Thursday, April 23, 2015

NIAW "You Are Not Alone" - J's Story

***April 19-25, 2015 is National Infertility Awareness Week and the theme this year is "You Are Not Alone". I am taking part by sharing stories from women that I personally know who have experienced infertility first hand. Did you know that 1 in 6 couples experience some form of infertility? Someone you know is probably struggling with infertility and you may or may not even know, since it is often a taboo subject. Help break the silence and raise awareness by sharing these posts on social media or with friends and family. For more information about NIAW, please click here. This post is the fourth in my 2015 NIAW "You Are Not Alone" series. To see more stories, scroll to the bottom of this page for links.*** 


This is really scary for me…. Not just because I’ve never shared my story like this before (I haven’t) but because of the dark and grief-ridden place this sharing takes me to… the darkest, most horrible, tear filled places of my life. There were also the most depressingly LONELY places… so that’s why I’m sucking it up – typing through the tears and sharing. Because infertility and loss is hard enough without feeling alone; without thinking like nobody understands, without fearing that you’re crazy for how you feel. If my sharing helps one woman to not feel alone in her struggle, to know she’s not insane and what she feels is NORMAL or if it helps one person be more understanding and sympathetic and supportive for a family struggling with infertility or loss…then I’ve accomplished what I set out to accomplish with this writing.  

Before I proceed – I want to warn the readers that my story contains many many possible emotional triggers and I do also talk about successful pregnancy and babies. 

My husband “E” and I married five years ago. We’d dated for over 4 years and were honestly happy with ‘living in sin’ but we wanted to have children. We felt getting married made the most sense and was easier when you’re going to raise a family. So we got married, went on a month long honeymoon, and then got off birth control to begin trying to have a baby. 

We were so READY for a baby. We had been together a long time, we had a house, both cars were paid off, we had excellent jobs and health benefits – we were at the perfect spot in life to get pregnant. I felt like this thought was proven correct when we got pregnant the first month. Staring at the two lines on a pee stick, we hugged and kissed each other. We were going to be parents come September!  God, how na├»ve we were. Meet the soul mate, buy a house, get married, have one last party and have a baby – picture perfect and everything was going according to plan….  Until it wasn’t. I was blissfully picking out names, thinking about how to decorate the nursery, and moaning about how I wasn’t going to fit into my pants when my world started to crumble. I was away from home on a work trip when I started bleeding. I spent the night in the bathroom, tears streaming down my face, as I shook with fear.  The next day, doctors confirmed the worst – We had lost our baby at 5 weeks. 

I felt stunned; I went through the next couple weeks like a sleepwalker. I just kept going over and over in my mind what happened, trying to figure out why. I rehashed the last day of pregnancy and analyzed every little thing I did. I was on my feet a lot that day – was that it? I had drank a diet coke – had the caffeine caused my miscarriage? I took a bath the night before – had it been too hot? E tried to reassure me. This happens sometimes. It is not uncommon. We would be fine the next time. Since we’d gotten pregnant so easily the first time, we would be just fine. And I allowed myself to be soothed. My mom had had a miscarriage before having me but then all was great. Nothing to worry about. We’d try again and this time, it would be perfect. 

We started trying again in February/March and our second Positive pregnancy test came at the end of April.  But this time, it felt so different. This time, I was worried. I couldn’t concentrate on anything but whether it was going to be okay this time. I checked my underwear for blood about 20 times a day. To reassure me, the OB ran betas. Unfortunately, this had the opposite effect from curbing my anxiety. The betas were low and so was my progesterone. The doc put me on a progesterone supplement but my fear was growing. We went through two weeks of “limbo” with slow rising numbers and a couple reassuring ultrasounds but I had this terrible feeling of dread. That dread was proven to be foresight when our 8 week ultrasound showed we’d lost our January snowflake. 

During this time, when I'm still bleeding from the miscarriage... still grieving... still feeling like I’m a failure; my cousin gives birth 2 weeks early.  It is a stab in the heart. I remember sitting there and wishing I could be happy for her but I really couldn’t. I felt like a horrible person but I was just really hating the world... and her. My whole extended family (only my parents knew about our losses) is calling me, excited to share the news and tell me how much the baby weighs and everything. And I just want to scream "leave me the Hell alone! I don't care about her or her baby, I don't want to hear it...I hate you and your happiness". I just feel like curling up in a ball and bawling my eyes out. It’s just so hard to be literally in the midst of miscarrying my baby and listening to someone else celebrating the birth of theirs….and it made me mad. At them, at her, at her child, at my family, at God, at the world, at myself. How could this happen again? What was I doing wrong? 

