Surgery Bound!

A quick update on what’s going on with us.  We were able to get in to see the urologist who specialized in male infertility today.  I was very anxious for this appointment and hoped it would bring us some more answers as to why Kevin has such a high level of DNA fragmentation and oxidative stress- which may be adding to the reasons we keep miscarrying.  This doctor is supposed to be top notch in this area, and I’ve heard good reviews about him from many people. 

I was most afraid of him saying nothing was wrong.  Fortunately, he did find a Grade I varicocele when examining Kevin.  Grade I means that it is small- not yet visible just by looking.  However, they typically don’t resolve themselves and continue to slowly grow.  Even though it’s small, it is a big possibility that the varicocele is causing the fragmentation and oxidation.  Because of our history and meeting certain specifications, Kevin will be undergoing a varicocelectomy to remove it.  I'll spare you and avoid posting any pictures of the surgery ;)  After three months recovery time we will retest his fragmentation rate and hope against hope that it has resolved the problem.  If the fragmentation rate drops significantly, we will be able to try for a baby on our own again.  There is very good scientific data backing this up.  Couples who suffered from repeated pregnancy loss had a much greater chance of carrying a child full term after a varicocelectomy.  We wonder if perhaps Kevin hadn’t started to develop this varicocele when Jack was conceived.

 

There is a chance that the surgery won’t correct the problem.  If that is the case our only option left will be IVF.  Doing IVF can improve our chances, even with DNA fragmentation, because the embryos are monitored for proper growth (and sometimes tested for viable DNA) before ever being inserted into the uterus.  Also, doctors are careful with the quality of sperm they use to fertilize the eggs.  It is hard for me to wrap my mind around undergoing such a difficult procedure and paying 20,000 dollars to do so, when we have conceived seven times on our own.  I think of all the dozens of injections and the egg harvesting and my blood risks with multiples, etc.  I think of some of the ethical issues that may come up with “leftover babies” and all that other complicated stuff with embryo adoption.  It gets overwhelming quickly- but we will cross that bridge when we get there.  IVF is not a possibility for us at this time, so we will start with the conservative approach and see if the surgery corrects the problem.  If the varicocele is really the biggest issue, maybe we could have many more children without medical intervention (not that I’m getting my hopes up).

All of that being said, the surgery is 3800 dollars and nothing is covered by insurance.  Between the two of us we’re already paying between 200-300 dollars a month for medications and supplements.  I don’t have that kind of disposable income… But I have faith it will work out somehow.  I can’t imagine waiting a year and a half until Kevin is a practicing DPT to pay for this surgery…and just letting this thing grow inside him in the meantime.  We will try our best and I feel the Lord will help us a little at a time to pay for the help we need.

If all goes well we would be able to try again by the start of 2016.  I’m hoping to have another baby when Jack is 5…but that would be best case scenario.  He may be older by the time another miracle comes our way.  It’s hard to deal with an age gap for me emotionally because it’s not what I wanted for my children.  It gets harder every birthday and every month that you’re still not pregnant.  Every loss you think of the recovery time and trying again, and then that ten months it takes to have a baby.  But- God knows better than me, and long term it will be ok.  Our family may not be what we had in mind, but it will still be our family. 

I’m excited to finally have a more tangible problem with a straight forward solution.  Although, I have been giving Kevin a hard time because he gets to be asleep during the procedure and then go home on pain meds.  I think of all the painful procedures I’ve been through since we first got pregnant with Jack and I think “Are you kidding me!? You get to be asleep!”  haha.  I mean I’m happy for his sake, but man…all the injections, even the ones straight into the lady parts, the incisions in my arm, the daily shots in the belly, the pain of miscarrying, or even hearing “try to breathe through the pain of this cervical clamp.” And they put the men out. Hahaha- that’s why women are mothers right? J

We still don’t know how much of a contributor I am to the losses for sure.  So even if we can fix the fragmentation rate we aren’t positive of my ability to carry.  It’s a scary thing.  However, I carried Jack full term so I feel that it’s possible if the baby has healthy DNA.  We will be holding our breath for 9 months but I still think some hope is there.  We are skeptical naturally after going through six losses in a row, but we are trying to pull some hope out of our hearts that have been hardened a bit. 

