Surprises

Surprises of all kinds come at different times of life.  Sometimes they come with ironic timings; such has been our recent experience.  The first surprise I want to talk about is somewhat of a positive surprise.  Even though it’s “bad news,” at this stage of the game, diagnosing the fertility problem is a huge blessing no matter what the problem is.

A test came back from the clinic that revealed our losses may have been caused from Kevin’s side this whole time.  I don’t think we were expecting that at all, but I was so relieved to have a new diagnosis to follow since my health issues have been treated and treated and never changed the outcomes of our pregnancies.

Kevin has an abnormally high amount of Fragmented DNA in his sperm, more than a third of them in the sample that was tested.   He also has a high level of oxidative stress.

We started doing some research about this problem and found lots of interesting information:  

-If the level of DNA fragmentation exceeds 30% then a couple’s chance of delivering a baby, through Intra Uterine Insemination (IUI) treatment, fall from 19.0% to just 1.5%.   (I would add conceiving the old fashioned way as well, IUI is just a way to help sperm meet egg)

-Increased levels of sperm DNA fragmentation can cause recurrent pregnancy loss and increase the risk of cancer in offspring (including childhood cancer).

-What happens when Sperm DNA is damaged? When a sperm penetrates an egg, the DNA of both cells combine together. The female’s egg contains many DNA repair mechanisms, which attempt to repair sperm DNA damage incurred during the sperms journey to the egg. These repair mechanisms can mask the effects of damaged sperm DNA during the early stages of embryonic development, such that embryos created through IVF/ICSI will appear normal to the embryologist in the laboratory.  The more serious consequences of sperm DNA damage can manifest later in fetal development and lead to early miscarriage.

The most important thing for us would be getting a much higher number of healthy sperm.  Sometimes this can be accomplished with vitamin therapy.  It kind of depends on the cause of the fragmentation.  It’s weird in Kevin’s case, because most of the risks for it don’t apply to him.  He’s not old, he doesn’t smoke or drink, he’s not exposed to lots of toxic chemicals, he hasn’t had a high fever (at least not since 2012 when we started having losses), etc.  

I do wonder if he has had some sort of long term illness that we haven’t known about.  Lots of his physicals since he was a kid have shown a small amount of blood in the urine not visible to the eye, but no one has known why.  We will most likely meet with a urologist who specializes in male infertility through our clinic.  I think it’s possible Kevin has had this problem his whole adult life and just not known it.  In which case, I would think the most likely cause would be varicocele (an enlargement of veins within the scrotum) If this is truly the case for Kevin, there is a surgery they can perform to correct the problem, which has a high success rate.  So I am hoping this is where his problems are stemming from (because there maybe an actual solution) We read that a varicocele usually causes no symptoms.  Here is some more research that really intrigued me.

Varicocele is the dilatation of the pampiniform plexus caused by the reversal of venous blood within the spermatic veins [1]. Varicocele is an underlying problem in male infertility. The prevalence of varicocele has been reported to be as high as 10~15% in the general population, 30~35% in men with primary infertility, and 69~81% in men with secondary infertility [1]. Many studies have been conducted to explain the pathophysiology of testicular dysfunction occurring with varicocele. The exact mechanism of infertility caused by varicocele is not understood completely. The most likely explanation is that germinal cell dysfunction is secondary to hypoxia from the obstruction of small vessels and venous stasis [2]. The back flow of adrenal and renal metabolic products through the left internal spermatic vein, an increase in scrotal temperature, and endocrinological changes are other explanations that have been proposed to explain infertility from varicocele [3–5].

Additional hypotheses on the mechanisms of infertility in men with varicoceles are associated with increased oxidative stress and decreased antioxidant capacity. This parameter has been linked to sperm DNA damage, such as DNA fragmentation, and correlated with the reduced ability of spermatozoa to fertilize oocytes in assisted reproduction techniques and normal fertility [6, 7].

A varicocele was detected by physical examination and confirmed by Doppler ultrasound in the 92 patients who entered the study. The demographic and clinic findings are provided in Table 1. The mean age of the 92 men was  (range: 22–39) years with a mean duration of infertility of  months 21.6 +/- 9.2.  Eighty patients (84.2%) presented with a varicocele isolated on the left side, and 12 patients (15.8%) had bilateral varicocele. The preoperative follicle-stimulating hormone was measured in 58 patients, and the median value was 4.8 mU/Ml (1.9–25.1). The preoperative testosterone was measured in 29 patients, and the median value was 3.2 ng/dL (1.8–7.3).

In the present study, the patients showed higher sperm count, progressive motility, and normal forms 6 months after subinguinal microsurgical varicocelectomy. Furthermore, there was a large decrease in DFI from a preoperative mean of 42.6% to a postoperative mean of 20.5% 

Is this the only source of our problems?  I don’t think so.  I have obvious blood clotting problems, obvious folate deficiencies, low thyroid problems, etc.  The difference is, all of those issues have been treated with medication and supplementation. They’ve had a close eye kept on them and the docs have been stumped why nothing has changed in the slightest.  We also have always wondered how Jack was such a normal pregnancy when all I took with him were prenatals and baby aspirin.  It makes much more sense that perhaps Jack was conceived with a healthy sperm and had good DNA match up properly.  So maybe it isn’t so much my body, but the DNA in our embryos being broken.  We still need to get our karyotyping done- that would show if we have a problem in our ACTUAL DNA as well, not just healthy DNA getting fragmented.  If the problem truly is a varicocele, that would also explain the high level of oxidation. 

