Relapse

I seriously considered not writing about this experience.  But in an effort to really make this blog part of my healing process, I think I need to put the ugly in with the good.  This whole story really caught me off guard and I want to write it carefully, because it’s a delicate thing and I don’t want to be offensive.  I learned some lessons though, and that’s what makes it important.  I went to a gender reveal party for someone very close to me, whom I love very much.  I am so thrilled about this little baby coming into the world, and all the joy this baby is bringing.  I’ve gotten to the point in my healing process where I don’t get nervous about these parties anymore; I realize that they may cause me to twinge here and there in remembrance, but I want to take part in the celebrating! I don’t want to be that person that lets their personal issues ruin a party, or be selfish enough to make something joyful all about ME, not about the baby.  I don’t want people to tip toe around me, and I don’t want to be excluded from events.  My dedication to these ideas usually helps me swallow anything difficult and have a sincerely good time! 

For some reason, this time was different and I had a “relapse” if you will, of all the progress I’ve made.  At least that’s how it felt.  The start of the party was really fun and exciting and I was having a good time.  Seeing the decorations about “welcome baby” and such made me think of the baby that I was due with in about 2.5 months from now, and that was hard, but I swallowed that feeling and looked at Jack and thought about how grateful I was, and continued to have a good time.  We started passing around ultrasound pictures and that’s when it started, this feeling of sorrow, spreading from my heart to all my limbs.  It really caught me off guard because it honestly had nothing to do with this beautiful child, and I learned that grief sometimes just has triggers.  Though I had tears behind my eyes, I wouldn’t let them come out.  That would be so selfish and rude.  So I told myself to adjust my attitude and marvel at the wonder that I was in front of me.  So everyone continued to talk about the excitement this baby would bring to the older siblings, to the family, and such.  I wholeheartedly agreed but tried not to talk too much for fear of everything spilling out. 

We all popped in the DVD of the ultrasound and that was my breaking point.  I look on the screen to see this perfect heartbeat- it was like a fairy tale.  How does this really happen?  I push down the bitter feelings that “people take this for granted”- I know that’s a reaction, I know that’s not true.  I felt like a monster- how could watching this amazing heartbeat on an innocent child bring up this poison from inside me?  That’s when I learned again- trigger.  It had nothing to do with the baby, it was just a trigger.  It was a gateway.  When I looked at that ultrasound, my mind was far away.  In my last ultrasound appointment. 

It was the middle of the night, in an emergency room.  I was alone, across the country from my husband.  I was laying on a cold bed, bleeding, having uncaring strangers shoving probes and needles in wherever they so pleased.  They were looking, hunting really, for any sign of life in me.  It was gone.  They only found remnants of what had been there.  I remember trying to watch the screen as they did the ultrasound, praying to see anything.  There was no heart beat.  There was no perfectly formed organs or movement.  That memory smells like a hospital- like latex gloves and bandaids.  I was freezing, I thought the shivering would never stop.  My back was in horrendous pain that didn’t ease up until I took some prescription pain killers hours later.  I felt disgusted with myself for having to change clothes because of the bleeding when I finally got home.  I felt condemned when I told the doctor who came into my makeshift room that this was the third time in a row, and I knew how it was going to go.  I remember him trying to be hopeful saying my HCG was just low, until I told him my previous numbers from home.  He saw how drastically it had dropped and he just shook his head.  My phone stopped working when I tried to call my husband, and ironically enough, my mom who I was visiting was with my younger brother, who had fallen and hit his head and was also in the ER.  He showed up less than an hour after I got there.  I felt so alone.  It was the ultimate feeling of loneliness.  I didn’t know the hospital staff, my mother wasn’t there, my husband wasn’t there, my baby was dead.  It was an awful night in my life.  I talked to God for a long time, and He helped take some of that loneliness away.  Eventually, my mom rushed back to my room, and my phone started working again, and I got to go home.  Things got better, but I had to learn to suppress the pain of that memory if I was ever to have a happy life again!  It was very easy to fall into depression after a third loss in a row, because it felt hopeless and I felt worthless. 

