It’s Like Deja Vu

Well, as suspected, the OB totally screwed up the sample that was to go for the immune testing.  That sample had NO fetal or placental remains to test.  Basically, they sent a blood clot (sorry, I don’t mean to be gross). The chromosome testing came back yesterday, and once again, it was a chromosomally normal boy. Same as last year at the exact same gestation. I have no clue where we go from here. We will make an appointment to consult with the immunologist and the reproductive endocrinologist, but I’m not sure if we really have options left. We tried the immune protocol, and had the exact same result as when we did not.  My labs don’t really give a reason for why this occurred as my natural killer cell levels and activity were low. Anyway…no clue where to go from here. Surrogacy may be our only option, but obviously that is a hugely costly endeavor with a lot of variables when it comes to total cost. If we hadn’t spent the last few years paying out of pocket for all of our other cycles, I could see having the money to spend on this. Unfortunately, there was no way to know that tens of thousands of dollars would be wasted these last few years. We still have three frozen embryos, but I’m really not sure that trying to transfer them to me wouldn’t mean certain heartbreak. Feeling defeated today.

There’s a placenta…in my purse… (GRAPHIC and possibly disturbing for some; proceed with caution)

I have really turned over and over in my mind how in the world I was going to write this post. This is my second miscarriage at home, and in the time since my first miscarriage over a year ago, I have gotten questions from many people in my circles (infertiles) about what to expect. Currently, I have two people in my support groups that are in that space between losing the heartbeat and actually expelling the remains. There are a lot of decisions that need to be made.  Do we do D&C, do we take the Cytotec to make the miscarriage happen, should we do the genetic testing, do we just let nature take its course…? There are so many different scenarios, and much of those answers depend on the person asking the questions and going through this horrible experience. I felt that writing this in an informative way could help other people deal with something that is so rarely discussed from a frank and unrestrained point of view.

For me, getting the chromosome testing done is absolutely paramount. It will dictate whether or not our attempts at having a second child have come to an end, or if we still have hope that the immune treatment will give us the baby of which we have been dreaming. If you do not want to read about the actual miscarriage process and how to pass the remains at home for testing, then STOP READING NOW.

Given that I had gone through one “successful” miscarriage with Cytotec, I decided to go that route again.  I feel like I am already at a fertility disadvantage with everything else going on, and I did not want to risk potential scarring with a D&C (I know several who have had to have scar tissue removed as a result of this procedure). Now, before people jump up my ass about the safety of having a D&C, I chose to avoid that path because it is what felt right for ME. The Cytotec carried less potential long-term risk.  If the miscarriage was “incomplete”, I definitely could’ve ended up with a D&C, but it was a second choice for me. I was set to cross that bridge if need be.

In preparation for the shitty events of the evening, I stocked the bathroom with rubber gloves, baby wipes, large pieces of  gauze, sterile specimen cup (provided by the perinatologist that gave us the crappy ultrasound findings), a roll of paper towels, and a small wire mesh strainer with a handle. The strainer is weird, but essential.  

I learned from experience that inserting the Cytotec before bed was a good idea. Thankfully, my doctor prescribed 800mg Motrin along with Hydrocodone and Acetaminophen. Within 15 minutes of inserting the tablets, I started to feel cramping a lot like menstrual cramps, and I started to bleed. I ended up taking the pain medication and trying to sleep. In preparation for the situation, I bought “extra heavy flow” pads. I will tell you that this is one of the few things that made me laugh that day. No joke; these pads were at least 15 inches long and those bitches had TWO sets of wings! It was almost from my belly button to the top of my butt crack! I have never seen a pad quite like it, though it was a good thing I accidentally overachieved with this purchase. Even with these horse pads, I bled through and onto a towel that I had placed over the bed sheets. I wasn’t sleeping well as I could still feel the cramping, but it was good enough considering.  

At 3 am, I woke up to use the restroom. If you are reading this because you are in this situation, then this next part is important.  If you’re not reading this for your own necessity, I suggest that you skip ahead or abandon ship! I lined the strainer with gauze so that it was covering the bottom. I urinated into the strainer over the toilet. When you pee, your pelvic floor muscles relax and contents will be expelled from your vagina (sorry…gross but true). This is exactly what happened and a very large clot and some tissue was caught in the gauze while the urine was able to pass through. I placed the strainer on several pieces of paper towel so that I could clean myself up with the baby wipes and get away from the toilet. I used the rubber gloves to take the contents of the strainer and place them in the specimen cup. Two of the Cytotec tablets were also in the strainer. Because I was not sure if everything had passed, I reinserted the two tablets.  I thought it was possible that I had expelled everything and went back to bed.  I continued to feel a great deal of pain and cramping, so I took the pain medication again and went back to sleep. At 7am, I needed to use the restroom again. Even though I thought that I had possibly gotten everything out before, I used the strainer and gauze again just in case.  It was a very good thing that I did this because there was a repeat performance, and another large piece of tissue and clot passed. I added this to the specimen cup and placed it back in the refrigerator. I continued to cramp and bleed throughout the rest of the day (and several days after), and also used the strainer and gauze the next couple of times using the restroom just in case. 