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Now here comes the irony.  The same day we found out about Kevin’s DNA fragmenting, we found out I was pregnant.  This was not a planned pregnancy since we wanted to wait on the test results.

 I had a suspicion our birth control may have failed a few weeks before and had started on preventative medicine including progesterone just so I didn’t underestimate the fertility of my body (I wasn’t wrong).  At this point, we were still considering the cause of our losses to perhaps be from some autoimmune problems.  There is a whole other world out there friends, a complicated world of immune responses and problems. As my mom says, I'm a poster child coming from a family with all the weird auto immune stuff that docs struggle to even identify.  During this two week wait to find out if our birth control actually failed, we got my egg quality testing back, and the results were fantastic. 

The bad news is, my thyroid is not great.  In fact it was shocking at how much it had changed in the wrong direction in just 6 months.  That was really frustrating- what changed?!  But I guess that’s why they call it a disease-the thyroid is just diseased and it gets worse if it feels like it.  I started on new medication to try and get my thyroid back on track.  This made me particularly anxious to find out if our birth control had failed because a functioning thyroid is so essential to a healthy pregnancy.  I would be stupid to attempt pregnancy knowing my thyroid wasn’t even within range.  This is why we ask God to make up for our shortcomings, and our health.  I would continue to pray and say “I am really scared about my current thyroid state.”   

I started feeling very down, thinking “I'm so done, I'm so angry, the universe hates me, I don't want everything to be so heavy and complicated because my health doesn't do well on birth control and I also can't get pregnant.”  It was a bad day, when for some reason, my computer background changed itself to a picture of a positive pregnancy test from my last loss.  I just felt like someone had spit in my face.

I had to start making some decisions in case we were pregnant.  I decided not to do the beta blood draws, because watching those numbers is far too stressful.  I was surprisingly at peace with the idea that I could be pregnant, but I couldn’t stomach the idea of watching numbers in my blood every 2 days.  We also decided I would do the Lovenox injections again- that combined with the Deplin would be an aggressive treatment for MTHFR, so once and for all we could maybe rule that out as the actual cause of loss (as far as we could ever tell). 

I started worrying about feeling judged if we found out we were pregnant again already- four and a half months after our last loss, but I tried to remember that our family is no one else’s business.  When people don't get pregnant, they try every month.  For us, it's about the same trying to have another child, except we have pregnancies that last a few weeks. I've kind of come to terms with understanding we are going to have lots of pregnancies and maybe only a couple of kids (hopefully).  My son is going to be 4 in the fall, I'm allowed to try for another. I'm allowed to try for a pregnancy after a loss, or several losses. 

Even though I've accepted that we'll need to go through several pregnancies, I don't want to waste a chance without knowing exactly what we're doing and why, we need to go into a potential pregnancy with a plan.  This is why surprise pregnancies just aren’t an option for us.  My whole goal became “no stress” and I just kept saying, “What will be will be. One or two little decisions won't change the outcome either way.”
 

When I get that positive test, I still feel like it's not real. People say congratulations and it doesn't feel like I deserve it. I stand in line next to big beautiful bellies and I feel like my pregnancy isn't as real as theirs. Like you can be pregnant and still feel like you're trying to be pregnant.  I feel like this situation is so lose-lose. If it's negative I will be relieved and so sad and baby hungry. If it's positive I will be happy yet so full of dread. I don't think that God expects me to not be afraid, but to trust Him reagardless. I repeat to myself often, “God knows more than me. The end.”  And then, there it was:

Two lines.  The second one faint, but before I had missed a period, so we had caught it as early as possible using home tests (the test the day before had been negative).  I had been so sure that we weren’t pregnant after all. I just couldn’t believe it. 

 

   

I was able to post all my thoughts right away on my Secondary Infertility Group on facebook and was met with such an outpouring of love and support from people who actually KNOW how I feel.  That meant more to me than words can say.

All of this was poor timing and right before a move.  We were in the middle of work, packing the house, all kinds of logistics to work out, and lots of hard tests for Kevin at school.  I was nervous about having a bruised and sore belly from those shots during the move.  The idea of lifting boxes with that soreness felt like another needle in the belly. 

We got those results from Kevin’s test back later in the day, after we found out we were pregnant.  What strange timing it all was.  I was hoping there was more reason than just irony, like somehow the baby would be a miracle.  Maybe we wouldn’t have to spend money on all the interventions after all.  Strangely enough, the news let me relax because this baby's fate was probably already determined at conception because of his or her DNA. That meant that there was a chance for hope, and since I was doing everything I could, I didn’t need to worry that one or two decisions would cause a loss.  I told myself, “Your.body knows what it's doing. Relax and let it do its job regardless of how many symptoms you may or may not feel, and trust that if the DNA is good, the baby will be healthy.”

Now let me just tell you how much I hate these blasted shots.  They burn more than any shot I’ve ever had.  I try to ice afterwards but I feel like I can’t get it cold enough under the skin.

In 11^th grade, when we read The Crucible, I remember that I couldn’t get the scene out of my mind where Abigial sticks a needle in her belly to accuse Elizabeth of witchcraft.  I just walked around all day thinking “HOW could you EVER put a NEEDLE in your own belly?!”  And yet, here I was.

Luckily, I have a great friend who is a nurse, who was willing to help me out.  And Kevin learned how to give me the injections.  He gave me his very first shot, and it was terrifying to be the guinea pig, not going to lie. 

lovely Heidi about to put a needle in my belly.