I feel that I’ve done a good job overcoming that, and that’s why I was so shocked to feel this deep pain well up inside me when I watched that video.  It was physical.  It felt like I was having a heart attack.  Kevin wasn’t there with me and I once again felt alone in a room full of people.  Later that night, when Kevin got home from work I asked him if we could just go for a drive, to get some fresh air.  That’s when the tears came.  I was so relived they did because I felt this building pressure inside of me and I didn’t know how to get relief.  I tried to tell him how I felt and what had happened but all that came out was uncontrollable sobbing.  I was so ashamed of myself.  Haven’t I made it past this point yet?  When I could start talking I spoke of my fear and anxiety that this pain will never go away.  I spoke of my fear that even if I make it to the point in a pregnancy where I can have a beautiful ultrasound of my own that I will never be able to relax and feel confident that the baby will live, and be delivered normally and healthily.  I’ve never had a late loss, but in my doctor’s appointments I’ve been forced to accept that possibility, though they assure me they are sure that risk is low.  I have a family member that had two stillborn children; she has blood issues similar to mine.  I know that possibility is there.  Will I ever enjoy being pregnant again?  Will I enjoy feeling that life, or will the anxiety take over?  I’m sure I will always enjoy having a life grow inside me, even if I can just hold onto them for a few short weeks.  But I miss the ignorance I had with my pregnancy with Jack.  Things went perfectly and I didn’t think anything of it, because that’s just how they were supposed to go.  When I found out I was pregnant, it was simple in my mind that I would deliver a baby.  I will never have that again, it will never be that simple.  That’s hard to swallow.  I talked to Kevin about lots of other things relating to losing babies or having babies in the future, and just things in our relationship that have to do with all of it. 

Even though I’m not proud of this “relapse” I had, I realize it is healthy to just let it happen when it needs to.  Let the grief come out, and take that moment, then move on and continue to be happy.  So, to you, new baby that I was blessed to see last night.  I am so thankful that you have a perfect healthy brain, and heart, and organs. You are beautiful and your coming into this world will bring so many joy.  I’m sorry that something so wonderful could take me back to a memory so horrible but I have the hope that someday I will see a miracle in my life as precious as you are.         

Happy

A few days ago I had my appointment with a specialist at a Maternal Fetal Medicine clinic in a hospital near Salt Lake.  It was a wonderful appointment and I feel like it was extremely productive in answering my questions.  The best part was- we came up with a plan. A plan! I know I still have decisions to make and research to do, but I don’t feel like I have these looming questions about what I am going to do and when.  Here is the non-medical jargon plan in a nutshell.

     1.  Go off of my hormonal birth control for now, to let everything even out and have my natural normal cycles.  This is what I wanted to do so I’m glad she agreed.

     2.  Start on the baby aspirin daily, right now.  My doctors have told me that because of my blood clotting risks I’m a candidate to take aspirin all the time, but I usually avoid medications unless it’s really necessary.  If I keep my blood thin for a few months before getting pregnant my chances are better.  The only thing I was worried about with the aspirin was that it could mess with effective implantation and give the pregnancy a bad start.  She told me that chemically that didn’t make any sense to her- and the aspirin shouldn’t affect the beginning placenta because of the way it attaches.  I’ve been able to get pregnant easily on aspirin before, and it seems like if it caused problems it would have taken me longer.  I was still on the fence then I was reading some clinical studies online and read that if anything the aspirin makes it easier to get pregnant and keep it because it increases uterine blood flow.  When I read that I felt confident that this would be a good choice for my body and not harmful to the baby.  I started on aspirin with Jack at 5 weeks 5 days and we noticed no negative results with him. So I started aspirin today.  Bring on the nosebleeds.  I’m also starting my prenatals again to feel nice and energized and healthy for a few months beforehand.

      3.  The Lovenox issue.  I mean, granted I hate the shots, but also I was wondering the effectiveness of them.  Every time I would lose a baby the OBs would say “more blood thinners! Stronger! Sooner!” But the more I learned about what’s going on inside my body and what science said, it didn’t make a whole lot of sense to me. I know that Lovenox is a miracle for many women, but I’m not sure if it makes sense for me. Talking to the doctors who knew more about it, their opinion was “since you’ve never had a blood clot, if you have a viable pregnancy the aspirin should take care of it.”  Fortunately for me the specialist agreed and shed some additional light. She said without a history of blood clots, and especially taking Lovenox in pregnancy, the drug actually acts as more of an anti-inflammatory rather than an anti-coagulant! Who knew! She said they’ve had the same anti-inflammatory results just from supplementing with progesterone! Which was my next question anyway, I really wanted to look into this supplementation.

