A GOOD Day ...

Well, it's been a while since I've had a visit to the doctor that didn't end with me in tears, either in the office itself or on the sidewalk outside.  But today it finally happened! I left the appointment feeling lighter than I have in weeks thanks to the lack of new news from Dr. R, the new MFM.  Yessirree ... no news is good news, that's what I always say.  Or, at least that's what I'm going to start saying from now on.  Before, it was always something ... I'd dread going to Dr. G because I'd always learn some new thing, condition, complication, you name it that it became a joke between Wayne and I.  "What are you going to have this week? Leprosy?"  Who knew anymore?  

So when it became apparent during the meeting with Dr. R that we were just going to talk and discuss overall strategy, and look over Dr. T's doppler ultrasounds, I was mightily relieved.  The visit turned out to be cake!  Then on top of all that, Dr. R whipped out the cherry to put on top by saying that since yesterday's cervical length measurement was so long, I wouldn't need to go on bed rest after all unless I started to bleed or have changes in my cervix. She gave a couple of reasons for her decision, both of which I've heard before:  

1) Bed rest hasn't been shown to definitively prevent preterm labor unless you have a weak cervix.  That doesn't seem to be my case because when I go, it doesn't matter if I'm lying down or running a marathon. I just go from zero to 10 cm in record time.

2) I've got four kids and the chances of me staying on bed rest with them around are slim to none.  She's totally right. I tried to stay in bed a couple of days ago when I was still told I should, but after three hours I'd had enough of daytime TV, I went downstairs and cleaned the kitchen countertops because I thought I was losing my mind.  

So basically, if I had a short cervical length on top of my positive fFN, I'd be marched straight to my bed, or worse, to the hospital bed.  But since I've only got one out of the two, I'm safe for now.

Dr. R also told me that she wants to hold off on the corticosteroid shots until I really needed them.  She wants to time their administration to about a week before an elective C-section or, God forbid, when I go into preterm labor as the medication is most effective two to seven days after the first dose.  After that , it loses its efficacy.  Dr. R said that since things seem to kick into gear with me around the 27/28 week range, it was imperative that we get everything into place within the next two weeks since I'll be 25 weeks on Friday. 

That said, she scheduled me for an MRI bright and early next Tuesday.  Dr. R assures me that having the MRI is perfectly safe for the baby and will give a clearer picture as to the extent of the damage wreaked by that naughty placenta.  From what she saw on Dr. T's ultrasounds, it looked like in places where it wasn't a percreta, it was just a plain old increta instead.  Oh gee ... that makes it all so much better!  Regardless, she echoed Dr. G and Dr. T by saying, yup ... I'm going to lose my uterus.  Replying to my question of whether or not I'd also lose my cervix, she replied that I would, only if there wasn't too much blood "clouding the operating plane".  Okay.  Fair enough.  If you can see it, you'll take it.  If not, then it stays.  I get it.

She explained to me that as a teaching hospital, I'd have a few more bodies than normally would be present in the OR with us.  First, the delivery will take place in the main operating room. (I'm not sure if it's the main OR in L&D or THE main OR.  Wherever it is, my surgery is big enough so that it warrants something big, not the little ORs I've had in the past.)  Among the people present will be Dr. G leading the cavalry, Dr. R or Dr. P and some OB/GYN fellow and residents, the gynecological oncologist (whom I've yet to meet) and his/her team (a Fellow, a resident, and their nurses), the anesthesiology team (about two to three of them too), and the neonatal team for the baby.  From past experience, I know this last team to consist of five or six people alone.  There is always the attending, the fellow, a couple of residents, and one or two nurses.  And then there's Wayne and I ... all in all, about 20 or so bodies watching our little one make his debut.  I wonder if I can start charging admission ... it would be an interesting show, that's for sure.

I asked if I could be awake when he's born, to which she replied, absolutely.  It would be in the baby's best interest if he was born while I was on an epidural instead of general anesthesia; he would be less groggy that way.  After that, they would most likely put me out.  The baby would go up immediately to the NICU, since that's where all babies born before 35 weeks need to be if they're born at NYU, for evaluation.  Wayne could stay until the baby was born but then he'd have to leave the OR and wait outside.  This is actually something my husband, the sicko, is disappointed about.  During the Weet's C-section birth, he shocked everyone by standing up to look over drape and watch them work on me because he wanted to say he knows me inside and out.  Like I said, sicko.

Dr. R also explained that prior to surgery, the oncologists would probably want to insert surgical stents into arteries and ureters to control hemorrhaging and to illuminate the "plane".  Because so much blood is involved during an accreta/percreta surgery one of the common mistakes is to accidentally nick one of the ureters.  If that happens, then you're F---ed.  After the uterus is removed, the oncologists will then shoot methotrexate, a chemo drug into placental blood vessels around the bladder to kill them and hopefully shrink whatever tissue is left in, on, or around that organ.  She reminded me that I will most likely lose a lot of blood and will require several, if not more, transfusions during the process.  I told her that my good friend, Barbara, wants to hold a blood drive for me.  Dr. R thought that wasn't a bad idea, but we're limited with the issue of freshness of the supply since we don't know for sure that I wouldn't need it prior to 34 weeks.  Plus, she wants to wait until the MRI results come back to see what it is that we're going to be dealing with ... 

So the next steps are to 1) have the MRI; 2) meet with the oncologist(s); 3) go back to Dr. G to hash out an emergency contingency plan; 4) see Dr. T again between 28-32 weeks for another ultrasound; 5) get the steroid injections; and 6) have a baby at 34 weeks.  Granted, this whole plan goes out the freaking window if the fFN test proves right and I go into labor within the next two weeks.  Not gonna lie ... that would really, really suck and you might be getting more maudlin posts from me.  