I took these "belly pix" knowing they might be the only ones I would have for the pregnancy

The timing made me feel a bit on edge. Moving is hard work, so is working in general.  I kept thinking “I'm carrying someone very precious and very fragile, I just feel like I should be resting more.”

The move went well, I got nervous every time I exerted myself. And I got nervous about starting aspirin in addition to the lovenox shots, like “I hope I don't overdo it on the blood thinners.”  And let me just tell you how sore my belly was. It is somewhat difficult to move and sit normally when you get a burning shot in the stomach every day and give it no time to heal.

Happy in front of our cute new townhome we're renting

We kept talking about this baby like "she" was really going to be born.  We stopped saying “if” and replaced it with “when.”  I wasn’t sure if that was faith or getting our hopes up.

When some tinted discharge started and I started wondering if the baby was ok, I was crushed times a million. Why does God never see fit anymore to just let one of my babies make it. No miracles. Just cold hard reality that breaks my heart over and over. I've tried to do everything I can for so long I should just quit. Then things got better for a whole 24 hours.  Then I saw a tiny bit of bright red blood again, a minuscule amount, but just enough to make you wonder what is going on inside  Then it would stop. 

The random bleeding episodes were accompanied with the sharp pains on one side (that I kept trying to explain in any other way besides ectopic pregnancy or miscarriage) I kept trying to believe there was hope in spite of the on and off spotting (which may or may not be normal) because some women have it in healthy pregnancies, and I was on a strong blood thinning regimen which would explain why I didn't have this type of spotting before with Jack or my losses.  This was different and terrifying.

I knew God could save my baby. I just hoped he wanted to. 

I posted how I was feeling in my support group, and got a lot of encouragement and love that way.

“This has been such a difficult week. I got my BFP last week when we weren't trying (lost our last 5). The same day we find out my husband's sperm has a high level of DNA fragmentation contributing to our losses along with my problems. I am thrilled to be pregnant but so terrified. I've had on and off spotting for a few days that may or may not be normal and find it so difficult to keep going with real life and work when I don't know if the baby is ok. The spotting may be due to the blood thinners I hope. It is so hard to take a shot in the belly every day. I am getting so sore and bruised, but it would be so worth it. I'm praying God saves this child. Also, we moved two days ago and I am exhausted. Thanks for letting me vent friends. I just want a healthy pregnancy.”

In the end, history repeated itself.  I woke up after having pain through the night.  I started having breakthrough bleeding, lots of red blood and passing little clots.  I eventually confirmed it with a HPT.

How is that picture for a kick in the gut?

I'm devastated that it wasn't our time, again. I think this loss would have killed me if I didn't know there was a new direction for us to follow. If we can address Kevin's problems maybe we can have a healthy baby. 

Could it really be six losses now? Six? But I count, and yes.

One in 2012. Three in 2013. One in 2014. One in 2015.  

God must think I am a pretty strong person but i beg to differ at this moment. I was so ready to have this baby and raise him or her in our beautiful new house. Figure out a way to be a stay at home mom again.

The day I found out, I was scheduled to work.  I understand when no one can take your shift last minute, but I asked seven people and none of them could. I think that was the toughest part- pick myself up and make it through at least one shift.  I was just praying please let someone cover for me.  I knew it wasn’t a good idea to call out sick again because I called out when my grandpa died a couple weeks ago.  And I'm so behind on hours (which I need to maintain our insurance) from taking off time to move and to get my CNA (so I can pick up that position along with being a coordinator at work.)  God give me strength to get through this month so I can continue to support my family.  

At work, I started feeling light headed, nauseous, dizzy, numb, and had waves of pain.  I dreading the thought of getting through a shift and just wanted to crawl into bed.  Fortunately, I left an hour early and was able to call out for the following day.  I had this strange crushing guilt being at work.  It was like I didn’t take any time to mourn and jumped right back into normal life, and that felt wrong.

I looked around my house (not yet unpacked) and felt overwhelmed with emptiness. Usually I can fill that void with thoughts of my family and my boys, but for now, it is emptiness. And shock and horror.  And feeling like, “Ok that's it, God really isn't sending more children to our family.”  I don't want to leave my house anymore but hopefully that will change quickly because I have three weeks straight in March without a day off.

 If I answered honestly, I'm not really doubting the Lord's love for me, but I wonder when will relief come?  When will peace finally come, even if it comes during the emptiness?  I feel so beat down right now, can't find my happy thought. I am glad that it appears to be from Kevin's side so maybe we can stop focusing so much on my blood.

Kevin having the issue makes more sense, and now we've proven even with aggressive measures, they can't make my body keep the baby, so it's likely bad DNA. Tears just continue to come so easily. It's like we could just picture baby coming home to our new house. Why do miracles take so long sometimes? This wasn't even planned; I don't understand why it had to happen.  It's almost embarrassing how many times we've been through this, but what else do you do when you're trying to have babies and there's "always a chance?"

I know I need to go get an IUD so we don't have any more surprises, but I don't want to. I'm mad about it, I just want to have a baby instead.  But the road ahead looks so long. And painful. But hopefully if you take away the losses and just leave the doctor appointments it will be more manageable. If this emptiness ever goes away.