      4.  Progesterone.  I’ve known that this helps prevent miscarriages way before I ever had one.  But they checked my levels with the last two and they were “fine.” However, I had severe back labor pains when I lost the babies and I’ve read that can be a sign of your progesterone dropping.  Without that hormone your body can’t keep the pregnancy.  The other wonderful thing about this stuff is that as far as risk versus benefit, there’s not really a risk (not when we’re talking high risk pregnancy anyway).  My question was, if it can’t hurt, might help, can I just do it?  While there’s not a huge amount of scientific proof available to say that progesterone works miracles, I’ve known people it has worked for.  You just take it during the first trimester usually.  She agreed with my logic and especially since it would act similarly to Lovenox in an anti-inflammatory way.  If it helps me keep the next baby, I’m willing to try about anything.  She wrote me a prescription and I picked it up to keep on hand.  She was amazing to do that.  Half my problem is that from the time I take a positive test to the time I lose the babies is usually 2-3 weeks.  It’s hard to get an appointment, call in, get the rx, etc.  So I just have it on hand.  That way as soon as I take a positive test, I can start supplementation the same day.  Amazing load off my mind. I was wondering about my progesterone anyway.  While it may have been fine with Jack, my body chemistry was very different back then.  My thyroid didn’t crash until I stopped breastfeeding so I can only imagine it changed all of my hormones and any balance I may have had in that area.

       5.  Tracking.  I told her that worst case scenario I was worried that if I have to lose my next baby, we wouldn’t be able to learn everything we needed to about when so that we could figure out the why.  If you do HCG readings a week apart you never quite know when the numbers drop.  Our plan is for me to call as soon as I’m pregnant- and they will do HCG blood draws every other day to check the growth.  Once I reach HCG 2000 I will have an ultrasound once a week until they see a nice strong heartbeat, at which time I can go back to my regular OB.  They feel if I get to that point everything will be fine.  What I wouldn’t give to see and hear and beautiful healthy heart on a monitor!!  They would also track my thyroid to make sure it’s not adding to the problem. 

We talked about that “luteal placenta shift” which is where I seem to lose the babies, and basically concluded if I can get past that little bump in the pregnancy that everything should do just fine.  I pray the progesterone would see me through that difficult transition to the placenta nourishing the baby and making the hormones.  I would hope the aspirin keeps the placenta healthy enough to do so.  All my lupus and APS antibodies came back negative recently so I am so thankful that is not a factor now. 

I feel happy.  I feel hopeful.  I feel validated.  I don’t feel like all is lost, I’m not despairing.  For the first time in a long time, I actually feel excited.  They told me I’ve been wise to wait to try again and now that it’s nearing the 6^th month mark, it’s fine with them for us to try again.  We are not quite there yet, but it is comforting to have the green flag from the doctor and have a plan in place.  I just need to remember to stay at peace- if it’s time, everything will be ok.  If I can just get past that point where I’ve lost them before.  I just need to trust my body can do the rest.  If I just need to sit and do nothing for the first few weeks, to mentally focus and “protect” my belly, my doctor told me that is totally ok!  They are going to monitor everything, so if I have to lose another, we should have the data to at least help us understand when.  I don’t have any huge disorders that are screaming “this is why you lost the babies” but I have enough small problems collectively that might continue to cause issues- even though they have ruled out causation for some of those problems.  I realize now that I might have losses sometimes and other times I’ll have healthy  children.  Hopefully.  And really, there is no good science for any of this.  We’re just trying our best.  I feel like I’ve done everything I can do.  The doctor complimented me on being wise in my thinking, asking good questions, and doing my research.  That helps put my mind at ease. 

Today God’s grace has filled my soul and  I feel His warmth, and that gift, at least for today, has taken my pain away and filled it with hope. 

I was so glad to have a doctor who is so experienced in this type of medicine, but also who clearly had a heart!  And actually, it was really comforting to talk to a woman, as most of my doctors have been men. 