We have some pre-op labs to do and such, and the surgery will probably be scheduled for late July or sometime in August.  Sometime between now and then I’d better figure out a way to pay for it…Perhaps we'll start a fundraiser called "Aw nuts, his nuts are broken" or "testicle festival" (his idea).

All in all. I’m just so glad that this is what I thought was happening, and then he actually has a varicocele.  Yay for not being crazy.

Thanks for all your love and support!!

Healing, Hashimoto's, and Getting Help

“Beneath the foulest mother's curse

No child could ever thrive:

A mother is a mother still,

The holiest thing alive.”

-Samuel Taylor Coleridge

It’s been a few months since I’ve written, but I’m happy to say life is getting a little better.  It’s been a rough process recovering from loss #6, but I think I’m well on my way to being as well as I can be.  I have been blessed with everything I need to keep me going and find as much happiness as is available to me.  Some of this writing sounds pretty sad, but it got better as I got some help and it’s turned out ok.

Healing started with getting an IUD placed.  I wanted the IUD because I am so done with losses.  I never want to have another miscarriage.  I want to be done trying for a baby until we have a large reason to believe our next child will live.

I was trying to settle into the idea of inhibiting my fertility temporarily, and then my sweet little nephew was born not even 48 hours after our loss.  Fortunately, there is always a great deal of joy when a new person joins your family, and it swallows the jealousy for the most part.  I instantly loved him with my whole heart.  Yet, seeing such a precious child amplified my grief and I was very aware of my not-yet-all-the-way-empty womb.  It’s not an easy thing to walk into a maternity ward when your own pregnancy has just ended (but it was better once I was in my sister’s room).  It made it very difficult to follow through with the IUD placement, but I still knew it was the right thing to do long term. 

So I geared myself up for the IUD consultation.  It was a bit of a rough day.  Sitting in the waiting room of an OB office is a small form of torture.  Other moms sitting next to you munching on crackers, complaining of how sick and tired they are, and asking you how far along you are.  There are newborn pictures all over the wall and pretty much everything around you seems to be a small trigger saying “Hey, remember how your baby is dead?  Remember how they stopped growing and you’ll never get to have that ultrasound apt with them?”  Once I was in the patient room I could hear nurses whispering outside the door, "Infertility patient but needs an IUD placed? what? Oh well she gets pregnant but she's lost the last 6."  They decided to place the IUD the same day, and made me take a pregnancy test to confirm in the office.  The girl came back beaming “Ok it was negative- so the hCG is all gone and the pregnancy is totally over!  We can place the IUD!”  *thank you for that…this is actually the last thing in the world that I want to do…*

So during the procedure, as I’m trying to breathe through the pain of the cervical clamp, the doctor says “Oh good!  Your cervix is still a little dilated since you just had your baby…I mean, passed everything.” Really?  Do people even know the hurt they can cause? 

Anyway, I got through it and drove myself home and pretty much went  to bed for the rest of the day.  Fortunately the IUD has worked out well and hasn’t been causing me any lasting pain, and it’s non hormonal so it’s safe for my blood.  It’s the best case scenario for our current situation.

I bought myself a little necklace to wear as a reminder to myself of those babies I had lost, and to keep hope for the future. It reminds me that I haven’t given up despite having to take more drastic measures to avoid pregnancy at this time.  I like to wear it on days that I’m feeling extra sad or know I might encounter a difficult situation.  It sounds funny but I feel like wearing it gives me a little strength just knowing they aren’t forgotten.  I'm still their mom.

I’ve been looking forward to Kevin’s urology appointment- trying to hold on to the hope that they might find a cause for the DNA fragmentation, and even more that maybe they could do something to repair it.  How wonderful would that be?  Mostly I’m relieved that from now on, if we think we’ve solved the problem, we can just get Kevin tested again to confirm success.  No more “go ahead and get pregnant and see if the baby lives” kind of confirmation.  Even if that part takes years- it’s better than enduring more losses.  I am most nervous to hear a doctor say “We don’t know why and we don’t know how to fix it.”  That would be most devastating.