 I start to panic thinking “what if it's not just Kevin's stuff, but my stuff too?  Even if we got a healthy embryo, what if I still couldn’t carry it?  What if the blood thinners were too extreme, what if they made it so the embryo couldn't attach?  What if it is a combination of all our problems with so many variables we'll never figure it out?”  At that moment, I have to ask myself, do I really believe God is in the details?

I still have my fertility and I have my youth. I just need patience and strength to bear this incredibly heavy pain and emptiness that I try to put aside probably 15 times a day in the middle of normal life. Grief is real, and 6 consecutive losses is real grief.

My sweet husband bought me flowers while I was at work, and unpacked these two pictures so that I saw this display when I came home.  I am so thankful for his love and support through our losses.

When a Son Comes First, Losses May Follow (science may suggest)

Whenever I feel like it’s been too much and I’m about to give up- I learn something else that keeps me in the game just a little longer.  I feel like I’ve had some pretty significant discoveries in our research this week in what may be the cause of our losses, but I’ll get to that in a minute.  

I have to say looking back at the couple posts immediately following our last loss, I was in a pretty dark place.  It was one of the worst losses I feel I’ve experienced emotionally.  I’m happy to report that I am doing much better now.  The pain doesn’t go away, but you don’t want to live in darkness and sorrow for the rest of your life.  You have to pick yourself up and keep going. 

I was blessed to meet a friend online who really helped me put it in perspective as to why I was having such a rough recovery after my fifth loss.  She talked to me about compounded grief.  When you suffer multiple losses, each loss you have adds to the burden.  So you are not only mourning the most recent loss, but the four babies who came before it.  The loss brings everything back up.  I feel like in dealing with compound loss I also suffer a greater loss of hope each time and experience more despair.  It feels like “reality” takes over and “hope” for what we dream of takes a backseat.  But knowing that it was ok to mourn for all five at once helped me accept my pain and deal with it.

I’ve had people tell me that I need to learn not to “stress so much” during a pregnancy since it can contribute to a loss.  Well let me just tell you how easy that is.  I really do try, with all my heart.  I pray, I meditate, I visualize positive things, I rest, I do happy things.  But the worry is so deep I don’t think it’s something you can totally let go of.  Statistically, your baby is not going to make it.  I’ve often compared it to an imaginary situation where Jack is in critical condition in the ICU or something.  If my little boy was on life support, and we didn’t know if he was going to make it or not, would people tell me not to stress and to calm down?  Though the situation is not the same, to a mother’s heart, that is how the situation feels, of being pregnant and unsure if the baby will live.  Every moment is critical.  You try to be positive, but the reality is bad things happen and you have to brace yourself for it. 

  
I talked to my mom quite often during those first hard months.  I felt like I couldn’t feel sad because I still have so many good things in my life.  But I think you have to still let yourself feel sad, or it will come out anytime, like in church in the form of a panic attack.  I had migraines and heartburn and restless nights.  I felt guilt all the time for skipping things and letting the house go.  I felt sick often and just couldn’t get out of bed.  I would take medicine and find all of my strength just so I could go to work.  I finally felt like I had it together enough to go back to church, and then remembered I had to work at 630am that week.  I felt like people were going to judge me for not recovering fast enough.

But I was recovering, and learning.  And now, some of those thoughts seem silly to me.  It’s ok that hard things are hard, and take time.  My mom would tell me “Please put music on in your house, that always makes you so happy.”  And she was right.  I tried to find lots of little things that would bring me joy and bring me out of the darkness.  I started to give myself little motivational speeches.  “It's ok if you can't have more kids right now. It doesn't suck less, it’s not necessarily about timing or patience.  You just  need to be ok accepting that you can’t have more kids right now, with no strings attached or stipulations for the future. Just be ok for now."

There was a young woman on our floor of the hospital who was a few years younger than me, pregnant with her first baby.  She presented at the ER with some other health issues, but in the process of getting treatment, they discovered that her baby had stopped growing some time before.  My heart stopped as they brought her to a room close to my desk.  I’ve been that girl.  I felt like I needed to go rescue her.  I heard people around me justifying things to try and make the situation less horrible.  “At least she wasn’t 20 weeks yet, at least she’s young, at least…. Etc etc.”                                                                                                           

All I could think is “Grief isn't acquainted with logic.”Grief doesn't care about logic at all.

I got to a point where I felt ready to take care of myself again.  I finally started on the prescription Deplin, a prescription strength high dose l-methylfolate that my body has likely been depleted of my whole life due to the MTHFR.  What a difference friends.  This is a breakthrough for me.  Even though it’s expensive, I feel like when I take it every day I am a different person.  I have more energy, more motivation, fewer headaches, fewer digestive problems, less pain and fatigue.  I feel happier, I don’t cry so much.  It has been amazing to see the difference in my own health, and I do wonder if it would help me maintain a pregnancy.

I still have hard moments where people who were pregnant the same time as me continue to grow and I can’t help but wonder why their pregnancies continue and it’s like mine didn’t even count.  But I’ve learned it’s ok to struggle even when you have lots of great blessings.  Even though there are worse things in the world (many many horrible and worse things) it doesn’t discredit the pain I feel. 

I felt ready to jump back into figuring out what was going on with my health.  I started with going in for some of my back problems.  Thankfully I do not have ankylosing spondylitis, for sure this time.  One of the diseases that run in the family that I somehow dodged.  I do have some spinal fusion and they are thinking it’s more of a musculoskeletal issue or chronic inflammation.  They know that lots of my back muscles are having some problems, muscles spasms and what not.  They drew some labs and I have a follow up this week to see about some treatment.  I am excited- I really want relief.  I’m 24 and I feel like I’m 40 when I move.  I want to start being proactive before I actually get older. 

