29 Weeks

Dash and I have officially made it to 29 weeks. This is sort of the magic window where our baby could arrive and her chances of having no long term problems from a premature delivery are in our favor.
I feel like saying, "Phew!" but I can't quite do that yet.
Yesterday afternoon, starting around 3:30, it felt like all heck broke loose in my body. I started having some pretty crazy contractions that were coming every 5-10 minutes, even when I sat down, and they were the kind that stop you in your tracks because you can't move. Sitting for long wasn't much of an option to try and get them to calm down, since I still had 3 daycare children in my home and those infants don't exactly feed themselves (yet!)
By the time work finished, my oldest daughter had a piano lesson scheduled, and I knew I could send my husband for fast food for him and both of our daughters, but that seemed horribly unfair to me because it meant I'd be the one left opening a box of organic black bean soup while they got burgers and fries.
I love fries. No ketchup--just plenty of salt and that crispy, soft combination that makes my mouth water.
I can't have fries right now, so the thought of letting them eat what I couldn't have while I was already feeling miserable just didn't appeal to me in the slightest.
So I grabbed my water bottle and got to work on the dinner I'd been looking forward to, knowing that I might just have to bail on it part way through anyway.
With the exception of the crust, I made a completely-from-scratch chicken pot pie for dinner last night. It was heavenly!! And I managed to get it all done without feeling like I'd seriously overdone myself, although it was close.
My husband was beyond shocked later that evening to find out that I hadn't used any canned soups to make the sauce, which also meant that the meal was much healthier than he'd thought and he could feel less guilty about stuffing himself so badly. Chicken, chicken stock, lots and lots of veggies, no potatoes since I'm not allowed, some seasonings, and flour as the thickening agent . . . simple and divine.
The girls and I did pigged out, too. I made a huge pie and the entire thing was gone before we got up from the table.
I hadn't expected that, but it also means I know exactly what to do with some of the leftover turkey meat after Thanksgiving in a couple of days. I have another set of pie crusts and will be using them to make a turkey pot pie to stick in the freezer for a meal sometime in the coming weeks.
The best part about the chicken or turkey pot pies is that as long as I skip the crust, which is easy enough for me to do, they're pretty close to dairy free and contain no whole grains, the two items my other daughters had problems with when nursing. So if the pot pie stays in the freezer for a couple of months, I still have an easy meal that I won't need to worry about breastmilk sensitivities with.

When it comes to sensitivities, my lovenox injections sure are giving me a run for my money these days. I'm not exactly sure why, but I'm getting hard lumps under almost all of them now and many are bruising pretty badly again. I suspect the lumps may be related to the colder temperature in the house, and thus the cooler temp of my fingers and skin, but I can't be sure.
You can't see the lumps in the photos, but you can see the bruising. These were taken tonight. They aren't the clearest photos in the world because my nice point-n-shoot camera had an unfortunate accident while we were in Tennessee and my 4 year old dropped it at the Hard Rock Cafe. . .

For clarification, none of the spots are moles. Instead, they're the pinpricks sometimes leftover from the injection. The rules for my shots include the following:

1. No injecting into a bruise
2. No injecting into a lump
3. Must be in the belly or love handles
4. Cannot be within 2 inches of the belly button
5. Must be able to "pinch and inch" for the injection site but no more, no less
6. Use all 4 quadrants of the belly area

It doesn't take a rocket scientist to realize that with all the extra bruising and lumping, I'm rapidly running out of locations to inject!
In the top picture, you may be able to see a darker bruise close to the waist on my pants. I used that spot in sheer desperation, knowing that the lower areas bruise, lump and hurt much worse than the ones above my belly button. The injection doesn't hurt going in, but the bruise is tender for several days. That particular shot was done Saturday night, so it's already 3 days old and looks as fresh as if it had been done this morning.
I will add that Dr. H had me get a cream that helps with bruising called Arnicare, and it really does speed up the healing when I remember to use it! The Arnicare also smells really nice. It's classified as unscented so the smell is likely from the Arnica montana, which is the active ingredient. The cream is also paraben free, which makes me happy!
My husband and I are also making some progress on a name for Dash. We certainly haven't settled on one, but we have some parameters that we agree on and it's helping.
If I have another few nights like last night, we'll need that name ready much sooner than Christmas, which is only 31 days away!
In the meantime, I need to remember to drink, drink, drink my water and not let time go by while I'm busy at work.