This little man just has to obey his mama and stay put for a while:  "There's nothing for you outside the womb now dude!  Stay in! Stay in!  You have all your meals served to you without even asking for them.  It's nice, warm and a 98.6 degree cozy, whereas outside it's a cold New York autumn/winter.  You can sleep when you want, eat when you want, pee when and wherever you want ... it's all good inside!"  Gosh, I hope this kid listens.

Before I go, I just wanted to thank those of you who've reached out to Wayne and I with your thoughts and prayers. Honestly, I had given up on prayers for a while because I didn't think they were working for us anymore in light of everything.  However, a good day like today was all I needed to give me that sense of hope again.  I think your good vibes did the trick.  It really meant a lot to me to hear from friends, old and new, and even those of you who I've never even met but cared enough to reach out.  It really raised both Wayne's and my spirits when we were feeling pretty low.  I hope that you're never in a position that brings you down to where we were, but if you are, you can bet your bottom dollar that we'll be there to repay the favor.  

xo,

L

24 Weeks Pregnant and I've Got Another Big Fat Positive!

It's late, the house is quiet, and I thought I'd finally write as there is so much swimming around in my head tonight that I know if I don't get it out, I'll never be able to sleep.  If I ramble, again, it's because it's late.

The past few days have been rough, to say the least. Yes, as my last post read, I was most definitely in a funk.  First, a very close family member -- who I can't name since she forbade me to outright talk about her in public, but her name rhymes with "bomb" -- was admitted to the hospital a late last week with severe heart problems.  We were all plenty worried since things were touch and go for a while ... it was made even more difficult to handle as we're so far away.  They are in California and we're 3,000 miles away in New York.  The feeling of helplessness is overwhelming.  When someone you love is in so much pain, all you want to do is to be there with them to hold their hand or stroke their brow.  As soon as I heard that they were in trouble, I called Dr. G to ask him if I could fly out there.  At first he was going to let me go as long as I took precautions and made promises not to carry anything or exert myself.  Then I had to go and open my big fat mouth and tell him that the sharp, stabbing pains I'd been having in my lower abdomen were getting stronger and more hurtful.  Well, that did it.  There was no way he was going to let me go anywhere at that point.  Open mouth, insert foot.

In the end, I know he's right.  After all, he did make me cancel the babymoon to New Orleans in early December because he said that was a critical time for me.  And now it appears it's even more so.

Today started off well enough ... Wayne and I got the kids ready for school, we shared a nice breakfast, he kissed me on the lips, and sent me off to see Dr. G for another OB appointment.  When I got there, I was already in enough of a mood that I told Gloria, his assistant, that I didn't want to know anymore how much I weighed.  So, taking a page from a wise friend of mine, I got on the scale backward and held in my stomach.  I don't know why I did that ... as if sucking in more air and tightening my muscles would make me weigh less.  This pregnancy brain is getting to me.

Before Dr. G took the cervical length measurements with ultrasound, he swabbed my cervix for the fetal fibronectin (fFN) test.  Fetal fibronectin is a protein that acts as a "glue" during pregnancy, attaching the amniotic sac to the lining of the uterus.  Fetal fibronectin begins to break down and "leak" into the vaginal canal toward the end of pregnancy.  A negative fFN test result means that you have a 99.5% chance of not giving birth within the next two weeks or so.  However, a positive result is a clue that the "glue" has been disturbed and you're at risk of preterm labor within two to four weeks.  I'll bet you a million dollars to guess the result that I got.  You got it ... a big fat positive. Awesomeness. Dr. G called me while I was driving 3 teenage boys home from school.  I should really apologize to those boys' parents for having a conversation with my doctor on speakerphone with them in the car, and perhaps giving them a lesson in the female anatomy.  Hopefully there were enough Latin words thrown around that most of it went over their heads.

Now, I've read and been told by countless of well-meaning people that false positives are pretty common with an fFN test, but you know with the way my luck has been going lately ... I wouldn't hold my breath that the results are totally wrong. Seriously though ... NICU ... three times??? This baby can NOT come this early.  I swear, I will ground him for LIFE if he does.  

The up side is that my cervix is still pretty long ... at 24 weeks and 4 days it's still measuring 3.7 cm.  (I think the average is 3.5 cm at this point.)   It's still open a little more than halfway up but the internal and external os are still closed.  I wish I had taken a photo of the sonogram with my phone camera.  It's actually pretty cool ... it looks like a broken zipper.  I've been told that it's a "dynamic cervix" which means that it changes length depending on pressure or whatever.  However, because the range since I've been pregnant has been from almost 5 cm to 3.5 cm (which is still pretty long), he actually backtracked on his promise that I'd be on bed rest at first sight of a positive fFN sign and told me it's not "immediate".

However, as always with this man who I've come to know pretty well over the last 15 years, there's always a caveat ... it being the new MFM's opinion.  Tomorrow (or today, rather, since it's now 1AM), I have a consult with Dr. R, the associate director of the OB/GYN Residency Program at NYU School of Medicine. Dr. G is obviously lining up the big guns since I also found out today that I'm only the SECOND percreta case he's seen in 20 years, the first when he was a resident.  If Dr. R wants me on bed rest after all, then he'll defer to her and off I'll go.

In any case, Dr. R will be the gate-keeper of sorts, handling the various specialists who will be on hand during the delivery, along with setting me up with the MRI and steroid shots.  It should be interesting.  I know that I was going to have the steroid shots for the baby's lungs at some point, but I guess now with the fFN the way it is, I'll get them sooner, rather than later.  If I remember correctly, I'll probably have to spend a night in L&D for that.

A few more interesting things to note, then I have to go to bed because it's taking a lot for me to be somewhat coherent now ...