We made our way back to the fertility clinic for a saline sonogram.  I was nervous about the procedure, but more nervous about the result.  I didn’t know what I wanted to see.  If something was wrong, we could probably treat it.  If everything was healthy, where do we go from here?  $430 later, I had the results of the procedure.  Normal, healthy uterus.  It was more discouraging than I anticipated. 

totally normal and healthy, and to me looked very empty.

My nurse was also disappointed.  It was the last “easy fix” is how she explained it.  Next comes eqq quality tests, DNA fragmentation in the sperm tests, chromosome karyotyping for both of us, etc etc.  But basically, none of those things are an easy, cheap, or guaranteed fix.  They're all super expensive and not very well understood. Or it could still be my blood or MTHFR and we might get lucky with a healthy baby, or not.

 I felt like, if I'm supposed to carry and deliver another child, God's just going to have to do it. I couldn’t see any other answers. They said recurrent loss is one of the hardest things to figure out. It was a hard apt but I called my mom and cried for a while and then tried to focus on all the other areas in my life where I have goals and dreams, and all the other great things we have going for us right now. But I've learned you have to let yourself have a bad day, be sad, slack off, and take that time so that it doesn't last for weeks and weeks. I just felt like I got the diagnosis "you might not be able have more children and we don't know why" even though that's not exactly what they said.

The longer I have lived with this daily pain, the more I learn that "trusting Heavenly Father" isn't so much patiently waiting on him to provide the miracle you desperately hope for, but to trust Him to guide your life so that you can develop into your soul's potential and learn and be things that you never would have expected. It is a hard thing to accept that what you want may never come, and having the faith “not to be healed.”  We have to learn to be happy in our circumstances and find joy in everything we have been blessed with, and find joy and love instead of bitterness towards others.

And in spite of all of it, I do believe miracles happen along the way. Sometimes it's after you've accepted the way you think life is going to go. Sometimes they aren't the miracles you pray for, but how sweet is it to feel God's love after such an emotional journey? And you remember all over again that trusting him is so real, and all that matters in the end when all will be made right. When I got that picture of my uterus I chased away any negative thoughts. I used to have so many self-loathing thoughts because I lost babies, but now I try to think "thank you for being so healthy, and thank you for giving me Jack."  Hating myself won't help anything. Loving my body and being thankful for it leads to more peace, and to taking care of my physical and spiritual needs. I'm more motivated to exercise when I want to love my body, take care of my heart health, and not get diabetes. That is one thing I know I don't want.

I struggle with feeling left out of the mommy club these days.  Most of the kids Jack’s age have younger siblings, and people ask more often why we don’t have more kids.  Or they just always talk about pregnancy and babies.  All the time.  After a while it becomes unbearable.  I feel like I make people uncomfortable who know my history because they  don’t know how to speak to me about their pregnancies or babies or what to invite me too.  And I don’t know either.

One of these days when I was feeling lonely, I told my mom how only one percent of women will lose three or more babies in a row.  She said, “Amber, that is one in a hundred women, that's a lot in the world. You're not alone.”  I thought about that and realized out was true, so I joined a secondary infertility support group on Facebook. I am really happy I did, I'm not out of place in an infertility group where no one has any children, and people understand some of the strange navigation of coming to the realization that you're not having more children even though you've had one.  They understand some of the loneliness in the mom club, etc.

Breakthrough #1 this week:  they say I have no "causation" for my losses yet, but I swear every mom that's had 3 or more losses in a row in this group has MTHFR.  That has to mean something, even if we don't understand all the science behind it. That kind of makes me wonder we should even spend the thousands on DNA testing if this is like the actual problem. Then again, once we know about DNA we know forever, and we're young so it will last a long time. Folate is essential to the attachment phase of a pregnancy....I've never been on a strength as high as with Deplin before, so I hope that will make a difference. And blood thinners are critical, I wonder if I should do injections before trying to conceive and after, and see if a few more weeks on a strong thinner makes a difference. Maybe it's still the luck of the draw with this disease, like how all I did with Jack was prenatals and aspirin. I just pray so hard for direction. Get an IUD and be done for a few years? Try again? Tests? What kind? How can we afford this, should we do everything we can now or save for later? Is adoption going to be in the cards later? I don’t need to know everything now, just a start. I wrote a letter to my nurse saying that MTHFR seems to be a factor in many many women struggling with this same issue and we are also talking about switching my Deplin to a higher dose.  I think we need to talk about naming MTHFR as the cause, and fighting against it more aggressively instead of the DNA testing….maybe.

So it always seems when I’m out of answers, new things come up.  My nurse recommended I visit a website of a doctor in New York who specializes in these difficult cases.  I decided to just skim the website, but I wasn’t expecting anything new or different.  Until I started reading his list of reasons that they would consult on a case.  My heart just about stopped.

Birth of a son followed by multiple losses??! What does that have to do with anything?  How have I not heard of this being a situation?  I’ve always wondered if my firstborn child somehow affected something, because he came so easily.  Well I started doing some research, and according to one study that I found, 74% of SRM (secondary recurrent miscarriage) was preceded by the birth of a son.  These women had a son, and then all had four or more losses in a row. According to this study, fetal cells can end up in the mother's circulation and pieces of male DNA are found in the mother (for up to like 27 years).  That process causes an immune reaction that makes it hard to carry future pregnancies, especially male fetuses.  My mind is blown.  I know I have lots of other factors, but this is brand new and makes a lot of sense.  I asked the secondary infertility support group and found other women with one son and multiple losses after.  One woman has actually seen this doctor in New York.  Maybe after Kevin finishes school we will find our way to New York to see this doctor.  Who knows.  Maybe we will do an online consult (although I’m terrified what it must cost).

