Thursday, April 24, 2014

Faces of Infertility: Stephanie and Chad

In celebration of "National Infertility Awareness Week", I am featuring stories of infertility this week. These are all guest posts that I hope will put a real face on this devastating disease. Please spread the word and share these stories!


This one word can change the future for someone in a moment as they realize that the life they always pictured may never be. It is a word that no one ever wants to say out loud because there is the hope that if you don’t it may not be true. Infertility makes a person feel more alone than any other. It is a pain that is so deep and private that so many make it their quiet battle.  

This word and everything that goes with it has been both my constant sorrow and at the same time, a blessing where God has showed me himself -- something I may not have seen had I not had to take this road. This is a journey that I never imagined myself taking, one that has been filled with pain and so many tears. You always imagine that when you are ready to have a family you got pregnant.  There are no problems; why would there be? Everyone that you knew was pregnant or already had a child or two. It only seemed normal that it would be the same for you.  You get ready to join the ranks with kids too ... or not. 

Chad and I decided one very cold February afternoon that we were ready to start a family. I still remember sitting in our living room and he asked me what I thought about us starting to try and have a baby. I had been caught off guard at first because I had always been the one who wanted babies and he was the one who never seemed like he would be ready. So when he asked that question I needed a moment to let it sink in. He was really asking me this and now all of a sudden I wasn’t sure what I wanted to tell him. I knew that it was a big step in our marriage, one that would change our lives forever. The idea of finally being able to try to have a baby was so exciting.  

I told him that I was ready to start our family.  

I thought for sure that I would get pregnant right away. Both my mom and my sister had no problems and I just assumed that I would follow right behind them. But, one month lead to the next and my period kept coming. I was starting to feel a little nervous. I knew that it could take some time but how much? When was it considered past the “okay time” for getting pregnant and something that maybe I needed to start being concerned about?  What if this was more of an issue than I thought?  Was it me?  Was it Chad?  I didn’t know what to think. 

There were so many questions racing through my mind. I knew that I had horrible periods but I didn’t know if that could have anything to do with it. I pushed these fears out of my head and decided to step it up a notch. I bought an ovulation kit (I think I have spent a small fortune on these). I held my bladder for the specified 5 hours, raced home after work and did my thing on that stick. I had my ovulation cycle down to a science. I knew that when those two lines showed up it was time to make a baby.  After doing this for a few months I began to wonder if those two lines on that ovulation test were the only two lines I was ever going to see. 

After a year had gone by, Chad and I decided that maybe it was time to see a doctor. We made the appointment and met with an infertility specialist. We explained our situation to him.  He told us that there were a few simple tests that we could do to check and see how everything was. Chad got his semen tested, and they checked me to make sure that I was ovulating.  Everything came back normal.  He asked me how my periods were and I told him that they were regular, I never missed one but they were painful and very heavy. The doctor told me that he suspected that I might have Endometriosis.  This was the first time I had ever heard this word before so I had no clue what this could mean for me down the road. He said that unfortunately this was something that could not be diagnosed using normal tests; I would have to have surgery in order to confirm it. 

That scared me. I didn’t know what to think. I felt numb from all the information I had just been given.  My brain was on overload. He told me that it wasn’t something I needed to decide right now but that I needed to think about if I really wanted to know why I wasn’t getting pregnant.

I left that appointment and went back to work in a daze. He had given me some pamphlets on what he was suggesting I had and what a laparoscopy was. I set them in my drawer and tried to finish my day.

I did some research to find out a little bit about Endometriosis.  I learned that the endometrial tissue that you have inside of your uterus is also on the outside of your uterus. So, every time I got my period I would bleed in my uterus but I would also bleed on the outside of it too.  The blood has no where to go so it pools in various places like my bladder, ovaries and below my uterus in a little pocket.  It creates scar tissue as well as blood deposits on those various places. The worst part is that it releases a sort of toxin that attacks my eggs as well as the sperm trying to get to those eggs.  There is also a chance of there being microscopic disease that lines my uterus and does the same thing the visible endometriosis was doing and the worst part about it is that no one can see it so it can’t be removed.