“Products of Conception”

This is what they like to call the remains of a baby after a miscarriage. It sounds so neat and tidy and unbelievably impersonal. I had to drop off the “specimen” at the OB, and I also needed to have them do an ultrasound to be sure that the tissue had passed and that the miscarriage had been “complete”. I clutched my paper bag containing what was left of my pregnancy as I walked through a room full of pregnant women (no exaggeration; they were ALL visibly pregnant). I got to the front desk and mentioned my name and that I had a “sample” that I needed to give them for testing. I had called earlier to make the ultrasound appt. and let them know that I was going to bring in the remains for chromosome testing. Nevertheless, the woman at the desk asked quite loudly what kind of sample it was. I looked behind me, and every woman was looking at me and waiting for a response. Again, this was NOT my imagination. I tried to whisper that I had miscarried, but in a room this small, there was no privacy and also no way to avoid hearing what I had said. I had never hoped for loud elevator music before this moment. The receptionist said okay and asked me to sit and wait. I sat there with my little bag on my lap while every woman in that room avoided looking at me.  

I was eventually called back to an exam room. Unfortunately, my usual OB/Gyn was at the beginning of his two week vacation, so I got some insensitive pain in the ass as a crappy substitute. Something that was also very important was to get a piece of the placenta to take to my immunologist for immune testing. This would be essential in determining if my body had rejected the pregnancy or if maybe something else was the cause of the miscarriage. The person that I talked to at the immunologist’s office made this seem really routine and normal for an OB office to do this. When I got to see the doctor, I explained in detail the situation and the importance of getting placenta as it would help to determine the future of my family. After I explained my situation twice, the bitch of an OB asked, “Why didn’t you just do chromosome testing before IVF?” Seriously? Why don’t I “JUST” do chromosome testing before IVF???  Hmmm…maybe because I have no history of genetic issues in my fertility struggle, you have to have 5-day embryos to do this (mine are only 3.5 day embryos), it costs THOUSANDS of dollars, it is never covered by insurance, and it is NOT considered “standard” by any means! She also tried to tell me that they wouldn’t be able to distinguish placenta at this gestation (9 weeks).  I can tell you that this is crapola because my amateur eye could see with both miscarriages exactly what was placenta. It doesn’t take a rocket scientist. At this point, the baby is a couple of centimeters, and the report for my last miscarriage at the exact same gestation said that my placenta flattened out to 6 inches (sorry to be graphic but we’ve come this far, so why not?). I continued to impress upon them how important it is for them to TRY to get a piece of placenta in formalin so that I can take it for more advanced testing with the immunologist.  She and the rude nurse then took the sample to get it ready. When they returned, she handed me a small container and says, “Well, we just decided to cut the whole sample in half and hope that each half has what they need to do the testing.” Maybe I am overly sensitive at this point, but how insensitive can a “medical professional” be? I was totally in shock and just focusing on making it through the day, but in hindsight, it makes me very angry (though a lot of things do at the moment).

This leads me to the placenta…in my purse. I was given my little container to bring to the immunologist. No discreet paper bag. This time, it is a clear container in a clear plastic bag. I didn’t even want to look at the women still remaining in the waiting room. I cannot even imagine what they were thinking at that point. I quickly tucked the bag into my purse before anyone else had to see it. By the time I left the OB’s, the immunologist’s office was closed. Because it is in formalin, it does not require refrigeration. I also did not want my husband to have to see this in the refrigerator or stumble upon it by accident.  So, I kept it in my purse.  I went to work, I ran a few errands, I dropped my son off at a camp, and I went about my day with my placenta in my purse. At some point, I was mystified that this was my “normal” at that moment. My life has become so skewed by this entire experience. I sat in my car and laugh/cried at the ridiculousness and horror of it. What else do you do when you’re going about your life with your placenta in your purse?

