Tuesday, March 3, 2015

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 [35].

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 11th 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.