After reading about this and talking to Chad we decided that our next step was to go ahead with the laparoscopy.  We needed to know what we were dealing with.  The surgery confirmed what we had already suspected. I had Endometriosis. They found it everywhere. Each biopsy they took came back positive for the disease. They did what they could to remove it and then they even wrapped my ovaries in a dissolvable gauze to help keep them clear for just a little bit longer.

I felt hopeful after the surgery. I really felt that maybe it would work and I would get pregnant. But, once again the months began to stretch on and nothing was happening. We went back to see a doctor again. By this point we were feeling really frustrated. We had so many questions and none of them could be answered by the doctor. I think that was one of the hardest things to realize. They are human, they don’t know everything, and they don’t have all of the answers. All they know is what worked on other women. With this knowledge, they begin various drug cocktails to see how my body would respond. I felt like I was their guinea pig.

We began taking Clomid to stimulate my ovaries to get me ready to do Intrauterine Inseminations (IUI’s). The doctor thought that it might be good to get the semen exactly where it needed to be and to get my ovaries to release more than one egg with the hope that at least one would make it down to my uterus. I was so excited to start this. It gave me new hope. I thought for sure that the first one would work and we wouldn’t have to do it anymore. 

Well, the first one didn’t work and neither did the six that followed. 

I was emotionally tired. I was tired of the let down month after month. You try to be cautiously optimistic because you don’t want to feel the pain of your hope being crushed again. But, even though you don’t want to, you still dare to hope that this could be it. You look for the signs. Maybe I felt nauseous, my breasts felt tender… I have discovered that it is so easy to find these little signs in hopes that they are real. But, in my case, it was always the same outcome. My cycle would start and with it came the tears and anger. Each time I would feel like I was done, that I couldn’t endure this pain one more time. But, after I had my time to grieve I would prepare myself to start yet another round. 

People have asked me how I kept doing this. Sometimes I have asked myself that same question. How can I keep taking the hormones and making myself feel like a human pin cushion? My bruised stomach was a constant reminder of what I had to keep doing if I wanted to get pregnant. Plus, my hormones were on overdrive. I was an emotional basket case. I didn’t even know what mood swings were normal and what were from the hormones I had to take. I could go from fine to extremely crabby in no time at all. I usually needed to warn Chad when I started the injections and oral drugs so that when I started to cry randomly or get angry for no apparent reason he would know why and not feel like I was directly angry at him.

To bring me back to answering my question, why do all of this?  The answer is simple. It is the hope that one of these times it will finally work, that one of these times it will finally be my turn. I will get the pregnancy test that says yes. That I will get to tell my husband he is going to be a father, that we will finally be the ones who get to tell all of our friends and family that we are going to have a baby. That is something that both drives me but at the same time something that I never let myself fully dream about.

I think that anyone who has struggled with or is still struggling with infertility can identify with those times when that hope of finally getting pregnant feels very out of reach. When all you can do is sob because the thought of facing one more negative test is more than you can bare. I can remember numerous times laying in Chad’s arms and sobbing because I felt like I was losing a dream, that maybe I was trying to do something that would never be. In those moments I would cry out to God and beg him to not let that be true. But, I know that no matter what I did to make it happen, God was in control.  He always has been, I just needed to realize that and give Him back the control that I was trying so hard to take.

When the IUI’s didn’t work Chad, and I decided that it was time to do Invitro Fertilization (IVF).  It was our last option and one that we prayed was it. This was a huge decision, there were so many moral and ethical factors that played into this and we wanted to make sure we did it right. The biggest decision that we had to make was how many eggs we wanted them to fertilize. We wanted to have enough if the eggs didn’t make it thru the fertilization or the embryos didn’t take in my uterus but at the same time we didn’t want to have more than we could use. How ever many they took was what we would use so the number we decided on was very important.  We also wrote a will for our embryos in the event that if something were to happen to us they would go to whom ever we appointed.

I began preparing myself for the retrieval. I took birth control to down regulate my system and then once that happened I began to give myself injections. 