Travel Essentials

The last few days have had me pondering, in the mildest sense of the word, how to handle my injections during our upcoming road trip.

For a normal pregnant woman, the main concerns tend to be food, water, and restrooms.

I still have all those concerns, but add to that the mandatory walk-break every hour as well as how to manage injections in a timely fashion and I was left wondering . . .

But I think I have it figured out. The kicker is that those around me are just going to have to understand that when my injection alarm goes off, it means I have to stop whatever I'm doing, find a seat if possible, and do my shot.

My great-grandfather, John Albert Smuin (Grandpapa!) used to give his insulin injections right through his pants. As a child, I thought that was great fun!!  As an adult, I realize that he did it for convenience--his went in his thigh--and because it tended to shock people, which I swear he enjoyed. I might have inherited just a teeny bit of that from him!

My injections can't be done through my clothes.  Well, they could, but I'd risk infection and that's not a risk I can take.  Grandpapa was already getting on in years and facing multiple health problems, so I'm pretty sure that infections were pretty low on his list of concerns.

Bathrooms don't usually have chairs in them and I'm supposed to do my injections laying down, although I have been doing them reclining since Dash's heart-stopping moment a couple of months ago so those around me will just need to look away if they are at all squeemish about watching a woman pinch her love handles or tummy, rub it down with an alcohol wipe, then inject.

And while I hope that nobody in our travel party or in areas surrounding us is offended, my biggest concern is for my baby, so I will do what needs to be done, wherever I am. I just hope that if I'm in the van that the roads are smooth because going over a bump with a needle in your side wouldn't be fun!!

Now, how to pack my supplies?  After some thought, I decided to use my hiking wetbag. This is a small, zippered bag that I sewed a couple of years ago. The bag is leak proof, washable, and already had two helpful items in it: toilet paper and my pStyle. I simply added a couple of my injections, all of my alcohol wipes, and a supply of bandages for the inevitable small bleed.

Viola! My wetbag is now more of a hazardous waste bag, since it will contain my shots as I finish them as well as the pStyle, although I hope I don't need to use that! I will replenish my injections each morning and I always keep a spare loosey-goosey in my purse.

The last thing I needed to figure out was my seemingly endless supply of oral medications and supplements. I found one of my pill organizers and since I ran out of my omega fatty acid supplement a few days ago, everything else barely fit.  Two of my supplements are liquids with droppers, so I'll just have to take those as-is. The bottles are small, so they won't take up much room.  I just need to be careful since they're both glass and I don't trust the droppers to be leak-proof if the bottles get tipped.

I grew up in a family of light packers, so it drives me just a bit batty to have a bag, however little, of supplies like this. Even my make-up bag is smaller. Do you want to know what it contains? Mascara, two small eye shadows, and a brush for application. That's it!

My toiletries bag? Oh, I don't have one of those. My hair only gets washed once every 7-8 days so I don't need any cleansers. This leaves my toothbrush, hairbrush, probiotic deodorant, and toothpaste to rest nicely but loosey-goosey in my luggage.

So yes, I'm a light packer in general so this whole "bring an entire box of injections" thing is annoying because it takes up So Much Room. =)

Anti-Xa Results: Test 3

Got the call this morning from Dr. Hamersley's office.

For those that need reminding, the target zone is 0.5-1.0 for 3 hours post injection.

On my second test, after my dose had gone from 60mg to a 40/60mg split morning and evening, my value was 0.10, nowhere near the desired range, so my blood was still clotting more than we want.

