Week 10 of Pregnancy: 6th Miscarriage

Week 10 of Pregnancy: 6th Miscarriage

Even without the ultrasound tech saying a word I knew something was wrong. There was no pulsating heartbeat like I saw with the last ultrasound. It was just complete stillness. My doctor and nurse seemed to be feeling the weight of sadness for me, they said they were sorry to see me going through this. I cried a little bit in the bathroom after the ultrasound, but then focused on what needed to be done afterward. I held it together while I was still in the office so I could think clearly enough to ask the questions I needed to. 

 

The ultrasound tech said the baby stopped growing around the 9th week based on their measurements. On the bright side, this is the longest pregnancy I’ve ever had. So maybe it being nine weeks could be attributed to some of the changes I’ve been making with how I eat and the supplements I’ve been taking. Unfortunately I didn’t find out I was positive for a MTHFR gene mutation until a couple weeks ago. Maybe had I known I could have started the Baby Aspirin sooner and maybe it would have protected this baby. 

 

My doctor highly recommends I do the Anora genetic testing on the baby to see whether it had a chromosomal issue. If it had a chromosomal issue, there’s nothing that could have prevented it. But, if it is chromosomally normal this may help determine whether I need to be on the medication Lovenox. In other words, if it’s normal maybe medication is what I need to prevent this from happening again. My geneticist said that with my particular type of gene mutation I do not need to be on Lovenox, but I’d like to get my Seattle doctor’s opinion. My local OBGYN says he communicates with the doctors at Seattle Reproductive Medicine (just like my prior Reproductive Endocrinologist). He said he will ask the question regarding whether Lovenox might be needed for my next pregnancy. My local doc seems to be on the fence about the Lovenox. I’ve also heard that some women with my issue also take progesterone, even if their levels show normal. I think I will also ask my Seattle doc this question too. I need to do my own research as well.

 

I have to have surgery Wednesday, due to this being a “missed miscarriage.” My doctor advised me to cancel my trip to Denali I had planned for the weekend. I’ve been dealing with some cramping, no bleeding yet, and still very nauseous. The most worrisome symptom have is that I feel like I’m going to pass out several times a day. The other day I was in the shower and all of the sudden my upper body felt really heavy and weak. My vision started to go black from the outside moving inward to where I could hardly see. I got out of the shower and lied down right away. I ate breakfast before my shower with two cups of water and some juice, so I had enough in my stomach. In hindsight, each of my miscarriages I felt this same way, like I was going to pass out or like I was incredibly dizzy. I asked my doctor about this and he said it could be due to the dropping levels of progesterone from the miscarriage. He suggested I eat small and frequent meals throughout the day and drink plenty of water to prevent this.

 

As far as how I’m handling it emotionally, it hasn’t been easy. But I decided to take a week off work for several reasons; 1) I don’t want to start miscarrying while I’m at work, 2) I need several days to recover from the surgery, 3) I need to take this time process the loss before I jump back into work. Based on my past experience with missed miscarriages and surgeries, taking a week off seems to be the perfect amount of time for me to move on physically and emotionally. With my very first loss I needed two weeks, mostly to deal with it emotionally. I suppose I’m bouncing back faster than I used to.

 

Honestly, at first I was inundated with all the “should have, could have, would have” thoughts. It was overwhelming to think about all the variables I could have adjusted, and maybe this wouldn’t have happened. If you are going through a difficult situation like myself, I think it’s incredibly important to not place blame. It took me so long to come to this realization. Don’t place blame on your doctor, don’t place blame on God, and don’t place blame on yourself. The sheer amount of negative energy that comes from those thoughts can make you become blind to possible answers that can lead you in the right direction. Blame closes off opportunities, whereas acceptance can bring clarity. By acceptance, I mean accepting what you are dealing with right now in this moment and moving forward.  

 

The other day I visualized myself standing at a fork in the road. I could take the dark, bleak path or I can choose the more vibrant path. The dark path is depression, confusion, negativity, and feeling stuck. Whereas the brighter path is gratitude, strength, inspiration, and growth. Admittedly, I was already in motion toward the darker path. But instead, I made the turn and began walking the brighter path. You can also choose the direction of your journey, no matter how far down the dark path you find yourself, you can always turn it around. Yes the outcome with each pregnancy may be out of my control, but what is in my control is my perception. Some people have told me I should maybe give up trying to have a child. But there is something inside me that says, “No way! Not yet.” It’s like a fire that is still going strong inside me, despite everything that has happened. As long as that fire is still burning, I’m going to continue this journey. 