1) Dr. G came out and agreed with me that last November's miscarriage was most probably a very early accreta.  That explains the 10 weeks of bloodshed.

2) If I had been diagnosed in the first trimester with an accreta/percreta, then he and any colleagues he referred me to would most likely have recommended a termination of this pregnancy.  He justified it by saying many pregnancies like mine never make it this far and almost always pose a life-threatening risk to the mother.  But then he looked at me and shook his head, "But you probably wouldn't terminate, would you?"  I replied, "Not after that last miscarriage.  It almost killed me."  (Emotionally, I mean. It was revealed from the genetic testing done on the tissue that the baby had been a girl. That's another story for another day.)

3) He said the sharp, stabbing pains are in the location of my bladder.  You know what that means ... and it isn't good.

4) My contractions aren't as often as they had been, although when they do come, they're quite painful and last longer.  I'd say that on a scale of one to 10 with the latter number measuring more pain, they're around  6 or 7 ... enough that I drop what I'm doing and can't talk while I'm having them.  Sometimes I even have to hee-hee-hee through them.  Dr. G tells me that Dr. R will probably recommend 17P again, but after that last episode, he's reluctant to go there with me again.

Oh, I almost forgot ... last night I had some really crazy dreams ... three to be exact.  With the first one, I was in an elevator that could go anywhere in the world with just a press of a button.   Somehow it could take me to Antarctica or London, but it could never send me home, no matter how many buttons or configurations of such I pressed.  I was trapped and kept on traveling, never going home.  The second dream, I was with a little girl and we boarded a subway train car that had two levels.  She didn't want to climb the stairs to the second level, but I made her because it was brighter up there and the lower car was too dark and small.  It didn't take long before I realized that the subway blew through my stop and kept going.  I couldn't get off, even after pulling on the emergency brake.  The train kept on going and going and going.  I couldn't go home and the little girl was so scared.

In the third dream, I was driving a car in Manhattan and tried to turn onto West 34th Street to head to the West Side Highway to go home, only to face a gigantic warehouse with a garage door that was closing fast.  I tried to step on the brakes to stop before the car hit the door, but it wasn't fast enough.  The car slid into the dark garage where I spent some time trying to figure a way out.  Eventually I succeeded (I forget how I did it, but I'm pretty sure I performed some MacGyver move) and started driving again.  I decided to take 36th Street to the highway which should have been a safe bet, but instead it took me onto a road ramp high in the sky near an airport.  While I saw people taking luggage out of cars and kissing each other goodbye, all the time I wondered how in the world did this pop up without me ever noticing it?  I kept driving and driving but the ramp wouldn't stop ... I saw the same people rotating back as if on a merry-go round.

Wayne says I was crying in my sleep, saying I want to go home.  I think it's pretty obvious that I'm worried and it's spilling over into my subconscious.  Any psychology majors out there who can take a better shot of analyzing my dreams?

Okay, now I'm finally going to go to sleep ... I would say "going to bed," but ever since I got home, Wayne's banished me to the bedroom and wouldn't let me get up to do anything despite my protestations that I don't have to be on immediate bed rest yet.  I spent the rest of the afternoon and evening in bed with the Weet, playing dinosaurs and singing songs from "Daniel the Tiger's Neighborhood."  Then I had a few good cries because everything is still getting to me and I'm still trying to digest and understand what's going on with my mom, with me.  There's too much to process.

Sometimes I don't think that most people get it.  I wonder if, by some of the comments I've been getting, if they think when the baby comes out early, that he'll just be smaller and spend a little bit of time in the NICU to gain weight.  If the fFN is on the money, that couldn't be further from the truth.  If he comes this early, then it will be all kinds of bad ... so many bad things remembered from Josh and Spike that I can't even list them again.  Then on top of that, I wonder if they realize that as soon as the baby is delivered, then that's when I'll go under the knife.  That's when the fun begins for me and it won't stop until months later.  (Dr. G told me it could take up to three months to recuperate, barring any unforeseen complications with my bladder.  I can just see it now.  Baby AND mommy are both wearing diapers.)  Thank goodness for Wayne.  He lets me cry as much as I want, tells me he's in it with me through thick and thin, and keeps handing me the Kleenex.  I sure am in love with that man.

Thanks for reading my ramble ... I'll try to post earlier tomorrow, when I'm actually cogent, after I meet with Dr. R.  It should be an interesting appointment.  If you recall, the last time I met with Dr. P, the last MFM, I stood on Second Avenue crying on the phone with Wayne.  Hopefully I'll get better news this time around.

xo,

L

Funk

The past 24 hours have been rough.  I think I'm officially in a funk.

Rollercoasters Aren't Always Fun

Our four-year old son's school called today around noon to tell us that he had a 102-degree fever.  So Wayne rushed to pick him up since he was on his lunch break anyway and I've been plagued by contractions all day today.  I think I overdid it yesterday because I was out and about working, then at home making cooking for seven boys, four of them ravenous teenagers. At this point, the contractions are like white noise to me ... I've almost forgotten what it feels like to not have a belly that's rock hard like a clenched fist all the time.  The pain in my right lower abdomen hasn't resurfaced too much today ... only once in a while to remind me that life can be so boring and vanilla when there's nothing to worry about.  Yeesh..  I'd really like my "bitchy" not "irritable" uterus to chill out.  Maybe it's a good thing we're parting ways after the baby's born.  My uterus and I obviously don't see eye to eye and it's only pissing me off.

Wayne and I had a nice talk last night.  He had been distant and really quiet since the doppler ultrasound with Dr. T last Thursday.  I knew that the percreta diagnosis was weighing heavily on his mind.  Sometimes I would turn around and catch him staring at me with this funny look on his face.  However, every time I asked what was bothering him, he would answer -- in that totally guy way of his -- "Nutthin."  Of course I knew he was lying.  How could there be nothing?  He just sat through two doctors' appointments within the span of four days where he was told that his wife could bleed out at any moment or be left with some serious complications.  The man was obviously sh!tting bricks.