If I stop to think about all of this, I feel sad or angry. I don’t understand how it can be so easy for some people, and so unbelievably hopeless for others. I’m trying to come to grips with the fact that it is very possible that this is the end of the road for us. If my body rejected the baby even with all of this immune intervention, then what else is there to do. I don’t know if I can keep going through this experience. Surrogacy would be our only option, and without knowing someone with an available uterus, the cost is just too much. With this failed pregnancy, the costs are in the thousands just from the labs and testing to be sure that everything is going smoothly. To test the placenta and chromosomes it will be even more. We are running out of options quickly. We will continue to wait and worry and wonder what is next for us until the chromosome and placenta testing are complete. Hopefully, my dope on a rope OB stand-in didn’t fuck it up so much that we won’t get answers.

Fingers crossed. 

I hope that this post helps at least one person going through this crappy circus. I also hope that it didn’t jumpstart a vomit for anyone else who managed to make their way through the whole thing. This shit isn’t for the faint of heart. 

I hope to get my ass back on the paleo wagon soon. I know that it makes me feel better, but right now I’m having a hard time wanting what is best for me.  Beating the crap out of my body seems to make my mind feel less heavy. Makes no sense, but then again, nothing does right now anyway!

Cheese Souffle. A MUST when life gets you down.

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No, this is not paleo. Actually, you cannot get much farther from paleo than this. I went to the beach to nurse my wounds and try to get my head together. Last week, I found myself getting angrier and angrier at everything. I fought the urge to either yell or cry at random people (my poor husband!), and I felt like something awful was eating away at me from the inside. I officially miscarried at home last week (will blog about that separately), and this time the closure did not come for me as it did last time. I’m a work in progress I guess.

My life feels in limbo while I wait and hope that the testing on the baby and placenta yields some answers. Without knowing why we failed, yet again, there is really no way to have closure or move forward.

This cheese souffle is a recipe that I grew up enjoying during all family holidays (and even just any old Sunday). It is a total comfort food for me, and one of the few things I cared to take the time to make in the last week and a half.

It turned out to be a wonderfully relaxing weekend, and I truly got to enjoy time with my boys. Time spent rock/treasure hunting was relaxing and kept my mind in a much less harmful place. It was SO hard to leave today, but all good things must come to an end.

This needs to be prepared the night before!

8 one-inch slices of sourdough bread (or 16 slices of 1/2 inch)

1.5 lbs shredded cheddar cheese or other favorite (monterey jack mixed with cheddar is good too)

6 eggs

dry mustard (at least 1 tsp depending on your taste, use more if you like the flavor)

3 cups milk

3/4 tsp salt

butter

cayenne pepper

Spread bread with butter only on one side.  Cut bread into one inch cubes.  In a buttered baking dish (13×9), alternate layers of bread and cheese.  In another bowl, mix the slightly beaten eggs with milk, mustard, salt, and dash of cayenne pepper (or more if you want a kick).  Pour the egg mixture over cheese and bread.  Cover with plastic wrap.  Let stand in refrigerator overnight.  In the morning, bake uncovered in 350 degree oven for 45-50 minutes, it will be puffy and golden brown.  If you use a pyrex dish, be sure to reduce the temp to 325 degrees.

Same story, different day. (You may want to skip this post if you have a problem with anger and profanity)

Where to begin…my single frozen embryo transfer went great, and I had a positive pregnancy test only six days later with beta hcg levels (pregnancy hormone) rising steadily and rivaling one having quadruplets. We had a great heartbeat at 6 weeks, went on a road trip with friends, and had a 9week ultrasound yesterday showing no heartbeat and growth stopping somewhere in the days prior. It is déjà vu all over again. The lovenox, synthroid, and three rounds of IVIG infusions yielded the exact same outcome as last year when I was taking none of the medications and was forty lbs heavier. Nothing that I have done has mattered. I am deeper into advanced maternal age (36), spent more money on a fruitless endeavor, and now I wait to miscarry and hope that there is a genetic abnormality that caused all of it. Sounds crazy to hope for a genetic issue with my baby doesn’t it? At least if that is the case, then my body did not attack the embryo and everything I have done over the last year wasn’t all for nothing. If my body is responsible for the demise of the embryo, yet again, then I think that we are out of options. I don’t think that I can take my three remaining embryos and put them into a body that is destined to destroy.

Clearly, I’m not in a great place, but I’m trying to keep it together. At least this time, my eight year old was unaware of the pregnancy. At least it is one less heart broken. I am currently plunging myself into anti paleo foods, and of course it makes me feel like shit though that seems apropos. My mind and body are now on the same page.