I wrote an email to my nurse and asked her if we could do some more thyroid testing.  I started to lose such a crazy amount of hair that I wondered if I was getting chemo and just didn’t know it.  I had tested positive for low tider ANAs a few years ago but the doctors never really tried to confirm a reason why.  I always assumed I had autoimmune troubles with my thyroid.  On days where I felt really thyroid sick I was miserable.  I explained to my nurse, “I'm freezing and shivering all day, I cry easily and feel so sad even about the smallest things.  My hair has been falling out to the point where it's nearly impossible to wear it down because it just covers my clothes.  It never stops coming out in clumps when I shower.  I just have these breakdowns feeling like the rest of my life I'm going to be freezing and sad and overweight and lose all my babies because I can't get my thyroid to function and stop attacking itself.”  Being cold doesn't sound like too rough of a symptom, but it starts to get to you after a while.  Like try standing outside without a coat for 20 minutes in 30 degree weather and see if you can stay in a good mood.  Focusing becomes very difficult, especially at work or in class.

So we did a new thyroid panel and sure enough- Hashimoto's Thyroiditis.  It’s not really a surprise.  My mom and grandmother have it.  I’m sure it’s only a matter of time before my little sister has it (sorry Mads).  But I was frustrated to have my suspicions confirmed.  Hashimoto's or Graves disease can cause miscarriage.  Normal range for antibodies not indicating an auto immune disease are 0-3.9, mine was at 57.5.  So it appears that I have been dealing with more than just hypothyroidism, but a “suicidal thyroid” as I call it- which guess what, is associated with miscarriage.  I swear if we get one more risk factor for miscarriage I might lose my mind.  I tried to list all our risks, even just to keep any new doctors in the loop.

Leiden Factor V (blood clotting)

MTHFR (folate problems, blood clotting, and lots of other “associated stuff”)

Low Protein C and Protein S (blood clotting)

Hashimoto’s Thyroiditis/Hypothyroidism  (I won’t list all the things this crappy disease does to the body, but suffice it to say that it is associated with miscarriage)

High level of DNA fragmentation in the sperm (infertility, recurrent pregnancy loss).

And we still need to get karyotyping of our chromosomes done for both of us.  They have to rule out that we don’t have Chromosomal Balanced Translocation.  That’s another explanation.  I will be so relieved if our chromosomes come back normal (please oh please oh please.)

I thought I would feel relief after getting the IUD placed. But I didn't.  I kept waiting for the settling feeling to come.  I know we can't get pregnant for a while.  Not until we figure everything out.  We need a break.  So why can't I settle into the idea of my life with Jack getting older and no other children coming?  I feel so weighed down with sadness.  Mourning our loss and trying to accept that the odds for the future are not in our favor.  I think I'm really starting to believe it might not happen again.  I think peace about the situation will come in time.  I'm just not there yet.  Even considering adoption is a headache.  So many factors, so much money, and so many reasons that it’s not a possibility for us at this time in our life.  I try to reassure myself  "We're not having more kids right now.  That's ok.  There are lots of other good goals in your life to focus on.  You are still young.  Even if it takes years and years more, either to give birth again or adopt, it will be ok.  The age gap will be ok.  Your heart will be full again and this empty feeling won't consume you in the years to come."

That dumb doctor that placed the IUD put a lot of doubt in my mind. Basically even if we had the money and resources to do IVF with ICSI and did embryo testing to see if it's viable- there is no guarantee that I could carry the baby.  She didn’t seem convinced I could carry to term. 