Part of me has disassociated being pregnant with having a new baby.  So I really need to make sure I’m ready for another child, not just another pregnancy.  I need to be prepared for a miracle.  I know we need to make it a matter of prayer and really talk to the Lord about it so I know it’s the right time.  Only He knows what will happen, and only He really knows my heart and whether it is ready for either outcome.  I also want to pray about the “plan” to confirm I should feel good about every aspect. 

I can’t honestly say my fear is gone.  I’ll be in the middle of a happy thought and it creeps up and strangles it out of me but I don’t want to live in fear.  Blogging has been really healthy for me.  I’ve been considering whether or not I want to blog about my experiences if I do become pregnant sometime in the recent future.  Most of the time people wait to announce for privacy and in case of the worst- but that’s pretty much all out in the open with me!  I may write and just choose to publish those posts later depending on the outcome.  But I thank my readers because I can feel support in numbers alone and also in your comments.

I sat up in bed last night just crying- not a sad cry necessarily- just contemplating everything and all these decisions I need to make.  Tears just kept streaming down my cheeks for a long time.  I think it’s just because it's really important.  It wouldn't be so hard if it wasn't so important. Things have been working out and falling into place with all these new doctors and I have to take that as some sort of a signal that we are on the right path and doing what we are supposed to be doing now.  I need to trust that I'll know in my heart when it is time to try again, despite the crushing fear.  I have to trust that if God tells me it's time to try again if I so desire, that either the blessing of a child, or the struggle of a 4th loss will be what we need in our family at that time. I just need to trust that He knows when and why, and all I can do is all I can do.

Getting Back Into It

It’s been a long time since I’ve written.  I haven’t stopped thinking about writing, but I made a decision to really try to put everything on the shelf for a little while.  Whenever my thoughts started to get crowded about everything to do with my health, my future babies, and the babies I’ve lost, I really had to just tell myself “I’m not going to think about this right now, I need a break.”  So I took one, and it has been really healthy for me.  The issues are never far from my thoughts, but choosing to ignore them at least for a little while has helped me heal.  Now I feel stronger and more ready to face the battles ahead.  I’m not as sensitive as I was, and though the pain is still there I’ve learned to live with it in a way that still allows me to be happy.  Some may call it denial or lying to myself by trying not to ignore everything for a few months, but I think my brain and my heart just needed a break, and now I’m ready to get back into it.

Even though the stress or overwhelming feelings still creep up, and even though sadness can suddenly hit me in the middle of a normal day, I have spent fewer nights crying and more time laughing.  I’m starting to get to the point where I can genuinely talk to friends and family members who are expecting without talking myself through every sentence and trying to keep the tears from coming. I’ve learned to tell myself “It’s their time right now; your time will come again someday.  Celebrate this time of life with them, because you’ll want support when it’s your turn too, despite what they are dealing with in their lives.” 

And amazingly, the less I feel bitter, the more I feel that we are in the exact right place that we need to be in.  I’ve been learning to trust God's will above my wants, and continually remind myself that this is where He wants our family to be now, and this is the size that He wants us to stay for a while longer.  And that attitude has brought me happiness.  There are times now when I am playing with Jack that I am so overcome with joy.  He’s not a baby anymore, and so we are interacting on a whole new level.  I am getting to know him, with all of his special traits and gifts.  He is so bright, loving, funny, sweet, thoughtful, and intelligent.  I really am blessed to have this special time with him and be able to focus on his needs more than I would if I also had a small baby at this time.  Though it’s not what I wanted, I’ve really come to see it as a blessing and until the day comes that we are blessed with another child I want to enjoy the privilege I have of focusing on an only child, and everything that entails.  Parents with one child simply get to live life differently than parents with more than one, for the most part.  I’m trying to look for the good in it. For example... I wouldn’t trade being married to my husband for anything, but there are those times I remember the benefits that were around when I was single.  Before I had a family, I had to focus on my goals, my career plans, my schedule, my tastes, my budget, etc etc.  I wouldn’t go back, because being single was hard too in different ways.  But I remember the good that was there that I somewhat took for granted.  I imagine it is the same when you go from one child to two.  So I’m trying to see those benefits now. 