My hope is to miscarry at home (with the help of some prescribed medication and narcotics) and we will have the remains tested again. Now I wait. At some point, I have to put the big girl panties on, but right now I am just mad. I want to burn the fucking big girl panties. They are a symbol of devastation to me. Whenever I have to put them on, it means that a dream has died, and those fucking big girl panties are what is left in the aftermath. I wish I was like my husband. I swear he has those panties tattooed to his ass because he never has to put them “back on”. They are always on. He is way tougher than I, though I suspect that he holds it together not only for his own survival but for my own as well. I am convinced that he is not dead inside (I tease…he has a heart bigger than most). One thing that I have felt from both miscarriages is all of the love from so many people. We have so many cheerleaders around us that put their hearts into our journey. One thing that I definitely do not feel is alone. Thank you, thank you, thank you to all of our cheerleaders. We really have felt all of the prayers and well-wishes. It really does make it suck just a little less.

Some may think that it is too soon to be writing about this. I really don’t give a crap what someone else would think at this point, but I will explain my motivation anyway. This blog is part for my emotional growth, and part for helping others. Writing this helps me to work through what I am feeling (not to mention it saves me from having to tell people face to face, which is usually accompanied by the dreaded ugly cry). The blog is also for others out there who are going through infertility and loss. I am a member of enough infertility support groups (IUI, IVF, PCOS, reproductive immunology…) to know that there are so many people out there going through this who truly do feel alone. I’m not the first to miscarry and am far from the last, but not everyone is lucky enough to have the support that I have. Sometimes you need to hear from someone else that it SUCKS. I’m not going to blow sunshine up anyone’s ass and tell them that it will all be fine and the next pregnancy will go the distance. Sometimes it doesn’t, it’s a bitch, and it fucking hurts!

I will probably update after the miscarriage. Some people really do want to know about that experience. I have several friends who have found themselves in my position of carrying a baby without a heartbeat and not knowing what is to come next. Most people do not discuss what a miscarriage at this gestation at home truly involves. 9 weeks is the “cutoff” for miscarrying at home (according to my doctor) as opposed to a D&C, and though it is no walk in the park, I don’t want others to have to face it with fear of the unknown. I’m nothing if not blunt, so there are many who may want to skip that next post.

Until then…

Some of my latest nibbles…

Sashimi with avocado and green onion. Refreshing and yummy!
Sashimi with avocado and green onion. Refreshing and yummy!
Paleo Blueberry Coconut Pancakes
Paleo Blueberry Coconut Pancakes

Now that I can again download pictures, I will have to get more on the ball with posts again. This week, we depart on our much anticipated road trip to Yellowstone, Colorado, and Zion. It is going to be the ultimate paleo test, as I cannot rely on convenience food or processed food. I plan on making and freezing meals to put in the RV freezer (obviously, we’re not exactly roughing it). I will make a post on that before I depart. It should be interesting to see if I can make it the whole trip being 100% paleo!

Great option for snack, lunch, or a light dinner.

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This was what I had for dinner. It was easy, and it satisfied me. I really did not want to cook or have to do any serious prep work tonight and this was really perfect. I’m not sure how strict paleo the roast beef is, but I had it cut fresh at the deli, and on the deli sticker that they adhere at the time of purchase did not have any “bad” ingredients. I think I will make these again when I’m feeling lazy. You could incorporate more toppings (red onion, pickle, sprouts…).

Method: Lay out a large, thin piece of roast beef. If desired, put a thin layer of paleo mayo on top of the beef. Add thin slices of tomato and avocado. DONE!  Easy and yummy!

Crack Nuts…Vanilla Cinnamon Cashews!

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When I was making these, I had to stop myself from snacking on them while they were cooling.  Until they have cooled, they have a really weird texture.  These were also crazy easy!!! Make sure that you use parchment for easy cleanup.

Ingredients:

  • 2 egg whites
  • 2 tsp pure vanilla extract
  • 1/2 tsp salt
  • 2/3 cups coconut palm sugar (1/3 white sugar, 1/3 brown sugar for the non paleo folk)
  • 1 tsp ground cinnamon
  • 4 cups raw organic cashews

Method:

Preheat the oven to 300 degrees. Line a large baking sheet with parchment paper. In a bowl, beat the eggs and vanilla until frothy. Add remaining ingredients, and stir gently to coat. Put the nuts on the baking sheet, and spread into a single layer. Bake for 30 minutes. Allow to cool completely before storing.