The first time I began this process I discovered when it was too late, that I had done it all wrong. I had given myself double the dose over and over again. I had OD’d on the injections. I called the nurse when I realized what I had done. They told me that that was not good and to just wait on doing anything else until they had talked to the doctor. They later let me know that I would have to cancel that IVF cycle. I was devastated and so angry at myself for being so stupid. I went home feeling very discouraged. We had spent a lot of money on those medications and I had wasted them. I didn’t know if we could afford to buy them all again. God was looking out for me though. A drug rep had been at the infertility clinic and one of the nurses overheard him talking to someone and so she told him what had happened with me and he gave me some meds that were exactly the same medications I had used previously. That was so great!!  

So, after a month we were back on track again. I started the injections; One in the morning and one and night for the next few weeks. By the end of the two weeks I felt like my ovaries were going to explode.  They did and ultrasound to see how my ovaries were looking as well as a blood test to see how high my hormone levels were.  I was so excited when they told me that I would be able to do the retrieval in two days. This was finally it!  This would be the one that finally worked. 

They were able to retrieve four eggs and only three of them were viable. They fertilized three and then two days later I came back to have two of the three embryos placed in me. It was so amazing to lie on that table and watch the ultrasound screen as they placed our two babies into my uterus.  I cannot even begin to tell you how much hope I had in that moment. I was allowing my mind to think about things that I had never allowed myself to do, like buying baby clothes and a stroller, imagining what the baby room would look like and how we would tell everyone when it worked. 

For the next two weeks I had to wait. Chad would give me injections of Progesterone with a needle that was two inches long. That alone was torture but to have to wait two weeks was brutal!  I was so anxious. I had no idea what I could do to pass the time. But as time passed and I got closer to when I could test I began to realize that it didn’t work. My body began to get cramps like it usually does when my period is coming.  

The morning before I was to go in for my blood test I laid in bed and cried. I knew that the test would tell me no. That night Chad still had to give me my shot and all I wanted to do was scream. What was the point?!  I knew that we were just prolonging the inevitable. I got up the next morning and took the test; it said exactly what I knew it would. I went upstairs and crawled into bed next to Chad; I had no words and he didn’t ask. I just cried and cried. My hopes were crushed. I felt so discouraged. Nothing could have prepared me for how broken I felt. Not even the failed IUI’s could compare to what I felt then.  

I know that the biggest reason was because I saw them put two babies inside of me and for a while I was really pregnant even if it was just for a bit. I felt so angry at my disease. Why did I have to have it?  The unfairness of it all was just too much. All of my friends had been getting pregnant and having babies and I was still trying. I felt like we had come up against a huge wall. We had done everything medically possible, there was nothing left to try. The possibility that we may never be able to have our own kids was starting to become a reality.  The thought of that took my breath away. I could feel myself teetering between desperation and hopelessness.  I knew the way I was supposed to think and that was to trust God, to have faith that he was in control. But how do you do that when you don’t know for sure if what God has in store for you is the same thing you are hoping for? I knew that trusting God could mean that He might say no and that I would have to learn to let go of my dream. The very thought of that broke my heart.

Quite a few months passed where we did not try anything. We needed a break. We decided that maybe a good way to take a break and to still try to help my Endometriosis would be to go on the Depo shot.  That way it would stop my period and hopefully make the disease begin to shrink. Plus, I would get a break because I wouldn’t be bleeding or ovulating so I wouldn’t need to worry about missing an opportunity to try again.  

Of course my body did not do what it was supposed to though. They could not get the bleeding to stop and so they had to give me some added drugs to make it happen. This did the trick and for six months I was period free! What a great feeling. I really felt like I was truly able to have a break from it all. 

Once again I had begun to hope. That scared me...a lot. I found myself really finding hope in the idea that the shot was able to shrink things up and I would get pregnant. We decided to start trying again in the fall.  I stopped my shots so that my period would start but it didn’t. They put my on Prometrium to start things and that didn’t work either. They had me take it twice, still no luck. I was getting frustrated.  First when they wanted to stop my bleeding they couldn’t get it to, then when they wanted me to start bleeding they couldn’t get it started… Leave it to my body to do exactly what it wasn’t supposed to do. 

But, after a bit I finally began to have a little bit of something that could be considered a period so the doctor went with that. We did an IUI around Thanksgiving. I found myself feeling hopeful. But once again there were problems. My body responded to the Clomid very badly. I still believe to this day that the Clomid woke up my hormones. My uterus had been frozen so to speak, my hormones were almost in a state of menopause so when it was time to bring back my period I felt pain like I have never had.  