I almost wrote about this a few days ago, but I wanted to give him some time to process everything before I did because what he's going through is also sitting badly with me.  His agita is giving me agita.  

If I had written about this before, my first line would have been, "My husband is pulling away and shutting down," because that's what he does when he's stressed.  I always rib him that he'd never make it as an emergency first responder in a fire ... we'd all be screwed.  So he's been putting around the house and his office pretty much in a daze, not saying much. One night, I found him lying on our bed holding his eyes with one hand and rubbing his temple with the other.  A few times, when my insomnia kicked in because my brain wouldn't shut off, I whispered his name in the dark to see if he was awake. He always answered me immediately so I knew he couldn't sleep either.  I think it was his way of keeping "watch" in case something happened in the middle of the night.  His macho, defend-what's-his mentality was kicking in big time. Finding out that you've got this major, potentially life-threatening condition is bad enough ... I imagine being the partner who might be left behind with five kids is pretty sucky too.  We talked about this and I joked to him that no woman would touch him with a 10-foot pole with five boys in his care, no matter what he does for a living or what he makes.  He didn't laugh.

So last night, we're watching "Masters of Sex" on Showtime. (No pervy people, it's not porn. I wouldn't write about THAT here. Ha! Surprisingly I DO have some boundaries.)  It's that show about famous sex researchers, William Masters and Virginia Johnson.  Dr. Masters was also a famous obstetrician who routinely treated infertility or high-risk cases.  It was the episode where Dr. Master's daughter, born at 24 weeks was delivered stillborn after his wife started to bleed.  (My money was on her having a previa.)  Of course, with everything we're going through, I just shook my head disbelievingly, "Really?  Serious?  You have GOT to be sh!tting me."

That got Wayne and I talking and he finally opened up.  "I haven't been this scared in years," he said.  I asked when the last time was.  "When you were down at Beekman [Hospital] with Josh.  It was the uncertainty, the lack of promises and guarantees.  I didn't know what to expect because everything was so new."

Here's the thing, even though this has been a turbulent pregnancy, this isn't our first time on this rollercoaster. When I was 28 weeks pregnant with Josh, our firstborn, I went in for a routine exam, only to be told I was 2 centimeters dilated and admitted into the hospital for preterm labor.  I was so young and green that I didn't even realize that the tightening feelings I had every now and then were contractions!  I wound up giving birth five days later at 29 weeks after having been told by a home healthcare nursing agency that I wasn't really in labor and that perhaps my stomach pains meant I had to go to the bathroom.  I almost gave birth in the cab on the way to the hospital, but managed to hold out for 15 minutes after I WALKED through the doors of the L&D operating room.

Josh in 1996, born at 29 weeks weighing 2 lbs 14 oz, measuring 16 inches.
I think he's 2 or 3 days old here.
He needed mechanical assistance to breathe for over a month.

Daddy and Josh

Then came Spike, who was born at 27 weeks after they couldn't stop the preterm labor contractions and learned that I had a uterine infection -- listeria, of all things -- causing the contractions. The doctors told me that because of my high fever -- 104.5 degrees -- that there was a good chance the baby would come out with meningitis and suffer from brain damage, or blindness, or deafness. They would have to take the baby in an emergency C-section, but even then, they couldn't guarantee a successful outcome.  We were so terrified then too.  I'll never forget how the anesthesiologist very somberly told us that because of my high fever, he couldn't place an epidural for fear of the spinal site becoming infected.  Instead, he would need to put me under general anesthesia with the severe caveat that, again because of the fever, they couldn't guarantee that I would wake up.

Here's Spikerman.  He was born at 27 weeks at 2 lbs, 2 oz, measuring 14 inches. (That's my hand next to him.)
Like all babies, he lost 10% of his birth weight in the first 3 days of life.
Unfortunately, it took him 2 weeks to gain that weight back. He's about 5 weeks old in this photo.
He was on oxygen for the first 5 weeks of life, which is an amazingly short period for someone of
his gestational age.

My sweet little  man ... 

After that, things got hazy, but Wayne was given the choice in the event something dire occurred, who he wanted to give priority to ... the baby or I.  He never told me who he chose, but I'd like to think it was the baby ... you know I don't go through all of this without something to show for it in the end.  So before I was wheeled into the OR, we cried and said our tearful goodbyes.  I hadn't seen him cry since Josh was born, eight years before.   I told him everything I thought he'd need to go on without me.  For the record, to tell someone you love that it's okay to love someone else is hard.  You really need to be at that precipice where you think there's no going back.  That's where we were in 2004; I sure hope we don't find ourselves there ten years later.  That would really bite.  

Okay. It's off to bed to go hover over my sick little Weetheart, like I always do when they come down with something. I also have to be at work early in the morning.  It's my last week!  After this, I get to breed and brood!  Egad -- whatever will my posts be like then?

xo,

L

My Pregnancy Timeline ... Does This Look Anything Like Yours?

Here's my (excruciatingly) detailed account:

6 Weeks Pregnant:  I started to spot.  Freaking out and frantic that I was having yet another early miscarriage (the last one happened at 7 weeks), I went to my doctor's office where he did a quick ultrasound.  Dr. G couldn't find a heartbeat but assured me that perhaps it was still too early to worry.  He scheduled me to come back in two weeks to re-evaluate.  Sure enough, at the next visit, there it was ... a throbbing little fleck of white and grey on the ultrasound screen.  Phew, I thought.  That was a close one. I'm given progesterone suppositories to keep my levels up since it appears that my numbers were really low with the miscarried baby ... a possible cause and effect.  