My dose was upped to a 60/60mg, morning and evening. I was a little worried because it didn't seem like very much of an increase, considering how big the increase had been the week before. But I guess that's all that was needed because my Anti-Xa came back at a perfect 0.86 this time!!

I can sleep much easier tonight!

My next growth scan is a week from today and I hope that the couple of weeks where my numbers were so off haven't affected Dash's growth. We are now past the halfway point to viability but I would really love to get to 32 weeks or beyond and I think, if we can convince my hyperactive immune system to calm the heck down, that we might actually have a chance at that.

My anti-Xa levels will be tested again in 3-4 weeks. Not so much because the doctor said so, but  because I will insist on it.

When the Doctor Calls

When it comes to health and standard doctors' offices, I never get a phone call unless the news is "not so hot".

So when Dr. Hamersley's name showed up on my caller ID, even though I was in someone else's home dropping off one daughter and picking up the other at dance camp, I answered!

It turns out that my anti-Xa levels were way too low, even with the new dosing.

The nurse and I went through exactly what I had done with my shots last week.

Wednesday: 60mg/60mg
Thursday: 40mg/60mg
Friday:  40mg/60mg
Saturday: 40mg then 3 hours and 10 minutes later, my blood was drawn for the anti-Xa test.

The range Dr. H shoots for as far as low molecular weight heparins at 3hrs is 0.5-1.0.  My result from Saturday was 0.1.

Nowhere near the desired range.

So effective immediately, I am on a 60mg/60mg dose until further testing dictates otherwise. I now have over 2 boxes of the 40mg shots laying around, but will keep them on hand in the event that they're needed further down the line or during my postpartum phase.

My next growth ultrasound is two weeks from today and if Dr. H hasn't sent a new anti-Xa requisition by then, I'll request one and get my levels tested once again.  It is clear to me that my body really really doesn't like being pregnant!

I will forever be thankful for the woman in a facebook group who recommended that I see Dr. H. Without Roberta's recommendation, I would never have discovered Dr. H and would have been guaranteed another pregnancy heartbreak.

The outcome on this one is still unknown, but at least I have a doctor who is being diligent with my testing and understands my concerns from a first-person point of view.

NT Scan and The Longest Appointment Ever!

First of all, I have to say once again that I adore Dr. Hamersley. Seriously.  You want a doctor DETERMINED to do whatever it takes to help a woman have a healthy baby? She is the one to see!

My appointment was scheduled for 8am and I was very uncertain of traffic.  Turns out things were a little thick, but moved at the speed limit or above the entire way so we had plenty of time to kill.

I will take being early over late ANY day when it comes to appointments.

We weren't called back to talk to the geneticist until about 8:15 and our discussion with her lasted almost half an hour.  She drew out a full family tree with circles and squares for the various genders of our siblings and their children then went through a list of who had pregnancy issues, developmental/cognitive problems, and any known chromosomal issues.

I must say it was really nice to identify the gender of two of my pregnancy losses and she didn't look at me like I had three heads for knowing the gender of my children. They matter, and she understands that (probably from a chromosomal standpoint, but I'll take it!)

There is only one baby in the family that has had known chromosomal issues that we are aware of and that is my husband's only cousin, who passed away at the age of 11 months. We couldn't remember if there was a name to the genetic anomaly Jeremy experienced, but we shared what we did know.

My husband and I agreed to have ALL of the genetic testing run that could be done through bloodwork, including a test is not covered by insurance.  Not only will this give us a good look at the chromosomes of our baby, but will also tell us with >90% accuracy the gender of our baby.

So we will know for certain in roughly two weeks whether Dash is the girl I think she is or a big surprise boy.

One of the tests also required a rather interesting combination of blood pressures. I can't remember which test it was.  I had cuffs put on both arms and pressure was taken simultaneously on both arms.  After, 4 vials of blood were drawn, and then both arms were checked again.

The values were very close to one another on the first set: right around 102/65. After my blood was drawn, my left arm was about 98/62 and my right arm (where the blood was drawn) was 96/56.  My diastolic dropped more than the other arm, but I don't know if that is related to the fact that I'd just had blood drawn from that arm or not.  The nurse was pleased to see that the values between the two arms were very close.