I kept telling myself- I have to start trying to get better.  For my sake and for my family's.  I missed a few doses of Deplin after the miscarriage and I felt that depression hit hard.  One night, all at once, I was overcome by my grief and anguish and my exhaustion.  I was so devastated to know that the auto immune problem was real, and I was angry.  Why do I have to feel so thyroid sick and exhausted all the time?  It makes simple daily tasks feel so difficult and it makes it so hard to lose weight, so hard to feel good about myself.  I feel so lonely in my situation sometimes

In that moment where I felt overwhelmed, I literally thought my heart would break.  I was going to die in that moment, right there sobbing and shaking on the floor from a broken heart.  Not just about babies, but about my life.  I want to feel healthy.  I don't want to dread going to church or going out in public.  I want to feel more stable, I want to have peace.  I can make millions of to do lists and goals but how can I reach them when I feel so alone and devastated.

I do believe things will get better.  I plan on writing about them as they do.  I need time to heal.  Time to get healthy and get my health problems under better control.  Time to process 6 losses within less than 3 years.  Time to be at peace and understanding with my situation and find acceptance.  Time to develop faith.  I feel like I have gone backwards sometimes when I dread going to church and avoid praying in general.  My heart just feels too broken to open it up to pray and believe- it's easier to feel hardened and angry.  But deep down I know that doesn't do any good.  That's not what I want in the end.

Perhaps I needed to hit rock bottom before I was ready to rebuild.  Well now I know this is where we have to start.  This year can still be a year of progression and wonderful memories.  Maybe I will be less "thyroid sick" and find better treatment.  Stay on folate therapy and feel like a person again.   I can lose weight, and find meaning in my career that has shifted drastically toward healthcare.  I can continue to develop my musicianship wherever it is allowed for in my life.  We can find doctors to help Kevin with his health.  I can be a daughter, sister, wife, mother, aunt, and every other title that means so much to me within my family.  I can build my relationship with God and learn to trust Him so much more than I do now.  My heart is broken and hopefully ready to be taught.  I try not to be just pessimistic.  It's hard coming out of another loss and feeling sick, but I want to be happy and live life a piece at a time. 

After all of these breakdowns I started coming to the realization that I might need to get some real help. 

My mom called me to try and convince me to get some extra help.  She pointed out all the things about me my whole life from the OCD tendencies (there are a couple real ones) and my driven attitude to fix things, the constant feeing of fight or flight, intensity and breakdowns, lack of energy, slow metabolism.  She told me she didn't want me to live with this high level of anxiety anymore, or depression, or feeling of general “crumminess.”  In my gene pool there are many people with other associated problems: GI problems, trouble sleeping, MTHFR, neurological problems, turrets, etc.  There is a lot of anxiety in the young children in the 3rd generation.  I wasn’t interested at all in medication, but I trust my mother because I know she has my best interests in mind.  

The health food side of me was somewhat afraid of anti-depressant medication because I do believe that many problems can be managed with a healthy lifestyle and without drugs.  I don't think all of my type A personality traits boil down to anxiety, but I know some of them probably do.  But I decided she was right and there was a line to be drawn.  I shouldn’t dread waking up in the morning and spend my time writing list after list.  My mom brought up my high school days where I would write in my journal 3-4 hours a day- two lines of print per line on the paper.  She said I can't even see past it, but I don't need to be living with that level of anxiety.  She wants me to be able to be happier despite any deficiencies (serotonin or otherwise) and not miss out on this time in my life.  I should be able to breathe easier.  I shouldn't get down on myself so often that I always feel inadequate.  If I did take something to try and help balance- I wouldn't take it during the next pregnancy, so I hope I wouldn't be dependent.  I wouldn't take it breastfeeding either, if I could get that far.  But breastfeeding gives such a great oxytocin boost anyway right?  I felt great when I breastfed.  This was a prayerful decision.  I was very afraid of side effects and dependency.