I’ve been looking for opportunities to share my story or help others in similar circumstances, and those moments have presented themselves.  I realize I am able to have a level of empathy for people that I would not otherwise have, and hopefully, be able to bless lives I wouldn’t otherwise be able to bless.  It’s not all sunshine and butterflies but small victories play such a huge part in the overall mental health I’ve had lately.  One experience I was grateful to have was finding out that October is National Pregnancy and Infant Loss Awareness Month.  I was able to spend some time on the internet reading some stories that women have shared, pictures of their babies who only lived a short time, stories of miscarriages, and every imaginable thing in between.  Though it is sad, I did feel empowered to belong to a group of such strong women who can go on with hope and honor the memories of their children who they carried but did not get to meet, who were born sleeping, or only lived a short while.  And on the 15^th I will be able to participate in what is called the “Wave of Light” where at 7-8pm a candle is lit for each baby that you are mourning.  Though I often try to put these experiences out of my mind, I know it is important to take time for sacred moments to remember, and to honor, the start of life that I was not able to bring into the world.  To take that hour to have a moment of silence, to remember, pray, to cry a little, then move on a little stronger.  I really appreciate that Ronald Regan took the time to bring awareness to this issue, along with awareness of those who have been through traumatic abortions.  He wanted to encourage more adoption and less abortion, as so many who have chosen abortion have suffered with that decision for years after.  Here is part of his speech from 1988:

“Each year, approximately a million pregnancies in the United States end in miscarriage, stillbirth, or the death of the newborn child. National observance of Pregnancy and Infant Loss Awareness Month, 1988, offers us the opportunity to increase our understanding of the great tragedy involved in the deaths of unborn and newborn babies. It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems... The Congress, by Senate Joint Resolution 314, has designated the month of October 1988 as ``Pregnancy and Infant Loss Awareness Month'' and authorized and requested the President to issue a proclamation in observance of this month.” –Ronald Regan

I guess we are always learning lessons as moms, which is a good thing.  I’ve been thinking about sacrifice lately.  We all know that parents sacrifice a lot for their children, and that’s what makes our love for them so strong.  This week I’ve had an experience that’s reminded me of that.  I am so blessed to stay home with Jack, we stay busy and are the “glue” of the household.  With running the errands, doing the budget, planning appointments, laundry, coloring together, playing pretend, and everything else that goes on we certainly have plenty to do.  With Kevin quitting his second job and being in the process of getting a new second job, he really needs to be available to work from 6 or 7 in the morning to 7 or 8 at night. As of now, this will most likely be his new schedule.  As every stay at home mom does, sometimes I get these cravings to go out and have success in a new way.  I know I am busy with school right now training in Medical Transcription Editing, but I also have a Bachelor’s Degree in music that I worked really hard for a long time to have.  Sometimes I want to be using that degree.  Especially when money gets tight and I think about the money I could be making as a professional.  I know it’s not much when you compare careers on the internet, but for us right now, even a little extra money helps a lot.  I had this job offer of sorts to be the music teacher to three boys who are homeschooled.  I got so excited, it was only going to be two hours a week, but at 20 bucks an hour that helps a bit.  But when we really examined the situation, the gas to get to and from Salt Lake was a lot in comparison to what I was making.  Then the big problem- if Kevin is busy from 7-7 and they live a half hour away, when was I going to teach? It didn’t make enough to where he wouldn’t need a second job.  I couldn’t take Jack with me, and I couldn’t leave him here.  Even if the students came to my house, Jack would be pulling at me the whole time and that’s not fair to the students.  Drop in daycare would cost as much as I would make.  I knew in my heart it was just going to cause us more stress than anything else.  Especially with me in school right now, it’s not really a good time for me to try and pick up new students and build any kind of a business. I don’t really teach piano and I can’t teach drum set, which is what people are mostly interested in.  We could move at any time if we hear back from the grad schools we are still applying to.  It’s a hard sacrifice sometimes not to work.  Honestly at times it sounds like a welcome break from losing my mind being “at home” all the time.  It’s not that I’m not busy now, it just is tempting to get out of the house, make a contribution, make some money, teach kids a love for music and all of those rewarding things.  I had lesson plans and fun ideas racing through my mind and I think I felt sad because I could have been really good at it.  Then I look at Jack and think- it would have been hard on him, and me.  Some dreams you just have to put on hold to live out better dreams.  And that, is what sacrifice means as a parent.  I always kind of assumed I would either be working, or stay at home and have lots of babies.  It has been an interesting situation for me to not be able to feasibly work even part time (day care preschool costs are outrageous) and stay home with one baby.  Sometimes I feel like “What am I supposed to be doing with my life?  I can’t go out and have a career.  Also I can’t have any more babies right now.”  It can be confusing but all I need to know now is that I’m Jack’s mommy and that’s enough. 