8 weeks pregnant -- and we see a heartbeat! Yay!

9-11 Weeks Pregnant:  I'm spotting again intermittently over these two weeks where every time I go to the bathroom I dread what I'm going to see there.  I go in two more times for my doctor to grab a quick screenshot of Little Baby's heartbeat to put everyone's mind to rest.  However, I find out I have a lesion on my cervix and have a colposcopy to confirm it.  Doctor G throws out that perhaps it's the lesion that's causing my spotting and to just refrain from any sexual activity for a couple of weeks if I see anything.  Because I've had three preemies already (29, 27, and 35-weekers to boot), and my uterus is classified as "irritable" (more like "bitchy" in my words), we make a plan that includes me seeing a maternal fetal medicine specialist at some point and starting progesterone injections at 16-weeks.  

13 Weeks Pregnant:  We go on our big family summer vacation to the Bahamas. (Try Atlantis Resort. I highly recommend it; it's fantastic for families and your kids will think you're a rock star for bringing them there. The only down side is the cost of food and water. Borders on extortion.)  Our rock-bottom air fare means that we have a six-hour layover in Fort Lauderdale.  I return a call to Dr. G who tells me that my MaterniT21 test has come back normal and surprise!  We're having ANOTHER BOY!  Yippee!  Everyone's ecstatic because what would we do with a girl in the family anyway?  We've still got all that time to kill so what is a family to do when they have that much free time in a different city with an awesome beach??  Of course we high tail it over to a diner, followed by a visit to Walmart, and then off  to see "Despicable Me 2" for the third time because it's the only movie in theaters appropriate for everyone.  While we're in Walmart, my pregnant bladder starts acting up and I've GOT TO GO.  

Well, you can guess the rest ... but instead of just a few drops (sorry to anyone who thinks this is too graphic, but hey, it's what happened), I'm shocked by the amount and the redness.  It's no longer a darker color which would signify some old blood, but instead bright cherry red.  I panic and call the G-man right away.  I do as I'm told and I go in as soon as I get back to New York.  After a few minutes of poking around with the sonogram and muttering a few things to himself that I can't catch, Dr. G says, "Well, the only thing I can see is that you've got a low-lying placenta and it's completely anterior.  It looks like it's a marginal placenta previa but that's not really anything to worry about.  Chances are that it'll move up away from your cervix to a normal place as your uterus expands. That's probably what's causing the bleeding."  It won't change the how the baby will be delivered as I've already had two C-sections and I'll have to have another one.  I'm listening but mostly I hear, "There's nothing wrong with the baby" and "Don't have sex."  (Poor, poor Wayne.)  That's all I needed.  I file the rest of the information away, not really thinking about it.

15 Weeks Pregnant:  I go in for my regular bi-weekly visit. Most women only get to see their doctor every four weeks but they like me so much, I get to come in every other week!  Aren't I special?  The guys at the parking garage know me well enough by now so that they routinely ask how how each visit went and what the doctor said this week.  I can make friends anywhere. This time, Dr. G sees that while my cervix is long at 4 cm, with both the internal and external os closed, at 2.6 cm it opens up and then closes again.  It looks like a broken zipper on the sonogram.  He'll send a copy over to the maternal fetal medicine (MFM) specialist to take a gander.

16 Weeks Pregnant:  I start those dreaded progesterone shots (called 17P to us in the preterm "know").  I've been on them twice before and they didn't exactly work.  I still had a 27-weeker (Spike) and a 35-weeker (The Weet). Okay, maybe it did help with The Weet but I had still gone into preterm labor with him at 31, 33, and 34 weeks, although they managed to stop the contractions at the hospital.  Man, I really hate those 17P injections. I call the woman from the medical service who's hired to give them to me Nurse Ratchett.  I tell her I've given them to myself in the past but it's against the rules for me to do so now. It must be an insurance thing. So I have to suffer through the burn of the medication because she's pushing the plunger too fast and hasn't bothered to roll the glass vial between her palms for a minute to warm up the suspension oil.  Plus, she doesn't believe me when I say that the shots are actually increasing my contractions.  No, I must be mistaken, she smiles in her smug way.  The shots don't do that ... perhaps I only think I'm having more contractions or maybe I'm giving them to myself.  Each time she leaves, I want to slam the door on her hiney and tell her not to come back because she's mean to me and she doesn't believe a word I say.  Plus, she hates my dog and makes me put her in the bedroom before she'll take a step through the front door.   I'm having some spotting this week but I'm told again to just take it easy. I'm blaming it on the 17P shots and the contractions. AAARRRRGGHHHH ... 

17 weeks pregnant:  Oh hello there Mr. Fibroid. Fancy meeting YOU in here!

17 Weeks Pregnant:  I go in for my amnio because even though I've already had a screener telling me that the baby's okay from a chromosomal standpoint, I still want the works because I'm one of those people who hate any kind of surprise.  Dr. G's partner, Dr. M is there to perform the procedure.  Dr. M's first words are, "Aha ... an anterior placenta."  He repeats what I heard at the last appointment, that it's now more like a partial previa but we still have hope since it's early days yet. He also sees a large fibroid inside my uterus that's right on top of the baby.  He's worried that it'll grow more and compete for space. From what he sees, the fibroid is right on top of the C-section scar, and the placenta is right on top of the fibroid. There are inherent issues with a fibroid but he reassures Wayne and I that they'll be keeping a close eye on the situation but leaves it at that. The delivery will be more complicated because now they have to figure out another way to get to the baby, but my main problem is still the preterm labor and contraction factors.  There is no mention of an accreta.