 

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Week 9 of Pregnancy: Top Secret

Week 9 of Pregnancy: Top Secret

(Entry written prior to posted date)

Date written: 9/3/19

 

PLEASE READ FIRST: Although this pregnancy ended in a miscarriage, I still wanted to share my experience of this pregnancy. I wasn’t ready to talk about my pregnancy as it was happening, so I wrote this entry prior to the date it is posted.

 

I’ve decided this pregnancy needs to stay a secret from pretty much everyone until I at least pass my first trimester. This is proving to be difficult while I continue to write posts about other things going on simultaneously. For example, while I was waiting to get tested for the MTHFR gene mutation and when I got my results what I didn’t tell you all is that I was mostly there for testing my HCG levels because I was pregnant. Sneaky, sneaky. I so wanted to share the news because I was so happy but I ultimately chose to wait because I wanted to not deal with the questions I would get. I tend to be OCD at times and I overly research the s**t out of things enough as it is with this pregnancy, almost to the point of neurosis. So I really didn’t want to have the added stress of other people’s questions and worries on top of my own. For this pregnancy it was more of a strategic stress management decision. I wanted to reduce my stress as much as possible. I’ve decided to keep this news to myself until I feel comfortable to share it, which in all honestly will probably be sometime during my second trimester.

 

I just got off the phone with the office of my geneticist. My OBGYN doctor referred me there since I was found to be positive for the MTHFR gene mutation. So my geneticist’s office has been playing phone tag with my OBGYN office and apparently didn’t have a clue why I was referred to them. So I had to explain to them that I was pregnant, had the MTHFR gene mutation and needed to find out ASAP whether I should be taking Lovenox or not. So I’m still waiting to hear back. My OBGYN didn’t seem too sure whether I should be taking a Baby Asprin or not, so I decided to continue taking it since I’ve read that it probably wouldn’t do any harm if I took it but didn’t need it. 

 

As far as how I’m feeling, well imagine that every ounce of life has been zapped from your body and that’s pretty much what I’m feeling. I have zero energy, and I mean zero. It takes a decent amount of energy just to get up and get something to eat. I’ve been parked in front of the TV so much my body aches until I force myself up and stretch while I reach for a small snack. I’ve been eating like a bird, very small amounts but frequently. I’m eating frequently because my nausea has been absolutely terrible and the only thing to keep it at bay is to have a little snack in my stomach. I don’t eat full meals much, and if I do it takes me forever to eat it all. I definitely have morning sickness when I wake up. Needless to say Saltine crackers have become my new best friend. We bought a Costco sized box of twelve sleeves of crackers which will probably last me just a couple weeks. 

 

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Positive Pregnancy test on July 26th.

 

A couple years back I was eating a snack at work and my coworker’s face lit up and she said, “Oh my God! You’re pregnant!” I was so confused how the comment came seemingly out of nowhere. “Uh, no, just hungry. I haven’t eaten yet today” I said. She pointed to my snack as if I should have known I was pregnant just based on what I was eating. I was so confused and asked her why she thought I was pregnant. She explained that I must have been because I was eating Saltine crackers and that no one eats Saltine crackers unless they are pregnant. I explained to her that I like salty snacks and that I figured it was better than potato chips. It took a while to convince her that I was not pregnant. Knowing that some people so strongly associate these crackers with pregnancy is going to be a problem for me while I try to keep my current pregnancy under wraps. They are the only thing keeping me from being barfy. Granted I no longer work with that person, but I am a terrible liar and need to figure out how to maneuver around this possible question. Mamma needs her Saltines! 

 

As far as emotionally, I’m excited that this pregnancy has been going well so far. I’ve had no problems at all other than some random sharp pains. But my baby’s heart is beating well and it’s measuring perfectly on track with the ultrasound. Kurtis had to work that day so I’m hoping he and I will be able to actually see the heartbeat the next time we are there. And maybe we can actually make out some body parts instead of it appearing like a blob where it’s hard to even tell where the head is. I’m counting down the days. We are doing the appointment and ultrasound on Friday the 13th. I hadn’t really thought that one out, but I figure with the terrible luck I’ve had in the past maybe I should play the “opposite game” and stick with that appointment date. Maybe our little one will be just as healthy and strong as it was with the first ultrasound but bigger. 

 

I’ve been using the Ovia Pregnancy app on my phone. I love that app because it gives an adorable cartoon rendition of what the baby looks like at each week of the pregnancy. It also tells you what size the baby is, mostly in fruit, but this week my baby is the size of a southern pecan according to the app. It even shows you the actual size of the baby’s hand which really adds to the cuteness factor and will make anyone go “awww.” 

