy, motherhood, marriage, and life after miscarriage

adultyish

hello, please advise

Are You There, Stork?

It's me, Katie.

Summertime Sadness

A safe space where I discuss the racing thoughts in my head, personal struggles, and day-to-day activities while struggling with mental health and mood disorder issues. My personal goal is to reduce the stigma that comes with mental health and mood disorders, by talking more about it.

Something Out of Nothing

From 0 sperm to a family of three

A Little Bit More

Life, Laughter, Love and Everything Inbetween!

Project Tiny Human

Two lesbians walk into a fertility center.....

The Ritz Saga

Tongue tied and twisted just an earth bound misfit I

She Patiently Waits

My Journey Through IVF