I’m just glad that my options are not out yet.  I don’t know what we want to do now.  I’ll have my egg quality tested this month, and then I may consider getting on some more long term birth control so we can take our time and plan the next step.  School and work are busy and we are moving into a beautiful townhome in 6 weeks.  I feel like I may be more successful getting my extra weight off now that I'm on the Deplin and my thyroid is being managed.  I really want to lose some weight and feel more healthy.  My mind is becoming more career oriented as I accept that I may not have a large family.  Sometimes I think about going back to school and having a career once Kevin is working as a DPT.  Only time will tell.   

I just want to end this post with a powerful piece of writing that my baby sister sent to me.  She wrote it for her drama class.  She has such a strong literary voice for 16 years old!  I hope that in time she will learn to feel happy with her body despite any problems, as I am learning to do.  She phrases things perhaps a little differently than I would, but certainly captures that dark places of helplessness we can feel when health problems become overwhelming.  Love you Maddi. 

 "Betrayal of a Body" By Madison Forsgren

De•pres•sion: 1. Feelings of severe despondency and dejection. This is how the dictionary describes what I have. This doesn't even touch the surface. I am clinically depressed. There is a chemical imbalance in my brain. I'm supposed to take a pill to make me feel okay, not happy, just okay. Are pills really the answer? What if I become addicted to them? What if I become numb to what is happening around me? I'm not ready to just take a pill to just be okay. Struggling with depression is hard, to put it simply. It messes with every part of me. It makes me hate myself for the dumb joke I told that nobody laughed at. For the shred of confidence I had before I remembered I'm nothing special. It's unhealthy, the thoughts I have are unhealthy. The habits I have are unhealthy. Everyday is hard... looking for answers as to why? Why me? Why this? And then finding the chilling answer. Getting the text from my sister. I lost the baby. 1.2.3.4.5. This is my sisters 5th miscarriage. I told God. I told him I'd be really good and stop doing everything I did that was wrong if he let my sister have this baby. I promised I'd be good. I messed up. I know it sounds crazy because I wasn't carrying the child. What if my actions made god mad enough that he punished my sister and her family. Mthfr: rate limiting enzyme in the methyl cycle and is coded with the mthfr gene. Symptoms of mthfr include chronic fatigue, irritability, brain fof, anxiety, sleep issues, aches and pains. Those with mthfr cannot break down b vitamins, the vitamin that supplies energy. Mthfr is linked to depression. Mthfr can lead to miscarriages. This is the genetic disorder my sister has. My aunt, who had two stillborn children, has this disorder. This is what I will be getting tested for in a week. This could be my answer. My dooming answer. No one yet knows how to cure or help those with mthfr. I can take active b vitamins to get me up and through the day. What can I do to prevent a future miscarriage?  What if I never get to be a mother? Or what if I lose 1.2.3.4.5. Little lives because my body cannot carry them? My step sisters, who have no gentic similarities as me and my sister and my aunt, have had 3 children with as healthy baby on its way. This taunts my sister. There's nothing to do. My body cannot just be fixed. The depression gets heavier with guilt, heartbreak, loneliness, and confusion. What if in a week, my mthfr test is negative? Why am I depressed?  Why do I hate myself?  Should I even get the test? I feel so betrayed by my own body. What's worse than that? De•pres•sion: 1. Feelings of severe despondency and dejection

One Last Goodbye

I paid off the pregnancy today.  It made me feel relieved, and also sad. The bill was a surprise to us because of some insurance complications. Originally I thought it was going to be excruciating to continue to pay prenatal bills for a child who was never born, because every month I would have to revisit that fact in a very concrete manner. However, in time I found it to be healing. It was a way for me to still feel like their parent. After all, here I was, responsible to pay the medical bills incurred during their short life. I'm still their mother and I still needed to take care of those things. It was a reminder that I did everything I could to keep them alive. The payments recognized that they existed, and left an impression, even if it was small.

Now that the bills are paid off we can move forward with more diagnostic testing in our attempt to understand why these little lives end so quickly, so often. I'm thankful for those months of payments because it forced me to take time to grieve instead of distracting myself immediately with more tests. They existed, it mattered, I did everything I could to keep them alive, I nurtured them to the best of my ability according to the situation we were in, and I took care of the financial responsibilities their life left behind. It may have taken place over a few short weeks but it sounds like a parental relationship to me. My responsibilities for that little life may be finished for now, but my heart will treasure each moment we had. The tears in my eyes just thinking such a thing attest to that.

Babies dont just grow in mommies' bellies, but in their hearts, and that's what matters in the end. Mommies and daddies love all their little ones, no matter how small they are, no matter how long they are around. God giveth and God taketh away. All we can do is make the most of each moment He gives.

I've felt the love of a mother six times, and am blessed to continue to feel it each day with one of those special babies who made it here to share my life with.

And so one last goodbye to you, my little one, and everything I hoped and dreamed you would be. I wished so badly to meet you, hold you, raise you. But at least I got to love you. God had other plans and I'm learning to trust Him. I may have more children, but they will never be the same as you were. That matters. You matter.