It started the weekend of Thanksgiving Day.  It was not bad at that point.  It came in cycles and each one would get a little worse.  That night it really started. The pain would come about every hour during the night and last for at least 20 minutes. I would lay there sweating and trying to breath through a pain so intense that breathing or moving to a different position wouldn’t even help alleviate. This pain would rip through me like that almost every hour on the hour for the whole weekend. I got to the point where I would dread going to sleep at night because I found myself being jolted awake with the next spasm.  And then it also began to come during the day as well. I called up my doctor and explained to him what I had been going though. He had no idea what it was. Since I had had a kidney stone at the beginning of that month he thought that it there was a possibility that it could be that. I thought that it could be a possibility but soon I decided that it was unlikely. It was my uterus.  Since I have never had a baby I really can’t say exactly that it was contractions but that is the only thing I can think of to compare it to.  I never want to do that again.  I think another good indicator was after all that pain had finally passed I got my period and it was nothing like I had ever had.  Then I knew that all that pain was in my uterus and no where else.  After that little episode I think that the doctors also realized that I am a strange case, I do not go by the books.  I tend to do exactly what most normal people wouldn’t.  I will find weird reactions to things.

After that whole ordeal I did one more IUI.  I found out on Christmas Eve morning that it did not work.  I was sitting in my chair crying.  I told Chad that I was done, I couldn’t do it anymore.  That is when Chad asked me if I was ready to look at adoption. I just cried. I knew that we had to do something, what we were currently doing was not working. 

So, once again we were moving down another path.  This one I was more hesitant to find myself being excited for.  I think that it was partly because I felt that by adopting I was letting go of my dream to have my own child.  In my head, I knew that that was not the case but my heart just wasn’t feeling it.  I began to fall into a depression.  I didn’t realize just how deep until Chad had to talk to me about it one night on our way home.  I had no joy anymore.  I never brought up adoption and didn’t want to talk about it when he did.  He asked me what it was about adoption that I had such a hard time with.  I told him that I honestly felt like I was letting go of a dream.  That by moving forward everything that I had ever hoped for would never happen.  It was a lot to grasp.  Even if it was not true I still had to come to terms with the fact that I may never be able to have our own biological child, that I would never get to see a positive pregnancy test, I would never have the feeling of a baby growing inside of me or know what it is like to tell our family and friends that we were going to have a baby.  I would never have the doctor lay our baby on me and tell me congratulations.  I wouldn’t have so many of the things that so many moms take for granted.  Just explaining that to Chad made my chest hurt so much, I could barely get the words out past the lump that had formed in my throat. The thought of having to let that go almost killed me.  I just could not come to terms with that and I could not find myself willing to accept that we were going to adopt. 

Soon after that conversation Chad’s sister told us that she would like to have our baby for us.  What a sacrifice!  At first we weren’t sure about this.  It was something that was totally different and not anything we had really ever thought about.  But, the more we thought about it the more the idea really seemed doable and exciting.  We would be able to still have our own baby but the only difference would be I wouldn’t be the one having it.  After Chad and I decided that we wanted to do this I called Candi up the next day.  I asked her if she would like to carry our child for us. I was crying as I asked her and I could hear her just take a breath in as she answered me, saying that she would be so happy to carry our baby. It was a moment that I will never forget.  She was so excited to do that for us and I found myself finding hope once again.  

We began looking into doing this at Mayo. We found that they do and we started the process. After we got about half way through we ran into some bumps. The biggest being that Mayo had not done a Gestational carrier program in a long time so it had to go through committees before we would be able to move forward.  After months of waiting to find out if this was something that we could do Chad and I met with the doctor to see what was going on. He told us that it would be a long time before we even heard anything about whether or not we could do this.  He advised that we go ahead with IVF again and then they would save the extra embryos and use them on Candi once we knew.  