We insisted on running tests following this loss. We did some blood work and a HSG scan to see if there's anything abnormal. The results were somewhat inconclusive. I had some elevated numbers for blood clotting but nothing terrible. However, my OB decided on daily doses of baby aspirin, just to bring those numbers more into the normal range. So that was the plan… I tried to feel reassured, I tried to be positive, and I tried to listen to E when he said that next time would be different. That we’d found and solved the problem… but the idea of trying to conceive again TERRIFIED me. 

But I still did it; although by this point – trying to conceive was like a job. A duty we had to fulfill. We went through the motions, we had sex when we were ‘supposed’ to but all the joy, love, and fun were gone. Sucked out by grief and loss and fear. Many times, E had performance issues because of the ‘pressure’ we both felt. It wasn’t making love anymore – it was having intercourse so we could get pregnant. We never even really talked about it; I think we were both embarrassed to admit how little we enjoyed being intimate anymore.  

And our love life wasn’t the only thing suffering. My work and social life had taken a huge nose dive in productivity and enjoyment. But I couldn’t stand to see pregnant women, babies would cause me to burst into tears, I hated parents. I had to turn off commercials because diaper ads would cause me to implode. I remember a conference call…it is just after my first due date. If my first pregnancy went to term, I would be cuddling a newborn. But I’m not…and one of the other state workers is on the call. She is just back from maternity leave after having a baby in July. And she is feeding him while she is on the conference call! So I'm stuck listening to him coo and and burble over the phone. She is making comments about how her son is a noisy eater and that she's sorry that we can't see him because he's "pretty adorable". Everyone is talking about the baby on the call. I muted the call because I am crying so hard that I can barely breathe. I didn't trust myself to talk. All I can think is this should be me. I should be feeding my week-old baby right now.  Instead I sat here with empty arms and pain and grief filling my heart.  

But the lackluster lovemaking does its job; so to speak; and at the end of September – we get another positive pregnancy test. Unfortunately, I know all too well now that two pink lines does not mean a baby in 9 months. I don’t even really bond with my pregnancy or baby this time; I can’t. I can’t open my heart to loss again. Neither E nor I tell our parents we’re pregnant, we don’t even talk about it with each other. We just go through the motions and wait for something to give us hope and reassurance that this time would be it. 

That hope comes with our 6 week ultrasound when the ultrasound picks up a beautiful little heartbeat. 127bpm and it sounds amazing. E and I cry and hug and finally get excited. Our little June Bug was doing so well! We set up an ultrasound for the next week and walk out of the office on cloud 9. I tell my parents, he tells his parents. We begin to look at the empty room in a new light ‘this will be the nursery’. But then our 9 week appointment… the OB is going to try a Doppler, even though it is early. I remember him moving the Doppler all over – trying to find a heartbeat…and failing. But no worries, the OB says – it’s still very early. We will just do a quick ultrasound. The ultrasound machine is on and I’m chatting with DH about how big he thinks the baby will be now when I realize that I’m not hearing anything… “Where’s the heartbeat?” I ask. Silence…and then these horrible words rip open my heart “I’m so sorry, there isn’t one. The baby is gone.” Everything is very hazy after that, I remember screaming. I remember crying and I remember the silence of the heart monitor and the doctor but that’s about it.  I don’t remember even getting home. 

This loss was just so much harder than the previous two. I didn’t go to work for almost two weeks. I was bawling 10 times a day... I’d let myself get my hopes up after seeing the heartbeat and the letdown was so much tougher....we had never seen a heartbeat with the previous two losses so I’d let myself get all jazzed up that we had the solution - the baby aspirin was my miracle drug. But no such luck. I started dreading the holidays. Thanksgiving was when we were supposed to tell the whole family and now I had to just sit there and think about how happy the day was SUPPOSED to be. I had to put away an entire box of Christmas gifts... I'm the type that starts Christmas shopping in like May so I had a bunch of "Grandma" and "Great Grandma" and "Daddy to Be" gifts. And now they are stuck away in the closet of the room that was SUPPOSED to be the nursery... I kept the door to the room shut. I couldn’t even think about it. 