 

As much as I want to be in the moment I also really want this first trimester to fly by, so I can feel some sense of security knowing the miscarriage risk is lower. I know you can lose a baby at any point during the pregnancy. But to get past the first trimester would be amazing and surreal, because I’ve had that chance. Even now, when I think about how this time next year I could be cuddling with my baby, it seems very surreal. The best way I can describe it is when you have such a strong dream in your heart, but you’re told it will never happen, and then way later down the road it suddenly becomes a possibility. It’s hard to fully embrace that reality when you feel like it can be ripped out from under you at any point. But I still carry on and try to stay optimistic.

 

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MTHFR Gene Mutation Test Results

MTHFR Gene Mutation Test Results

Today’s post will make more sense if you read my last one. So rather than recap everything again that lead up to these results you can go ahead and read that one by clicking here. I may have called the clinic three times to ask about my results over this last week. No one seemed to have a time frame for me of when to expect the results and they said, “This test takes a little longer.” 

 

Finally my doctor called when I was in a Wendy’s drive through with my Mom who was driving, I was visiting her that day. I had my phone up to my one ear, and my finger in the other ear trying to block out all the unusually happy workers inside who were all laughing hysterically about something for what seemed like five minutes straight while I was on the phone trying to hear what he was saying.

 

“You tested positive for the MTHFR gene mutation,” he said. He went on to explain some details that I wasn’t able to grasp in the moment, probably due to a combination of not hearing him and not actually processing all the info. I had to call him back later to actually write down what he was trying to explain to me. He said I have the “MTHFR gene mutation C677T heterozygous single version.” He thinks that some of my miscarriages may have been caused by this gene mutation. Essentially, when you have a MTHFR gene mutation your body cannot process folate well, which is an incredibly important vitamin that helps the baby grow properly. 

 

I had very conflicting emotions with this news, mostly a combination of anger and relief. I was so angry that none of the doctors had realized this earlier, and that one doctor mistakenly told me that I was negative for this gene mutation when she really meant to say I was negative for Factor Five. So I went on to tell my next doctor and several other medical teams I was working with that I did not have MTHFR, going off what she had told me. Sadly, none of these doctors thoroughly looked into my file. Had they done so I may not have had to deal with 2.5 years of five miscarriages and paying for IVF. 

 

I’ve heard stories of women who’ve suffered through many miscarriages before their doctor tested them for MTHFR gene mutation. When they discovered they had it, they were put on the proper medication and vitamins and boom…they have a healthy baby in their arms. I pray it will be that simple for me as well, but I also have Low Ovarian Reserve so it probably won’t be that easy. On the other spectrum of my emotions, I am feeling so much relief knowing that a huge missing puzzle piece has finally been found. But to be honest it is going to take a while to get over my anger. I think in time I will get over it, but right now it is pretty difficult.

 

I sat at Mom’s dinner table and talked about the news with her. She was the one that had mentioned to me several months back my Aunt has the MTHFR gene mutation. This perked my ears up because I remember hearing that acronym as part of the fertility tests I thought I took early on. I explained to Mom, “Had you not told me that, I would not have double checked that I actually got tested for it.” Mom got kind of teary eyed and said something to the effect of, “I didn’t even realize that was something related to fertility.” In other words, Mom had no clue the wheels she had set in motion for me. But I’m glad that she did. I’m also glad that my Aunt spoke up about her medical issues that were caused by the MTHFR gene mutation. Those conversations led me to my diagnosis that could help with my fertility, and ultimately help me to have much greater odds of having a baby.

 

I am brand new to this diagnosis so I have much to learn about it. I’ll probably do informational posts on it in the future. One thing I mentioned to my Mom is that I learned the MTHFR gene mutation has been correlated to some cases of cancer. So my diagnosis has sparked her curiosity into whether she may have the MTHFR gene mutation as well. She has beat cancer twice already and is the strongest woman I know. She said she would look into testing. It’s kind of surreal to finally have a concrete answer as to why I have recurrent miscarriages, and even more so surreal there may be a simple solution of medicine to help me. My OBGYN referred me to a geneticist that I should be seeing soon. Maybe next year we will finally have our little one.