The ultrasound went well, too! I am 12 weeks + 0 days based on the ultrasound they ran almost 4 weeks ago and that actually matches up with my LMP, too. Dash is measuring 12w+3d, so almost a half a week ahead!  This is really fabulous news!

Crown to Rump is 5.86cm. And that is a hand with fingers by the face!

Both my girls measured ahead starting around this point, with the measurements getting progressively larger with my first and staggering off with my second (I suspect there may have been some minor placenta issues with my second).

There were two main objectives for this ultrasound. The first was the check blood flow and the second was to measure nuchal translucency. This is a measurement of the space behind the neck as a first hand way of seeing if the baby is at risk for Down Syndrome and should be 1mm-2mm wide. Although Dash didn't want to cooperate, the tech was able to get three measurements and they all measured 1.7mm, so right within range. This picture, which she just took for us to have, was actually the one that showed the NT space the best.

The only thing "abnormal" that popped up in the ultrasound was that I have resistance in my left uterine artery. During the scan I could see that the pattern of blood flow on the screen was different on one side, but didn't know that had any significance until Dr. H brought it up.

The significance of the resistance can be found here in the last paragraph. Dr. Hamersley confirmed that I'm on baby aspirin and wants me to be diligent about taking it an hour before bedtime.  I have been taking about 2 hours prior to falling asleep, so I will adjust that.

Our discussion then turned to lovenox. I mentioned that at my preconception appointment in May she had said that when I hit 12 weeks, we'd likely move to twice daily injections.  She double checked my current dose and as the wheels in her head turned, first suggested doing 40mg twice a day, which would still be an increase over my current dose.  But then you could see her rethink that and she said, "Tell you what: We're going to have you do a split dose. I want you to take 40mg in the morning and 60mg in the evening."

This is a sort of compromise that I had been mulling over in my head a few days ago, when I learned that my anti-Xa levels had been so amazing earlier this month.  I wondered if doing 60mg twice daily would be too much.

With the arterial resistance and having lost my son on the 40mg dose, I feel very comfortable moving to the 40/60 split. I will have my anti-Xa levels checked again on either Saturday or Monday, depending on when I can get in to LabCorp to get the test done. Dr. H wants me on the new dose for 3 days prior to having the test run, so Saturday would be my earliest.

My next appointment is three weeks from today for a growth scan and to review, if needed, the results of the genetic screening.  My results will likely be in the mail before then, but if I have questions, I can ask at that appointment.

By the time we walked out, it was 10:15.  Long appointment!

As a side note, when I mentioned that I could feel the baby moving the tech asked if I knew why.  My response was, "Because this is my 8th pregnancy." She said, "You're smarter than most. It's also because you have a posterior placenta so there isn't anything to muffle the babies movements."

I suspected posterior before, but now I know for sure. Hallelujah!!

Anti-Xa Testing in Pregnancy

As I get closer and closer to the point in my pregnancy where things started to go wrong with Jackson, I have been continuing my research on the use of Lovenox in pregnancy. 

This is not really an emotional post, but more along the lines of "informative" for those who read my stuff by have no idea what medicine I'm on or why.

For those who aren't familiar with Lovenox, it is a low molecular weight heparin that is injected into your fat--in my case the belly.  It is considered an anticoagulant (reduces the ability of blood to clot), but with a unique factor: it doesn't pass the placenta so it considered very safe for a developing baby since the medicine doesn't reach the baby.

The biggest problem I have run across as I've tried to research is that so many of these studies are incredibly small! When you have a study that only includes 30 people, it wouldn't seem that you can make very many conclusions, especially when there are thousands of women in the US who are on this medication at any given time.

As an example, just a couple of days ago a medical study on the use of a specific LMWH known as dalteparin (similar to Lovenox, and I have a friend who is on this because she is allergic to Lovenox) was printed in the Lancet. The study concludes that "dalteparin does not reduce the occurrence of venous thromboembolism (blood clots), pregnancy loss, or placenta-mediated pregnancy complications in pregnant women with thrombophilia at high risk of these complications and is associated with an increased risk of minor bleeding."