18 Weeks Pregnant:  I see the new MFM.  I like Dr. P.  She's young, she's empathetic, and most of all, she doesn't poo-poo the fact that the contractions are still coming on like a mofo.  She explains that the 17P shots aren't supposed to make the contractions disappear.  Instead, for some reason still unknown to the medical community, the progesterone relaxes the uterus and mitigates the effects of said contractions.  The success rate is high enough to prevent preterm delivery that it's become the standard of care in treating patients like me.  She wants to keep me on it but ixnays Dr. G's suggestion to put me on a routine calcium channel blocker to prevent contractions period.  It's approved label use is to treat hypertension but my blood pressure is so low that it would make me sick instead.  (Which, by the way, it has. I was on it the two previous pregnancies and I had never felt so bad.)  

We talk about the placenta previa.  She's the first one to mention a possible accreta.  She hasn't seen my scans, but wants me to know that based on my history, I have a greater chance than most of having a "morbidly adherent placenta," especially if the placenta is over the C-section scar.  It's something to keep an eye out for.  Again, the conversation goes back to preterm labor and the fact that I'll probably see her in L&D before I'm supposed to be there, and how I'll most likely give birth prematurely again.  I leave and call Wayne from the sidewalk across the street from the parking garage.  It's raining and I'm crying because I don't want the baby to come early. 

21 Weeks, 3 Days Pregnant:  Happy birthday to me! I'm 41 today and I'm supposed to be spending the morning in the city at a meeting with the Chair of the President's Advisory Council on Faith-based and Neighborhood Partnerships to discuss anti-human trafficking initiatives.  I can't wait!  But first, I have a new nurse giving me the injections this morning because Nurse Ratchett and I finally had a parting of ways.  This new one actually likes my puppy so I figure she can't be all that bad.  Not even a couple of minutes after she gives me the shot, my palms start to get really itchy and red. My fingers swell and I my feet feel like they're on pins and needles. I'm having problems getting words out and my stomach starts to hurt badly.  I start vomiting.  My uterus is now going haywire ... these painful contractions are pounding at me, first three minutes apart, then two.  She makes me take two Benadryls but I throw up one.  She follows protocol and calls an ambulance, her office, then my doctor, in that order.  The paramedics arrive and they rush me to the nearest local hospital saying I'll never make the 30 minutes down to NYU Medical Center where I'm supposed to give birth ... not if these contractions are coming on as fast and furious as they are.  

It's obvious when they get me to ER that this little hospital can't take care of me.  They don't even have a fetal monitor downstairs.  I'm hooked up to an IV saline bag while a nurse stands at the computer terminal pushing a stopwatch application on it every time I say I'm having a contraction.  Yep.  It's technology at its finest.  The obstetrical attending eventually arrives after about 45 minutes and manually checks my cervix. He says because it's still long and closed, he'll let me go home but I should check in with my doctor and take it easy today.  Wayne and I look at each other, aghast.  WTF?? The contractions still haven't stopped but they want me to go home?  We can't believe what we're hearing.  It finally dawns on Wayne that they don't want me there because they're not equipped to deal with preterm labor as early as mine.  They don't want the liability.  I get it but I still don't like it.  

However, before I can go, they just want to take me upstairs to take a quick peek at the baby to make sure everything's okay with him.  The sonographer enters the room with the perkiest smile that quickly get very serious as she starts moving the wand over my belly.  "Did anyone mention anything to you about an accreta," she asks.  I tell her I'd heard about it before and I knew that I had an anterior previa.  "That's not the half of it," she says. "Your placenta is attached directly to the C-section scar." She adds that it looks suspiciously like an accreta and points out the black and grey spots that speak to her, but to Wayne and I, look like, well ... black and grey spots.  She hurries out of the room and brings back immediately two other doctors who immediately start talking in loud voices.  

I hear a jumble of words ... accreta, increta, "possible percreta" ... all the Latin terminology start to swim around my head.  I had read enough about the conditions since meeting with Dr. P but now they were actually being applied to me.  I look over at Wayne and he's standing stock still, one hand holding his chin, the other arm wrapped around his waist.  I wish he was closer to hold my hand.  Instead, my I've formed a fist around the knit blanket they've used to cover my lower waist.  The doctors explain what's going on, that it looks like I have a placenta previa and accreta, possibly something else that's more invasive. They can't really tell themselves.  

They advise me to go home, spend the rest of the day in bed.  They'll talk to my doctor too.  They also stress to Wayne and I that if I should have any bleeding, to not come back to this hospital.  They can't help me there because they don't have the manpower or the blood supply needed.  If I came back, they said, it could be catastrophic.

I call Dr. G immediately upon returning home.  I'll see him in a few days.  He calms me down and tells me to take it easy. But I can hear it in his voice that he's worried ... after 15 years with this man, I can read him pretty well.

Okay ... seriously, isn't this beautiful baby boy worth all the muss and fuss I have to go through????
Here he's measuring 1 pound, 2 ounces at 21 weeks.

Hiya again Mr. Fibroid ... You're kinda cramping my style ... 

22 Weeks, 3 Days Pregnant:  I finally see Dr. G.  His ultrasound shows the black islands on the placenta ... these vascular spaces that make my placenta look like Swiss cheese and is usually indicative of an accreta.  He turns on the color showing the blood flow through the placenta.  The placental blood vessels are traveling past my cervix so the previa is more severe than they initially thought.  Also, he sees a suspicious area near the bladder.  It looks like there's blood flow into the bladder too, indicating a possible percreta with bladder invasion. The news couldn't be any worse.  I've read the literature by this point. I know what this means and I'm terrified that not only will I lose my uterus, my cervix, but now there might be substantial damage to my bladder.  Wayne, Dr. G, and I sit in his office for a good 20 minutes or so and discuss options and strategy.  We talk about definites and possibilities.  Mortality versus morbidity.  Wayne doesn't let go of my hand.  That gives me a little bit of relief.  