At this point, I had lost my hope. E tried to help; he tried to be very supportive and kind. He is the best hubby in the world but I felt like he can't grasp the depth of this pain. The doctor kept saying that "next time" they will try a more powerful blood thinner and that "next time" they will start the progesterone earlier.  Next time... next time... next time - it made me want to SCREAM. For the doctor - it is easy "next time" and try try again. For me.... it wasn’t close to that simple. I just felt like trying again is pointless.... that I was setting myself up for another loss and more pain and grief. I was ready to just give up. 

We had a D&C done, to try and determine cause of death. But I didn’t hold out any hope that this would offer the solution. However, I was wrong. The results showed that the baby had unbalanced chromosomes. The suspicion was that there may be a chromosome issue and so a full genetic panel was done on me and E. In November, the results showed I had a balanced chromosomal translocation. Basically, I have all the same chromosomes as everyone – but two of them have switched places. My translocation was balanced (in that the same genetic material was ‘swapped’ evenly between my chromosomes). I have no missing genetic material but when the chromosomes divide to make the egg, it gets too much or too little of a chromosome and the result is a chromosomal imbalance.

I thought I would be relieved to have answers, to finally know WHY this was happening. But I wasn’t…  I was worried and guilty. The guilt was the worst part. This was MY fault. I had the screwed up body, I was why E wasn’t holding a baby in his arms. I couldn’t even look at myself in the mirror. I hated my body, I hated me. 

We were referred to an RE at this point. We were high risk and needed to be managed by a specialist. The nearest RE was 100 miles away. But honestly I would have driven twice that to be a patient with Dr. S. She is the most wonderful, understanding, and supportive doctor imaginable. She truly cares about her patients and held our hand every step of the way. Without her, we would truly have been lost. I’m very thankful that she was in this struggle with us. 

We were told the IVF was our best, if not only, option for a successful pregnancy. But of course, that’s incredibly costly. However, we did have one option. Our insurance covered one round of IVF per lifetime. One chance, one hope. We would have to cover our own genetic testing but the IVF should be covered. I say ‘should’ because thus began the 3 month battle to get coverage. 

The insurance company argued that I wasn’t “infertile” because I could get pregnant. I had gotten pregnant three times and the doctors said I could get pregnant again. The insurance company felt like we should just keep trying and keep rolling the dice and keep suffering losses until we got lucky. I couldn’t do it. I couldn’t face that. Luckily, Dr S doubles as a superhero and with her help and backing and personal letters and phone calls to the insurance company, the oversight and the appeals committee… she got us approved for coverage. We would move forward with our IVF cycle in March. Dr. S felt very confident that we could get 10-12 eggs and have at least 2 be chromosomal normal and that there was every reason to expect those to implant and go to term. 

So we were feeling positive about our position and our cycle, hopeful even. This was good because at this same time, I was dealing with incredible family stress and turmoil. My Dad had a terminal lung disease. He was sent to the ICU in February because of inflammation of the lungs, after which he was transferred to a hospital specialty care center. Our only hope for his survival was a lung transplant. I’m praying and asking everyone else to pray because I want so very badly for him to live to be a grandpa. I was able to fly out and spend 10 days with him in February and I couldn’t even believe how ill he looked. But within a few days, he was stabilized. We knew that a transplant was the only thing that would save him but he seemed better. Through all this, he was still more focused on our cycle and our future children then his own health. So he sent me home with strict instructions to have a good cycle and “get to making babies.” Even after being rushed to the ICU twice for imminent lung collapse, when he got on the phone – all he wanted to talk about was how I was feeling and how things were going for me. 

I found out later that throughout this cycle, he was rapidly declining. My mother and sister were forbidden to tell me how bad he was. My Dad was adamant that the only thing that mattered was this cycle – our one chance at having a baby. He knew I’d cancel and come to be with him if I was told how bad his health was so he commanded that everyone keep the secret. 