The problem? The study took over 12 years to perform but only had 292 participants.  Wait, What?!?  How in the world do you conclude ANYTHING with a study that took over a decade and still had fewer than 300 participants and each participant would have been in the study for less than a year?!? In addition, when you consider how many women take LMWHs through pregnancy and the postpartum period, why weren’t more women included in the study?

The is pure speculation, but since the study was open-label and randomized, the women who agreed to participate were assigned to either a group that would receive the medication or one that wouldn't. Each of these women would have known prior to the study that they were at risk for developing blood clots during pregnancy or having a placenta problem because that was a requirement of the study.  I can't imagine any woman who has experienced pregnancy loss would agree to this kind of study, so in that sense I guess 292 subjects is large . . . and of those in the study, 2 patients were moved from the control group to the medicated group. I would speculate that something happened during the pregnancy, such as a blood clot, to require them to be on the medication but the study doesn't say.

I would love to take a look at the records of three of the MFM practices I'm familiar with locally to compare the pregnancy outcomes of patients on various doses of Lovenox and their anti-Xa test results, if those were tested.  I am quite certain that a simple computer program that could scour the medical records for key words would make this very easy.  Just search for Lovenox, anti-Xa, the result, and then how the pregnancy ended (pre-term, IUGR, stillbirth, live birth, etc).

What this boils down to is that I believe it is important for any pregnant woman to have their anti-Xa levels tested during pregnancy, and I'm not the only one who thinks that.

Consider this study: Anti-factor Xa plasma levels in pregnant women receiving low molecular weight heparin thromboprophylaxis

The conclusion has what sounds like a dire warning: 

Serial anti-factor Xa assessment for dose adjustment should be considered for all pregnant women receiving low molecular weight heparin. (emphasis mine)

Never one to research just one side of an argument, here is another article: Is the monitoring of anti-Xa activity necessary in pregnant women undergoing thromboprophylaxis?

Consider for a moment that even this abstract says that the patient needs to have their anti-Xa levels in a specific range before frequent monitoring "may not be required".  I translate that to mean that the test needs to be run until the anti-Xa levels are within a specific range and then consider backing off on the monitoring.

Last Thursday I met with my OB.  I asked her a question about the Vitamin K shot that newborn receive, usually right after birth, and how those that have inherited clotting diseases may be affected, since Vitamin K is a key element in clotting. She didn’t know the answer, so I will ask my MFM tomorrow when I see her.

My first ever anti-Xa test results had also been faxed over to my OB, so she had those.  The listed range was 0.3-0.7 and my result was 0.83.  I was out of the range, but my score was circled with a great big “GOOD!!” by it.

At first I was really nervous, because I’m OUT OF RANGE!  But I’ve done further research and found this: Nobody tells you what the range means!

Yeah, so I went to my Lovenox support group on facebook and asked them.  Based on what their doctors told them, a value of 0 means that there is no Lovenox in your system at all and your blood will clot just as it should.

Not good for someone who is trying to prevent that.

The acceptable range seems to vary based on what website Google pulls up but there is something consistent: someone on a prophylactic dose (generally 40mg/once a day) has an acceptable range closer to 0 than someone who is on a therapeutic dose (used to treat active clots or in women where the prophylactic dose is insufficient based on history). 

The range for therapeutic seems to be roughly 0.5-1.0, with a variation of ±0.2, depending on the source.  In other words, the larger the number, the less your blood is clotting.

So for me to be on the outside range is actually a very good thing.  I am not so far beyond the range that I need to worry about excessive bleeding, but nor am I on the end of the spectrum where I would worry that my dose was insufficient.

Or at least, that was the case a little over 3 weeks ago when I had the test run.

I hope that when I see Dr. H tomorrow (MFM), that she will write another lab request so that I can get tested again.  At my preconception appointment she had indicated that somewhere around 11-12 weeks, I would move to doing the shots twice a day.