My cutie pie, measuring 1 pound 7 ounces a week later.  I've been given license to eat, eat, eat so he gains weight!
22 weeks, 6 days old.

22 Weeks, 6 Days Pregnant:  I get in to see the MFM who's a world-renowned expert in obstetrical sonography, Dr. T.  The first thing that strikes me about him are his bushy eyebrows.  I focus on them and think of how I'd love to trim them for him while he and the sonographer futz around with the machine.  I'm trying to take my mind off of my REALLY full bladder I'm required to have for this procedure.  Anyone who's never seen a doppler ultrasound is really missing out ... there is nothing cooler than seeing a bisection of your internal organs.  Wayne got a huge kick out of watching my uterer shoot urine into my bladder. He jokes that he knows me inside and out.  What a guy.

The color doppler showed the placenta has indeed grown outside of my uterus and is right up against my bladder wall.  While a cross section of the bladder shows the imprint of the placental blood vessels on the exterior wall, it doesn't look like it's breached the interior yet ... operative word being "yet".  The analogy is that someone's knocking on the other side of the door but no one's come to open it yet.  Dr. T is really interested in what my six-week ultrasound shows.  He's doing research on the link between cesarean scar pregnancies and placenta accreta.  He thinks there's a direct correlation.  He's also advised other patients who've been diagnosed with c-scar pregnancies to terminate them early on because of the severe complications (like mine).  That's another post entirely.  Dr. T says he wants to talk to Dr. G immediately and look at all my records.  He asks for Dr. G's office address because he wants to walk over there later.  Wayne and I joke that for sure, we're now a part of his study.  Before we leave, Dr. T reminds me that if I start bleeding to not wait for a call back from the doctor, that I should head immediately for the hospital.  Again with the bleeding talk. Sheesh. 

So now the condition has been confirmed.  We're constantly told that the doctors can't be absolutely sure of the extent of the damage until they actually open me up, but we'll get another close look during the MRI. Now I'm just playing the waiting game until then.  At this point I haven't bled since 16 weeks and I'm holding out hope that I won't.  I'm being a good patient now ... I actually sit or lie down when I'm having contractions or a stabbing pain.  That's progress for me.  

If there are only two things I want this post to convey ... the first is that Wayne is there for me every step of the way.  He's proven over and over again how much he loves me and that he's my soul mate.  The second is that I have the most incredible team of doctors and they are REALLY on top of my care.  I feel so blessed to have these wonderful people around, looking after my Little Boy Blue and I.  I have a feeling I'm going to be spending a fortune on high-end fruit baskets as thank you presents when this is all over.  

\

Peace out. ;-)

xo, L

Is This My New Normal?

So from the very minute I woke up today I've been having this sharp pain in my lower right abdomen. Sometimes it migrates towards the middle, but it mostly stays to the side.  It's as if someone's poking me with a skewer from the inside out.  "Come here," I tell Wayne, pointing my finger, trying to show him what it feels like.  "Uh, no thanks, I think I have an idea," he says as he swerves to get out of my way.

We look online for possible reasons why I'm feeling this way. Is it the placenta? Is it growing into the bladder?  Is it the baby?  Is he pushing on a nerve?  Is there something going on with my kidney?  The questions abound.  Just call the doctor and let him know, he tells me.  No, I say.  I don't want to bother him on a Saturday afternoon.  If I call his emergency line, it's going to damn well be an emergency.  I'm not going to be the little girl who cries wolf over every ache and pain.  Wayne replies that if there's one person who should my doctor should be paranoid about, it's me.  I wonder out loud to him, "Is this my new normal?"   

After the surgery, the baby's here and I'm all sewn up, how long will my recovery be?  How long will I be in pain and will there be complications?  Will I have to get used to a life with constant aches?  Will I be one of those women who visit my friend, Mike, a urogynecologist for what he calls "lips and drips"?  

Now that there's an official diagnosis, all of those crazy, little unexplained things that have made me say from the very beginning of this pregnancy that something's off, it's not the same as the others ... well, it all makes sense now.  Let's start from the very beginning.

We got pregnant around the time of our wedding vow renewal.  We had been having problems for the past year of our marriage (hey -- after 20+ years together there are bound to be some rocky roads), but had made the decision to start over brand spanking new.  We made new vows to each other in the Shakespeare Garden at Central Park with only a handful of close friends, my parents (who weren't there for the first time), and our four boys.  We both wore linen white ... fresh and pure ... how we wanted our new life to be.  We had found each other again.  When we found out we were having another baby, we looked at it as a sure sign that everything we had gone through was going to be wiped away.  This was a new beginning in more way than one.  But then things started to get weird with the pregnancy pretty soon afterward.  I'll write about what happened in a separate post because it's pretty long ... 

23 Weeks and Pregnant with Placenta Previa Percreta

I'll admit, I've had better days.  Heck, let's go even further and say that these past few days have been really, really, REALLY ROTTEN.  I've cried at least once every single day since Monday (it's currently Friday as I write this) ... the day I found out that I could die.  Awesomeness.  Here's the thing though ... I'm not writing this blog to get sappy violin strings pulled out for me.  Anyone who knows me understands that I'm not one of those "woe is me, feel sorry for me" people. No. This blog is my way of processing and making sense of this crappy curve ball that's been thrown at my family and I, as well as bringing awareness to this horrible condition that's affecting more and more women with potentially devastating results.  Here's the thing though ... in order for me to work out for myself what's happening to me, to my body that I have absolutely no control over, I need to write whatever's on my mind, nice or ugly.  Yes, while I completely believe in positive thinking and attitude adjustment, along with "hope floats," I also subscribe to the process of accepting, no, embracing your fears as a way to move forward.  Only by realizing my problem can I work on a solution, or at least some sort of mitigation.  I'll apologize in advance for anything that makes you uncomfortable.