All my love. Mom.

Don't Panic

There are sudden moments where my mood can change from happy, or doing just fine, to the total opposite and I’m, very suddenly, not even close to “ok.”  Any little trigger and it just boils over.  I hadn’t been to church in three weeks because of the loss, because of work, etc.  It’s very rare for me to go that long without going to church.  I usually go every week.  For some reason this loss (much more than the others) has somehow left me more anti-social.  I’m fine talking to people online, I’m fine with people at work whom I’m just starting to get to know.  But I find myself wanting to avoid being around those I’m close to except for my husband.  I don’t exactly know why.  For some reason, this time my best healing has come through keeping myself busy and keeping to myself.  In the past I have clung to the company of close friends and family.  I’m much happier alone this time.  I worked full time this week, ran some errands, and celebrated my anniversary with my husband.  All of those things were great. 

As Sunday crept closer I started feeling this dread come over me.  I craved to go and worship and feel the Spirit.  I wanted to sing and be uplifted.  But at the same time the idea of going somewhere where everything is so positive and people are so faithful repulsed me, because it’s such a stark contrast from how I’m feeling half the time.  I didn’t want to hear about faith and trust because I already know I need to do better and for some reason it feels like that message drags me down unless I’m in the right mindset to receive it.  The other thing that worried me was seeing my friends.  I just felt like it would be awkward and I felt like I would have a breakdown at church, and that was the last thing I wanted.  I’ve been trying to deal with the sadness I’ve been feeling, but I’m still struggling with it.

In my mind’s eye, I saw this scenario where a friend who hadn’t seen me since the loss says a simple “Hi Amber! It’s good to see you, how are you doing?”  How do I answer that?  I either have to lie through my teeth with a smile and say “great!”  Or I have to say “You know, I’m hanging in there and I’m ok.”  I feel like that response would lead to either more questions, or instant sobs from me.  I don’t know why church is so much harder to go to than other places.  Maybe it’s because I normally can feel so happy there- or because my friends are genuine.  I didn’t want anyone to see me like this.

  I stayed in bed with a headache until 15 minutes before church started at 9.  I was debating up to the very last minute.  But I knew I at least needed to try to go.  You have to start somewhere.  You have to start getting back to normal.  I was extra tired because I’d worked the last three nights and knew I still had Sunday and Monday night shifts.  Getting home a little after midnight isn’t the bad part, I just haven’t been sleeping well.  I can’t ever turn my brain off after work and when I do finally fall asleep I have vivid dreams.  I wake up with headaches and feeling restless.  I’ve been struggling with heartburn too, which I don’t usually.  I wonder if that can be a result from stress or restlessness. 

But I did get out of bed 15 minutes before church, threw on a dress and boots and went.  We were a little late, so I sat out in the foyer, but when we normally would have gone to find seats during a break, I just continued to sit outside the main congregation.  It felt better to sit with just my family and hear the messages.  That way I didn’t have to see anyone or give anyone a smile.  My heart tried to be positive because there were wonderful messages of faith and happiness.  It was testimony meeting.  I just couldn’t break through the fog that felt like it was surrounding me.  Someone would talk about their new baby and that shut me down.  Someone would talk about having the faith not to be healed or have things turn out how you want and that shut me down.  I tried to focus on the Savior. I tried to tell myself that it was enough today for giving it the effort to go.  Baby steps. 

When the first meeting was over, I hurried to the classroom where I teach, to avoid seeing anyone in the halls that I would normally talk to.  I sat in the classroom and thought “This won’t be so bad.  Kevin is teaching with me, we only have to teach the kids and play with them for a couple hours, no big.  I looked at the clock and thought “The kid's other teachers or their parents will bring them in here soon.  A couple hellos are all you have to get through.”  

And suddenly, just like that, my chest felt tight.  Literally like it was seizing up.  I felt like the walls were closing in.  My emotions suddenly felt overflowing and I couldn’t keep my thoughts straight.  I told myself to calm down and tried to even out my breathing but it just sounded like hyperventilating.  The tight feeling in my chest added to the chaos of the moment, I was cold and shivering.  I looked at Kevin and said “I feel like I might be having a panic attack.” 

All I could think was “I have to get out of here before I see anyone.”  I felt like the kids would be there any second and then it would be too late.  I stumbled into the next empty room connected to our classroom, and tried to give myself a minute to calm down before I saw anyone, but the plan backfired.  I started trying to cover up the sobs coming from deep within my chest and water was pouring from my eyes.  Now there was no way I could hide it, you would be able to see it all over me that I was crying.  That I was a mess.  That just leads to more concern or questions.  I would be so embarrassed if someone saw how upset I was because I couldn't escape the situation.

I sat on the floor, giving myself one more chance to calm down.  I could hear was voices right outside the door.  Two women laughing.  One saying “Yes, my third is due anytime, my first came early etc etc.”  Nothing out of the ordinary.  Nothing wrong, nothing offensive.  But it’s just a trigger.  I knew I was done for.  It was a hard moment because a statement I said the night before was really starting to ring true.  I had admitted to Kevin about 1am, “I feel like I might need some help, but I’m not quite sure where to find it.”