I was beyond excited about this.  I didn’t think that I would get another opportunity to try and be pregnant.  I literally danced out of the doctor’s office that day. We decided that I would have another laparoscopy to get me cleaned out before we tried IVF. We wanted to make sure that we had a good shot at this working. After the surgery I had an ultrasound to see if I was ready to start the process for IVF.  They found a cyst that was 5 cm.  It was so big!!  They don’t know what would have brought it on since it was not there during the surgery.  So, needless to say, that brought the process to a screeching halt. And, once again, we were waiting. I was so frustrated! If it was not one thing it was something else. They put me on birth control for 3 weeks and told me that they would re-evaluate then to see how it looked.  I was a little nervous because it was really cutting it down to the wire.  The infertility clinic closed right before Christmas and I wanted to make sure that I was able to do IVF before that time.  Right before Thanksgiving they saw that my cyst had pretty much resolved itself and I would be able to start the shots that week.  It didn’t take long after that.  Before I knew it, it was time to retrieve the eggs. 

That morning on the way to the hospital I just prayed that God would be in control of all of this, that the amount that they were able to get would be what we were supposed to get.  I felt peace as we went in.  I was not nervous at all but very very excited.  They were only able to get 5 and out of that 5 only 4 were able to be fertilized and then only 2 were viable.  I tried not to feel discouraged about this.  It was not the number we had hoped for but at the same time I just kept telling myself that God was in control and it only took one to work.  It was going to be ok.  When I went in for the transfer it did not go as smoothly as I would have liked.  Nothing went the way it was supposed to. The medicine they had given me to make sure I was relaxed had completely worn off.  They could not get the catheter in and it was causing me so much pain that I started crying.  The doctors stopped at that moment and gave me a break.  They were going to give me sedation but I had a tiny bit of muffin for breakfast and so they couldn’t. They decided to give me some more Valium and see if that would relax me again.  It worked and so did the break.  I was able to collect myself, relax and just breathe. When the doctor finally got the catheter to where he needed it to be it felt like dejavu all over again. I was back in that moment of hope, of my dreams of being a mom coming so fast that all I could do was pray that this time was truly the one.

This time it felt even more amazing to watch them put my babies inside of me, it felt even more intense than it did last time.  The emotions I felt were deeper if that was possible.  The hope inside of me was like none I had ever had.  It was overwhelming at times and it scared me so much but I couldn’t seem to suppress it.  I felt like maybe that fact alone could be a sign that it was going to work.  Usually I have some control over my thoughts, I can stop them from getting too out of control when it comes to thinking about having a baby but this time they were running rampant in my brain.  And for once, I let them.  I wanted to hope so badly.  

When I closed my eyes I could see my babies in my mind.  I jokingly told Chad that they were my girls and even caught myself talking to them through out the day. I imagined holding them, seeing them for the first time in the hospital.  I could actually see the pregnancy test being positive and seeing us telling our family and friends that it worked, we were finally pregnant.  I truly felt like we would too.  

Those thoughts only made the next 2 weeks the longest I have ever had to go through.  The emotions that you go through those two weeks are crazy.  You go from hope to fear to excitement to dread.  I wanted those two weeks to be up so badly but at the same time I didn’t want them to end because at least right then I could pretend that I was pregnant.  I wouldn’t have to face the emotions, the reality of not being pregnant.  So, you find yourself feeling torn between these two things.  

As the two weeks came to an end I found the all too familiar feelings of my body getting ready for my period.  The morning before I was supposed to test I began to bleed.  I was beside myself.  I could not stop crying.  I tried to convince myself that the bleeding was normal, some people did that, I was too, but I could still be pregnant.  But, the bleeding became more intense, the cramps much stronger.  I knew that once again it had not worked.  I was supposed to go to my parents that day and bake cookies for Christmas.  That was the hardest thing I had to do.  I had to pretend that I was okay, that I was not bleeding and that I was not dying on the inside because, once again, it had not worked.  

The morning we were supposed to go in and take the test I just went home. I couldn’t do it.  I was devastated.  My heart was broken to the point where I thought I would never be the same.  I called the nurse and left a message stating that I had taken a test, it was negative and that I wouldn’t be coming in to have my labs drawn.  The nurse called back later that day, it was a Sunday, and she told me that she was so sorry that it didn’t work and that I didn’t need to come in that day but on Monday I did. She said that since they had put two embryos inside me they needed documentation showing that the test truly was negative.  