I am 12 weeks today, so it is likely time to make the change.  It was at 17 weeks that I had my last “All is going great” ultrasound with Jackson, so I’m getting a little antsy!!

Meeting with a New Doctor

This afternoon I met with Dr. Hamersley and

I

Feel

Validated!!!

It isn't often that a doctor cries in front of their patient, but that is just one of the many wonderful things I experienced at this pre-conception appointment.

I'm too excited to write down everything tonight, so I'll stick to the basics.

Sheri Hamersley treats that 2.5% on either end of the normal curve.  That 3rd standard deviation. Women like Me, that don't fit the mold of standard medical care. And she does it because she is one of us; she lost multiple babies, too.

The most validating part of the conversation was our discussion regarding Jackson's autopsy and the treatment we'll be pursuing.  The portion of the report that I'd researched led me to believe that he had passed away due to a clotted placenta.  Dr. Hamersley confirmed that I was correct.  When I asked if it meant that my lovenox dosing was to blame, she stopped short of condemning the doctors I had seen with, "Hindsight is always 20/20 but we will be monitoring you much more closely.  Your anti-Xa levels will be checked regularly and we'll have you on a different dose."

How different a dose?  I had not known that lovenox is prescribed on a weight based scale in addition to anti-Xa levels.  Based on my current weight of 153 lbs, the dose I've been prescribed is 60 mg each morning.  This will begin immediately and will be taken during my luteal phase along with the prometrium I already take. If I get a negative hpt on 14dpo, then I stop both and wait until ovulation again.

Lovenox, in addition to thinning the blood, has anti-inflammatory properties.  I had already figured out that APS is immune based and anyone with an autoimmune problem knows that inflammation is a bad thing. So by taking lovenox during my luteal phase, it will reduce inflammation at the time it is most critical to do so: when a fertilized embryo would try to implant and begin to grow. I will not take it during my follicular phase.

During my pregnancy with Jackson, my dose was 40 mg once daily.  My new dose, if/when I get pregnant, will be 60 mg twice daily with regular monitoring to adjust the dose as needed. Why twice a day when I was only on once a day before?  Because lovenox has a short half-life.  She says the medicine is already half broken down by the body within 4 hours of injection.  A once daily dose during my luteal phase will reduce inflammation, but the twice daily dose will prevent clots.

Does that make sense?

She also wrote out an Rx for a prenatal vitamin that has her preferred amount of 5-methyltetrahydrofolic acid (a naturally occurring form of bioavailable folic acid) as well as a comfortable amount of DHA.  In 11 years of ttc, this is the first time anyone has ever written a prescription for a prenatal for me.

I also have some blood work to get done that I'll research soon. I believe it's another antibody test that Shady Grove did not run.

The last Rx is for Metanx, a medical food generally used to treat problems with diabetic neuropathy (numbness in extremities due to nerve damage).  One of the ways it functions, according to Dr. Hamersley, is to "open" the circulatory system. It increases blood flow throughout the body and increases nerve density.

I am super excited to move forward.  I'll also be removing my biggest stress in a month to help reduce my cortisol levels. The swimming pools have opened and I need to swim, alone, three times a week.  I love to swim and this will give me the three hours of exercise a week that I need as well as a time to just breathe.  Count my strokes and breathe.

If you're a swimmer, you might just understand what I mean.  I can imagine that runners feel the same thing about the sensation of their feet hitting the ground.  I'd probably like running if my knees could handle it.

So I swim.

I will also be going on an anti-inflammatory diet.  No more potatoes or white rice, limited whole grain noodles and bread, lots of vegetables. She recommended kale to increase my vitamin K levels, which should help with the bruising from the lovenox.

Oh!! And SHE USES ESSENTIAL OILS!!!!

Yeah, I think she's going to be a fantastic fit for me, both personally and medically.

Can I get a HOO-RAH?!?!?? (said in your best R. Lee Ermey voice)