Wow this is getting long.  Sorry.  With that huge lead in, I’ve decided we want to start preparing with our doctors and have a plan for when we want to try again.  If I start working on a plan, I can remind myself of the faith and hope we have that someday it will work.  I go through physical actions to strengthen what I try to feel in my heart.  I have an apt to see a specialist on Wednesday.  They got me in with only about 6 weeks notice, so that is pretty impressive for this area of medicine.  He specializes in pregnancy loss and blood diseases, so I pray that this is the right doctor for us.

Before I could go to the specialist, I knew I needed to establish a regular OB to work with.  I searched around on the internet and found a clinic pretty close that I felt good about.  I had an apt with my new doctor a few weeks ago.  I was just planning on going in for a quick thyroid check, to make sure the new dosage is working.  I was going to briefly tell him my history just so he knew the situation and basically tell him, I’ll meet with the specialist and let you know if I need anything.  I was so wrong about this appointment, in a very good way!  Turns out he wanted to know a lot about my miscarriages.  You know how sometimes we see tender mercies from the Lord plain as day right when they happen?  That’s what happened here.  He explained to me that his wife is Protein S deficient (causes blood clotting problems similar to what I have experienced).  She also has had three miscarriages, and she experienced a 28 weeks loss on top of that.  I hope I never have to have that horrible experience.  As if that wasn’t strange enough that they’ve had the same situation, when I told him I have the rarer type of MTHFR, he told me he has that too!  He was able to explain more about it to me.  I felt so loved by God to find this doctor who has dealt with the same health problems and losses as us in his own family.  I take his opinion very seriously because he is telling me about his own children.  They have had losses and they have also had more children.  She actually is pregnant right now.  His wife has done a combination of aspirin and lovenox injections just like me.  He hates the shots as much as me, what?! This opinion is so different from any of my other doctors!  He doesn’t see how they are necessary considering my medical history.  I won’t go into all the details, but he just thinks that if the pregnancy is viable then aspirin will suffice.  The baby his wife delivered when she was on Lovenox survived, but he was early and very small (problems with intrauterine growth restriction) and there were complications with the placenta.  Scary shots.  That’s kind of how I felt all along.  And I often thought about how Jack was fine when I just took aspirin.  He talked about more details (which I won’t bore you with) about why he feels that way.  I felt very validated in my opinions by him.  I felt less afraid to try again just using aspirin, and not as guilty.  It was hard for me to distinguish whether I felt bad about doing the shots just because they are horribly painful or if they actually weren’t good for me.  We talked about genetic testing a little, but we aren’t too interested in that at this moment because most likely it won’t bring any helpful news, it’s insanely expensive, and wouldn’t probably change a plan of action anyway.  We talked about progesterone supplementation and a few other things.  He told me which questions to take to my specialist.  Here’s the next amazing thing- his wife is seeing the same specialist as me.  Validated.  I think I found the right doctor! I don’t know when we will decide to try for another baby, our life is kind of in limbo at the moment and I have to take that into consideration despite the difficulty I feel in waiting.  I try to find excitement in getting as healthy as I can and getting as much information as I can so that next time, we can be totally ready.  It will have been at least 6 months since the last miscarriage, and most likely at least 8 before we decide to try again, and I pray that my body will have healed and recovered much better as opposed to the 2-3 months in between the other pregnancies. 

Unfortunately the tests my new OB did came back to show that my Protein S and C are low (we are not sure if that means I am technically deficient yet or not).  So now not only do I have two things in my blood that increase clotting risk; we know that my body’s natural defense against blood clots isn’t working very well. So, double whammy there.  What I hope for at this time is healthy children in the future, while accepting that I will probably experience more losses as well in between those blessings.  I look forward to my specialist appointment and I hope I can feel the spirit as he talks to us so that I can know what is right for our family now.