 I knew I wouldn’t make it through the class at this point.  I looked desperately to my husband (as embarrassed as I was) and said “I have to get out of here.  I feel trapped.  I can’t even get to the car without people seeing me.”  Just admitting I felt trapped made my chest feel tight again.  I wanted to run.  I knew I had to hurry before the hallways filled up.  Even though I knew he wouldn’t really, I felt ashamed thinking my husband would hate me for this.  Why am I such a basket case?  Kevin acted quickly, and took me by the arm, and opened the door.  I was frantically wiping my face and digging in my purse to avoid any eye contact.  He checked the hallway and walked swiftly next to me until I came to a door leading outside.  He handed me the keys and I just ran.  

I talked myself through driving home, telling myself I needed to focus on driving and hold off on a meltdown until I was somewhere safe.  I have no idea why, but after I got home my right arm started to ache like someone had punched me in the shoulder a dozen times.  The aching started in the shoulder and went all the way through to my fingers.  I think this really may have been a physical response to what I was feeling.  I’m glad Kevin was there to cover for me, even though I was disgusted in myself for having a breakdown for no real reason.  I hope this is the last major event that I get through before I can start seeing some normalcy in myself again.  Perhaps it was just too soon.  But I tried.  I really tried.      

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When I say I don’t know where to get help, that’s not exactly true.  I have a loving family, great friends, and resources available to me.  My job offers free counseling that I can take advantage of at any time.  I have doctors and nurses I could see.  I think my problem is not knowing what kind of help I need.  Mostly I think I will just need some more time.  I’ve done counseling in the past for other things, and it helped, but maybe I’m just not ready to make the time commitment or the emotional commitment to try it again.  I have my blog as an outlet and a place for me to vent so I have that going for me.  I know that counselors can teach you coping mechanisms so if this continues I may look into that. 

I have doctors available to me.  I don’t want to start an anti-depressant.  I don’t think there’s anything wrong with them and I know they are a big help to those who need to take them.  I’m just not sure I really need one.  I’ve gotten through grief many times before without one, and I’m worried I would become numb or dependent on a drug.  The other issue is that sometimes people with MTHFR have trouble finding an antidepressant that works without the help of taking activated folate.  That folate that my body can’t process is responsible for nourishing neurotransmitters, etc.  Basically, I can feel depressed just from the lack of folate.  So maybe that's all I need, not an added drug.  I stopped taking my folate after I lost the baby because it’s very upsetting to take it still.  It’s associated with all that other stuff.  But I know I need to keep taking it for my own health. 

There is a new prescription out called Deplin.  It’s an active folate, studied for people specifically with MTHFR (so says one who works for the company).  It’s marketed as an antidepressant and is supposed to cross the blood brain barrier.  It’s also marketed to help prevent neural tube defects in pregnancy.  It’s been clinically studied, proven, all that jazz.  I’m trying to figure out if the dosing or compound is somehow far superior to over the counter active vitamins like I’ve been taking.  It’s over $400 for 90 pills of Deplin (the over the counter vitamins are like $20).  So I’m very curious what would set it apart.  I wonder if it would help me feel better, I wonder if it would work in my brain more or better.  I wouldn’t ever want to spend $400 on it, but if the insurance covered most of it, I wouldn’t be opposed to trying it, because it seems to be a clinical strength vitamin.  If is somehow worked better or stronger there is the potential there that it would help with any future pregnancy.  The trouble is I don’t know who to talk to about it.  I might email the fertility clinic and ask, because none of my regular doctors or OBs in the past really even know what MTHFR is, let alone that I’m missing an enzyme to process folate because of it, let alone a new drug that is supposed to help.  I usually pay for these doctor appointments just to be met with blank stares as I explain what it is.  They just don’t know about it. 

A nurse at work, also works for a company who studies these types of things, and really felt like this prescription is something I should look into if I can find a doctor who will work with me.  He was very professional about everything when he heard me talking to the pharmacist about active folate.  I explained my diagnosis and he was very interested.  I wondered if a strength like this would help my babies more.  I told him we’d lost our last five and wondered if this was a key part in it.  His response?  “That’s awesome, it’s like you don’t even have to use birth control.”  ARE YOU KIDDING ME?!  Of all the heartless things that have ever been said to me, that was the worst.  I wouldn’t even have told him, but it seemed to be a professional medical conversation up to that point.  I couldn’t believe he said that, in essence, “well even if you get pregnant, your baby likely won’t be born, so why worry about birth control, you won’t have another mouth to feed anyway.”  Regardless of that comment, I still want to look into Deplin.  If it would really help me stay happy more often, or feel less imbalanced.  In the meantime I know I should start on my vitamins again. 

              

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In the meantime I am still pondering on our loss.  Not just the loss of “a” baby, but the actual life that didn’t make it.  I think about all of them.  I imagine they all would have looked a little bit like Jack, but I try to push that thought out because it hurts too much. Along with the image of him being a big brother. He does ask me sometimes why there is no baby in my tummy. I wish I knew why.

I love looking at Jack. It's so incredible to see a little person who is literally half me, half my husband. A physical embodiment of our relationship and love, blessed by God. Do we ever stop to ponder on the fact that we have the ability to create a whole new human being and give life where there was none? A person, that will (God willing) outlive both his parents and still be there standing, a testament to their love and commitment to each other forever. All the love they felt for each other before couldn't imagine the love they would find for their child, that through God’s blessings, can be theirs forever.  I have had that blessing come to me, so even in my pain, I know I’m one of the lucky ones.  I saw this little reminder and bought it for myself- it makes me happy when I look at it:

Three is a hard age, but this little guy lights up my life.