In March, I went in for egg retrieval. They got 10 eggs. Dr S was happy with that number, the likelihood for at least 2 normal embryos from that was very good. I was at the hotel recovering a couple hours later when we got the call. Dr S asked if she could come see us. I thought it was so strange and I kept asking if everything was all right… finally she said “I’m so sorry but all your eggs are abnormal – so abnormal we didn’t even fertilize them. I don’t know how to say this but there is no possibility for you to have children with your eggs.” I sat there…shocked. I couldn’t even move. E finally pried the phone from my hand and Dr S told him the news. He held me while I cried and cried and cried for hours. Dr S had told E that we could consider Donor egg, that was a good possibility for us and to let us know when we were ready to talk about options. 

The hardest part for me was picking up the phone to call Dad and tell him that it was bad. That he wouldn’t have grandkids from me.  Unfortunately, by this point – Dad was too sick to talk on the phone. He couldn’t even breathe without assistance at this point. My Mom broke down and confessed that Dad had mere days to live…. 

We got on a plane the next day. I know what it feels like to experience “heartbreak.” I thought with my losses, I already understood the concept but I had no clue just how many pieces one’s heart can shatter into. The next day, my Dad passed peacefully. He is in a better place- no longer struggling just to breathe. He was surrounded by his family.  I made it in time to see him, to say goodbye. I did not tell him our devastating news.  I simply said "you will have wonderful grandchildren someday who will hear all the funny and loveable Dad stories." And promised myself that I would not have some of my final words have been a lie. Someway, somehow - we would have babies.  I didn’t know whether that would be donor, adoption or what but I was determined that we would have a family….

Then I got smacked again a few weeks later. My sister in law announced she was pregnant… again. And for the second time – this was an “oops”. I lost it. How unfair! She is barely making ends meet; she has only been dating the guy a couple months (different father from her first child) and she doesn’t even WANT more kids. E and I sit here with a stable marriage, stable income, own a house, and desperately – like would hack off limbs to make it happen – want to have kids. And we were struggling with procreation while she gets knocked up whenever the condom breaks. Thanks Universe - you suck. 

I admit I didn’t deal with her pregnancy at all well. I avoided her. I begged out of family gatherings. I refused to participate in holidays for more than a few hours. And ultimately when the baby was born, I couldn’t stand to visit or see him for over a month. I hated her, I hated life, I hated everything.

The day after sister in law announced was Father's day.... and I didn't have my Dad. I knew that day would be hard, but it was almost unbearable. I always prayed and imagined my kids running up to give him Father's day cards.... and it’s never going to happen. I delivered my father's day card to the cemetery....  I could barely see straight. This pain in my chest and my heart was just suffocating. Supposedly, God doesn't send you more heartache then one can bear... but I really felt like he's overestimating me.  

But I think my Dad was looking down on me because that day was also when my Mom handed me a check. She said it was from my Dad and his life insurance. My dad is an amazing and wonderful man - his last thoughts were for me and his future grandchildren. He left money in his life insurance specifically designated to pay for another IVF cycle. Dad said that grandbabies would be his greatest legacy.

So we tried again - with a Donor IVF cycle. After several false starts and delays and problems with getting a donor - we had our first DE IVF cycle in October. Unfortunately, we only had one egg fertilize. We did a 3 day transfer of a single fair embryo but resulted in a big fat negative. Heartbreak… But once the initial devastation passed and we were on a (somewhat) more even keel.... we talked about our options. Because our clinic guarantees 2 high-quality day 3 embryos and we didn't have that - we get a free DE IVF cycle. So we knew that we can take one last crack at pregnancy... but we had to make a decision about whether to open ourselves to possible heartbreak once more.... 

I didn't want to throw away the wonderful gift that my Dad gave us...and I wanted so desperately to be a Mom, to carry our baby, to hold our baby in my arms... it broke me down to think it might never happen. So after a lot of discussion and soul searching - we decided to go for it.... one last time.
   
So we chose a new donor and scheduled our next cycle for January.   I opened my heart to hope one more time. That "hope" character is a sneaky little bugger - it crept out of the dark hole I threw it in and snuck right up on me. But I was also 100% terrified... like ready to have a panic attack every time I thought about doing this again… train of thoughts like “I can't believe I'm doing this again. Am I crazy? I am crazy.” But not only is the trying to conceive tough to manage but it was my fist holidays without Dad.... and the grief and sadness threatened to overwhelm me on a daily basis. Even if someday (whether by IVF or adoption) I had children, I would never see him hold his grandbaby or bounce them on his knee.....and that still breaks my heart. 