 

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A Doctor’s Mistake & Possible MTHFR Gene Mutation

A Doctor’s Mistake & Possible MTHFR Gene Mutation

So I’m waiting, and waiting, and waiting still for my MTHFR gene mutation test results. Technically, I’ve been waiting about 2.5 years and just didn’t realize it. “How is that possible,” you may ask. Let me take you back to the beginning. Doctors typically look at the more common explanations for recurrent pregnancy loss with the basics; thyroid, progesterone, Rh factor, Factor V Leiden, and MTHFR to name a few. These basic tests help determine the correct treatment, and ideally prevent unnecessary heartache from miscarriage after miscarriage. If all of these tests are negative then further more in-depth testing can be done.

 

I vividly remember sitting in my first RE’s (Reproductive Endocrinologist) office years ago and hearing her explain my results to me. One by one she read my results while reading a paper from my file on her lap, “Thyroid is good. Progesterone is fine. Rh factor is positive, so that’s not an issue at all. No Factor Five and no MTHFR.” No MTHFR. No MTHFR. That’s what sticks out in my mind all these years later. I can still see her smiling at me optimistically, which I’m sure she wouldn’t be doing the same thing now had she seen everything I’ve been through over these years. But she retired shortly after I began my treatment with her. She was a nice lady, but in hindsight she seemed a little flaky and unfocused. But back then I attributed her forgetfulness of the details of my medical history to what I’m assuming was a high number of patients she was juggling. 

 

Flash forward 2.5 years later to now. That first RE retired, my second RE retired this year, and my info was passed along to an OBGYN office in the same building. I called my insurance company and learned there isn’t a single RE left in the state that is in-network any longer. So I’m shit out of luck as far as getting a specialist who is properly trained in cases such as myself. What does this leave me with? In the new clinic I did what most of us do, ask a lot of questions in hopes they will be able to give us breadcrumbs to the solution. It felt like pulling teeth with this one though. She seemed mildly irritated with each question I asked. What she didn’t realize is that she was sitting in an interview for a position that can mean life or death. Not to be melodramatic, but that’s truly the reality of what I’m dealing with, the life of my future child. 

 

I had high hopes for this young representative of this OBGYN office who my newly retired Reproductive Endocrinologist highly recommended. But my final question I posed to this fresh-faced doctor was what truly sealed her fate. It was basically a set up, I’ll admit, but I had to ask it to truly learn what I was working with. I asked her, “What do you recommend I do to improve my egg quality?” Mind you, I have recently done a massive amount of research on this subject this last year, from reputable medical journals and some of the most well-renowned books published on the subject, including the book “It Starts with the Egg.” I’ve already put into practice some of the medical advice on the subject. 

 

“Well” she starts, “We are born with a certain number of eggs. We can’t change that. And sometimes miscarriages just happen. There’s nothing you can do about it.” I could tell she says this quite often. Her face was completely blank and her eyes seemed distant like she was trying to figure out what she wanted to order for lunch. Her words may have been consoling to someone who might be experiencing their first miscarriage, in fact I know I’ve heard this before from another doctor I stopped seeing years ago. When I get a gut feeling that a doctor isn’t doing everything they possibly can, I usually move on to the next one, as anyone should. 

 

So what exactly was it about her response that pissed me off. Well she didn’t answer the question I actually asked her, for one. I asked about egg quality, not egg quantity. I know there’s absolutely no way you can increase the number of eggs you have. But I do know that there are studies on how to improve egg quality on the eggs that you have remaining, which can increase the odds of a live-birth. The problem with her answer to me is that she was either one of two things, 1) Not paying attention to my question, or 2) Uneducated on the correct response. To her credit, she contributed one solid lead for me to follow, with a different doctor of course. That lead was that she had looked through my entire file of many documents and found no MTHFR results. 

 

Interesting, no MTHFR results. Could this just be an oversight on her part? I hoped this was the case. One of my Aunts recently told me she has the MTHFR gene mutation and she was telling other family members to get tested for it. Because of this, I decided I should double check that I truly am negative for the MTHFR gene mutation. If you haven’t already googled what the MTHFR gene mutation is, it’s essentially a mistake that occurs in how people process folate which can lead to a variety of complications, recurrent miscarriage being one of them. The doctor’s parting words were, “You don’t need to get tested for MTHFR. Just make sure you take a prenatal with folate.” Let me disect this response as well, firstly if I did have MTHFR, it’s recommended that you take methylated folate during pregnancy, which is often not found in your basic prenatal. And why the hell would I not want to get tested for MTHFR if I have a family history of it and I’ve had five miscarriages? Why would I not want to find that out? At that point I thanked her for her time and we both left the room quickly. I’m assuming for her it was because her stomach was rumbling and she needed lunch, and for me I left quickly because I knew I wasn’t going to waste another minute with someone who seemed disinterested in helping me. I later read in my infertility groups that many other women have the same experience of a doctor being dismissive of their request to test for MTHFR and that some patients really have to push doctors to get this test done.