When I got off the phone with her I just sobbed.  It was then that the reality began to hit me.  I thought that I would be crushed under the weight of the pain.  Chad heard me get off the phone with the nurse.  He asked me what she said and when I couldn’t answer he knew that I needed him to just hold me.  He came into the room with me and just let me cry.  It was like once I started I couldn’t stop.  Wave after wave of pain just kept hitting me.  Once again I found myself so lost in despair.  I felt like God was farther away than he had ever been.  I did not feel Him.  I could not hear Him and honestly, I was so angry with Him that I wasn’t sure I wanted to.  I couldn’t understand how I could have so much hope, why the doctors were only able to get a few eggs, why we had just spent all that money on something that did not work.  Now, we were done.  We had no where to go, no money to do it again even if we wanted to and no more options of anything else.  I wanted to scream out at God.  He can perform miracles, why couldn’t He do one for me?  Why did we have to go through this month after month?  It wasn’t fair and I was so tired of it.  The good thing about God is he expects our anger. He knew that I still loved him and that the pain was so intense that I had to release it some how.  But really, what do you do when you have come to the end of your emotions?  When the thought of having to feel the pain one more day completely overwhelms you?  I had all of these thoughts and looking back on this I see God so clearly.  He was still there holding me in arms.  He was crying with me.  I still don’t understand why He didn’t allow me to be pregnant, why it was that after I had the blood test it said that I had been pregnant… The test was still negative but it was high enough indicating that it had started to take but for what ever reason just stopped, that made me feel even worse.  That was the farthest I had been in being pregnant and so to see that was devastating.  How do you respond to that?  I was at a loss.  My heart was crushed and I wasn’t sure I would ever find myself able to get out from under it. 

But as time moved forward my pain began to subside little by little.  I think that it is amazing how God places people in our lives at just the right moments when we need them.  Once again I found Chad and I talking about adoption.  He basically laid it out like this; he told me that I needed to decide if I wanted to be a parent or if I wanted to be pregnant.  He was not being insensitive; he was helping me to see what I knew I needed in order to move forward.  I want to be a mom.  I want us to be parents.  It was still hard for me because I still wanted to be pregnant but I realized that even if we began to move forward with adoption I was not closing the door to having our own.  It was still a possibility but I couldn’t keep waiting for that happen when there is a chance that it may not.

We looked into adoption. I allowed myself to be okay with it and realized that I may get pregnant some day but I may not.  I wanted to be a mom, I wanted Chad and I to be parents.  I didn’t want to lose that chance because I was waiting for something to happen that might not.  As we moved forward with the letters and approvals I began to feel as though there was something holding me back.  Not my fear or letting go or the same emotions that stopped me before.  This time I honestly felt as though God was asking us to slow down and look at things. I talked to Chad about what I was feeling and he was feeling the same thing.  We decided to put everything on hold and pray about what we were supposed to do next.  A few days later we were sitting down to eat supper and I looked at him and said that I really felt that we weren’t supposed to adopt.  I looked at him and asked if that felt okay to him.  He said yes, it did.  I still remember, in that moment a weight had been lifted off of my shoulders.  I could breathe again.  I felt a peace that I never imagined I would ever feel.  All of a sudden it was just me and Chad again, husband and wife.  No more doctor visits or calendar watching.  We could just focus on being married and what ever that may bring.  I was actually excited.  The thought of our future and being able to go and do what we wanted just thrilled me, it thrilled us.  I knew that that peace and feeling joy could only come from God.  We had prayed for a long time to do God’s will that he would make that clear.  God was faithful in showing us what it was…and for now it is to just be us, be married and love each other without the stress of trying to have a family.

When I really let myself look back on all of this, the pain, the frustrations and the tears I wouldn’t change any of it.  I would not be who I am today if I never had to go through this.  I would not have the marriage that I have; I would not have the friends that do.  I have met some wonderful people and God had opened up doors for me to be able to help others as they move down this road of infertility.  My heart aches for all the women who find themselves right where I have been and I want to do what I can to make the journey some what more bearable, to at least to help them to not feel so alone.  I don’t know where God will lead me with this, but I pray that I will hear his voice when he leads me down that path.

(Please note that all parts of this article are the opinion of the guest writer and not necessarily viewpoints that I personally share)

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