Unfortunately Donor cycle #2 was also a bust. We had two decent embryos but neither stuck. Black black hole of despair. And on top of this… I finally had to visit Sister-in-law and her new baby. I needed to face the situation eventually; it was having a super negative effect on E and my already suffering relationship. So I womaned up, took some Xanax and went. I spent the entire drive over there in tears and panic attacks (we had to drive around the block a few times until I calmed down). But I held it together the whole time actually. I choked up a few times but kept control. E had talked to his sister ahead of time and asked her to not "push the baby" on me or ask me to hold him or anything. And she was actually pretty respectful of it. I didn't get the nerve to hold the nephew but I survived. E was very understanding and empathic - now that I was "actually trying" to deal with my emotions. E actually refused to hold the baby because it would be so painful to me (gold star for awesome hubby there).   

That was one of those times that I was reminded why I married that man. Our relationship had really been on the rocks. It’s been said that infertility is a marriage killer and I can attest to how very true that is. It was very hard to hold it together as a couple with all the stress we were under. I look back and sometimes I wonder how we managed it….

At this point, we were discussing adoption. I just couldn’t face another IVF disappointment. But E was not so gung ho. He wanted to try IVF again. There was still some money left from my Dad and Dr S told us that we may qualify for the guarantee program. Basically, you pay a lot more money and you get three tries and if you don’t bring home a baby – your get all your money back. After much discussion, I agreed to apply for the program. My only stipulation was that we pursued adoption at the same time. E agreed. I thought to myself “I can hold it together through three more cycles, I’ve held through 3 years, 3 losses, 3 bad IVF rounds… I can do one more year.” And honestly, I didn’t think we’d get into the program. With my history? I felt like there was no chance. 

But in February, we were notified that we qualified and were scheduled for our cycle in March. What were we thinking? It wasn’t going to work… no way. But I had agreed to this so I plunged in.
The cycle was actually the smoothest we had ever had. We transferred two beautiful little embryos and settled in to a two week wait. 

I will always remember that day…that Monday… I had taken a pregnancy test the day before and it was stark white negative. Not surprising… I knew it wasn’t gonna work. But that morning I looked and swore I saw something. My eyes must be deceiving me, right. I asked E but he said it looked negative to him. I couldn’t shake the feeling though… I begged E to go to the store and get some more tests. He finally relented and agreed but I think in his head he was thinking “my wife has gone off the deep end and is seeing things now.” But he did it. I retested and screamed when the second line showed up! It worked! It worked! I sat down and cried happy tears and kept looking at the test, to make sure it was all still real….

But it was. 8 ½ months and 14 hours of labor later, my beautiful rainbow baby was born. I'm absolutely head-over-heels, twitterpated, smitten, in love with him. He is the delight of my life, he is my miracle.  As I look back, I can say it was all worth it. The pain, the loss, the grief, the soul battering, it was all worth it the minute I held him in my arms and felt his breath on my face, had his little hand wrap around my finger… it was all worth it. 

My miracle didn’t arrive when and how I’d expected all those years before. He came on his own time and in a more unusual way. But that doesn’t matter, his genetic origins don’t matter one iota. When he says “Mama”, there is only one person he’s talking about and that’s his mother – ME. It doesn’t matter how they come into your family – natural conception, IUI, IVF, donor, adoption,– love makes a family. 

My journey wasn’t easy; it was the darkest, most terrible journey I think anyone can walk. And for those that are still walking it – my prayers are with you. I know how rough the road is and I know that it will not necessarily end with everyone getting a happy ending, a baby in everyone’s arms. My heart breaks at the thought…. But I do hope my story will help someone somewhere… to know that miracles can and do happen. I am hugging mine right now. 


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2015 NIAW "You Are Not Alone" Series

Katie's Story
J's Story

1 comment:

  1. J, like with Jennie, while I knew the basic details, seeing it here all in one place broke my heart all over again for you. HUGS!

    ReplyDelete