I was diagnosed with placenta previa percreta on Monday, November 4, 2013 through an obstetric sonogram, and confirmed 100% three days later.  Although it rolls off the tongue like an item on a tapas menu, placenta previa percreta is actually two different but related conditions. A previa is described as when the placenta is abnormally placed near or at the cervical opening of the uterus -- lying right at the edge, or partially or completely covering the cervix, blocking the any chance of a vaginal delivery.  

A previa is also a huge risk factor for placenta percreta, or accreta.  Placenta accreta is a rare and one of the most severe obstetric complications where the placenta attaches itself deeply into the muscular layer of the uterine wall, most often over scarred portions due to C-sections or D&Cs.  Immediately after childbirth in normal pregnancies, the placenta usually peels off on its own accord from the superficial uterine lining.  Because accreta cases can't easily detach, there's a huge risk of maternal and fetal hemorrhaging during delivery, an almost certain hysterectomy required, and in some cases, death.  Let me say that when doctors and medical literature say that the risk of bleeding out is big, they actually mean huge, massive amounts of blood loss.   A percreta is the most severe form of accreta, affecting 5-7% of all accreta cases where the placenta actually grows through the uterine wall to the outside and starts invading other neighboring organs like the bladder.  Lucky me!  I should be playing the lottery!  Thankfully in my case, doctors don't think the placental blood vessels, while they're right smack dab on the exterior wall of the bladder, have invaded the organ yet.  They'll continue to monitor me closely to make sure it doesn't happen. But then again, even if it happens, what are you gonna do anyway?

What kills me is that what was once a rare 1 in 2500 phenomenon has risen to an incidence of 1 in 500 due to the increasing number of C-sections, a good number of them elective.  I've had two Cs, as well as two D&Cs thanks to a couple of horrific miscarriages.  Guess that makes me scarred to the hilt and ripe for percreta, eh?  My doctor has told me that because I have both, I have a super high chance of bleeding and delivering another preemie.  He hopes I can hold out to at least 30 weeks  If, by the grace of God, I can hold out longer, he'll still take the baby by the time I'm 34 weeks because the risk of hemorrhaging is less and the situation is more controllable.  

My OB is putting together this cracker jack team of specialists to help him out with surgery ... a gynecological oncologist, a urogynecologist, an anesthesiologist, a couple of maternal fetal medicine specialists, and a neonatologist.  But that won't the entire caboodle.  The fact that I'm delivering at a major teaching hospital means that I'll most likely have 50 or so people, mostly observing in the OR. Yay again.

Some time in the next week or so I go in for an MRI to check out the extensiveness of the damage, as well as get steroid shots to help maturate the baby's lungs and brain.  I'll feel so much more relieved once I get those shots.  At some point I'll be placed on bed rest.  My doctor had originally given me a firm, "24 weeks and you're out," as in FULL bed rest where I can only get up to go to the bathroom, but now I think he's had time to relax a bit and realize that's not realistic for me.  Not with 4 kids any way.  If I don't bleed, I get to stay home on moderate bed rest.  If I start like a stuck pig, then it's off to the hospital for "in-patient management" I go.

So I've had a few days to digest this. Obviously, I'm a jumble of emotions.  First, I'm pissed ... it's the nasty Scorpio in me peeking out and raising its head ... but angry at whom?  At my husband for knocking me up again? At myself because I didn't say no?  At my body for doing yet another thing that it wasn't supposed to do?  (I shouldn't make this comparison, but here goes ... I'm beginning to realize what cancer patients go through when they're first diagnosed.)  I'm pissed at nothing and no one, yet everything and everyone.  It's no one's fault that this happened.  I needed those C-sections to deliver my younger two, otherwise they wouldn't exist now.  I needed to have those little nuggets of malformed babies taken out because they weren't coming out on their own.  So I have no one, nothing, to blame for this thing that is going to cost me my uterus, my cervix, and possibly my bladder.  But I'm still mad that it's happened.  I'm mad and sad that my Little Boy Blue is going to come early and will most likely need NICU time.  I wouldn't wish a tour of the NICU on my worst enemy.  It's like being in a foreign war zone where you don't have a gun to protect your baby or yourself and you can't speak the language.  You're so at a loss of what to do for your baby, and have 100% faith that other soldiers can make it work instead.

Another feeling I have is obviously fear but that's to be expected and I won't go into that much today because I don't want to be a complete bummer.  The most profound feeling, though, is this love that I have for my kids and my husband.  When you're told a few times that you might die, you start looking at the world in technicolor.  I want to grab hold of my babies whenever they're near me and run my fingers through their hair, breathe them in, and keep repeating how much I love them.  It's because I might lose them and I want to imprint them onto my soul.  I told my husband, Wayne, last night that we had to make sure that he was in the OR when the baby was delivered and that I was awake when it happened. I said that before they put me under to do the rest of the surgery that he had to put his face right above mine because I wanted his to be the last thing I saw.  

Okay ... enough sappiness.  I'm going to try to post every day to chronicle this whole shebang.  There aren't a lot of support groups or blogs out there about placenta accreta/percreta.  With the increase in C-sections being performed, there are going to be a lot more women like me going through the same medical process and emotions.  I want them to know that they're not alone.  It's a sisterhood of sorts ... a sick one at that ... but one nevertheless where we have to glean support from one another.  I'll try to be as real as I can without sounding too crazy ... but if I come off that way, it's probably because I had a particularly hard day.  I'm usually a pretty cheerful person and can put the rainbow spin on anything.  If you choose to follow this journey with me ... bear with me.  It's my first (and obviously my last!) time through it.  

xo,

L