 

I called back a few days later and asked the receptionist to patch me through to a nurse. “Can you see if I have been tested for MTHFR at all?” I wanted to know for absolute certain that I had not been tested for MTHFR, because I was questioning how thoroughly the doctor read through my file. The nurse on the phone scoured through my medical history, I know this because I could hear her turning the many pages of my file. Finally after about five minutes she said, “Well I see here you were tested for something similar to MTHFR, Factor Five. But nothing at all on MTHFR.” She even reviewed my genetic test called a Horizon panel, which tests for 274 different genetic carrier diseases that both my husband and I took years ago. The MTHFR test wasn’t in that one either. She asked if I wanted to come in to get tested for it and I agreed, but later decided not to show up, remembering the shitty experience I had with that doctor. I thanked the nurse for her time she put into carefully poring over my file. I decided to use this bread crumb of information to move ahead, but not with them.

 

Instead of feeling obligated to continue care with that provider just because my previous Reproductive Endocrinologist recommended them, I decided to call up my OBGYN I used for my past surgeries after I lost my pregnancies. He previously recommended I ask most of my questions to a specialist, a Reproductive Endocrinologist, because he didn’t have all the information I was asking about. But now that I have zero RE’s that are in-network, I decided to go back to his office to at least test me for MTHFR. So I stopped by, did a quick blood draw, and now I’m waiting for the results. I’ve been waiting about five days now and I called several times. They said it takes a bit longer to get that specific test back. 

 

If I have MTHFR I can get set up on a treatment plan. If I don’t, at least I can finally rule that out. I feel I have a right to be angry, I was told I was tested for it but I really wasn’t. My second RE even asked me, “Have you been tested for MTHFR?” as she was looking through all my documents. I told her I was tested and found to be negative, because I was going off what my first RE told me. My second RE stopped searching through my file after just a few pages and took my word for it, she should have looked more deeply into it. Admittedly, my file is quite intimidating. It’s about as thick as a 500-page novel. Maybe that’s why she decided to stop short. There were a series of oversights along the way, and that is what bothers me. 

 

I believe this is not just a personal issue either. I feel that if this can happen to me, it is also happening to some of you as well. What would I have done differently if I were to do it over again? I would have examined my own copy of my file yearly, looking for any gaps in testing. But in the beginning you trust your doctor, you trust the process, and you believe you are doing everything you can. But doctors make mistakes, sometimes major mistakes. Sometimes you can’t take their word on something and you need to see it in writing in your hands. I wish I would have asked to have a copy of the test results and actually see the words MTHFR Gene Mutation on the paper. But that paper doesn’t exist because neither did the test. 

 

Throughout this whole process I’m learning to do my own research and take initiative. Because if you just go with the flow of whatever the doctor says you may end up so far away from your solution. Speak up and ask for the testing you need. If your gut tells you, “They don’t know what they are doing” listen to that instinct and find someone who at the very least listens to you. Because if they truly listen and still cannot help you at least they can hopefully point you in the direction of where to go instead.

 

I will let you all know as soon as I get the results from my MTHFR test. For now, I’m considering seeing the highly recommended RE that is not in-network with my insurance. Perhaps she has some advice that can actually help me achieve my dream of having a baby. I told myself I would pay off my debt first before I go down and do the Frozen Embryo Transfer in Seattle. I still have a good chunk of debt left to pay that feels like it’s turning into a Whack-a-Mole game, pay off one bill only to have another equal or more expensive one appear in my mail. I’ll get there eventually. 

 

I’m still exhausting every single possibility of trying to have a biological child. So for all of my family and friends saying, “Why don’t you just adopt?” or “Why don’t you just foster?” I humbly say to you, in time I will, but I don’t want to split my energy in different directions right now. I want to focus on one thing at a time. Some acquaintances I meet ask why I don’t have kids yet. I don’t feel obligated to give them my medical history so instead I give them the canned response of “We’re trying.” The more brazen acquaintances then jokingly say, “You don’t have much time left. You better get on that.” It’s at this point I imagine myself as Mike Tyson punching the shit out of them repeatedly in their smug face, and maybe biting a piece of their ear off for good measure. I’m joking, sort of. But unfortunately they have a point. I’m 33 and I don’t have much time left, which is compounded even more so by the fact that I have Low Ovarian Reserve. So right now this is my focus and I’m doing everything I can.

 

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