I shouldn't want to stay in bed all the time.  Or have anxiety about needing to go to the grocery store the next day,  Or be in the vicious cycle of stress to get up, anxiety even about getting dressed, about going to work, about trying to sleep, about trying to get up, etc etc.  Activities of daily living shouldn't be stressful.  Ask my husband, I do even get anxiety about trying to figure out what to eat sometimes.  I'll cry over it, even though I know how ridiculous that is.  My other health problems don’t help the situation.  The more I read about it the more I realized this may be a reality for me.  I read that in depression, the limbic system sends an emotional signal that is inappropriate, so like:

Sad signal when there’s nothing to be sad about

Signal to stay awake when we’re tired

Guilty signal when we’ve done nothing wrong

Feel really guilty over something very small

Fear signal when there’s nothing to be afraid of.

This can distort reality as most people will try to attach these emotions to what is going on in their life which gives false perceptions about reality.

I’ve felt like a hypochondriac for a long time, but I think all of this may actually be related.  Hypothyroidism and chronic pain (like my back) are also known causes and contributers.  My sleep, appetite, energy have all been bad lately.

I decided I want to laugh more at home and be happy for my son.  I feel like I'm usually not pleasant around him unless I fake it.  Fortunately I don't struggle with thoughts of hurting myself.  That's only happened once or twice in my life during bad panic attacks. I think the hardest part is admitting "I might have a problem."  I just didn’t want to be dependent on medication by my mid 20s for chronic problems. 

I'm learning that it's ok to be treated with medicine.  For my thyroid, for my chronic back pain, for a folate disorder, for GI problems, for fertility, maybe even for anxiety and depression.  It's still taking care of myself and trying to be responsible for my health.  I need to be more regulated.

I finally had the thought, “I want to be able to take Jack outside and not be exhausted to the point of tears just thinking about it.”  That’s when I decided to go to the doctor.

The doctor started me on a low dose of Zoloft.  It was a rough appointment to get through (especially because I work with the doctor) but I wanted to at least try it.  The first few weeks I didn’t feel any different really.  I thought it must all be placebo for people.  But now that it’s been a bit longer, I am really starting to feel, better.  I have much more stable moods, I get better sleep.  I am able to handle lots of things going on without having total meltdowns.  My chronic back pain has decreased immensely (even though I don’t really understand how).  I have enough energy and confidence that I’ve been able to work on eating healthier and being more active. I’ve worked hard at it the past two weeks and I’ve lost five pounds!  I feel like everything is stabilizing a bit more.  It is a wonderful feeling.  Now I don’t mind being on some medicine because I have more better days.  I still have hard days too, everyone does, but I’m having MORE better days.  I’ve been able to take Jack out for more activities, and we’re having more fun together.  I really only share this because I know I have some readers out there with similar problems, and even though I’m early in this journey, I’ve learned that it’s ok to get help!  It’s ok to be happy!

I took 20 days straight without a day off to do training and to get my CNA.  I’m just waiting to do my state boards at this point.  I’m happy to put my energy towards something useful and it is a good distraction.  I loved learning how to be of more help to our patients in the hospital.  I've learned a lot through my CNA class.  I don't like the reputation it seems to have of being a low class or "gross" job. It is hard work, and not glamorous, but I really feel like it is a sacred calling. To care for a human being at their most vulnerable, or most miserable, or at the end of their life is something that should be respected. The job should be carried out with kindness and compassion. It is so sad to witness any abuse, neglect, or anger toward those in need. Treat people like people and be thankful that your occupation can include so much service to others every day.

Mother’s day is coming up, so I’m bracing myself for that.  It’s a bit of a hard day.  I pretty much don’t go to church on mother’s day, just on principle.  Haha, ok it’s not really on principle, but the past two years church on mother’s day has either caused me to have a panic attack right before or right after church, or I found myself trying to choke down one right in the middle of a meeting.  It’s one day a year that I just give myself to stay home and ponder everything I need to.  I feel like it’s ok to stay home during the meetings and pray and take the time I need to mourn.  Take time to be thankful for Jack the way I should be.  And to be thankful for my own mother. 

A happy mother’s day to all of you out there- whether your babies are here with you or not, “A mother is a mother still, the holiest thing alive.” <3

Picture with my sweet nephew Holden.  I long to be a mommy again, but being an auntie is pretty great!  Thankful for these little ones in my family.