Tuesday, February 19, 2013

And then it hits me.

How is it that I can be perfectly fine one moment, and the next I'm falling to pieces? I will just be sitting there, watching something on tv, listening to music or somebody talking, and there it is. That overwhelming, smothering grief that literally takes the breath out of my chest. Something will trigger it and then I'm a crying mess. It's frustrating and exhausting.

For example, there is absolutely nothing on tv right now. I could knit, but I am just sitting here with my iPad with the tv on in the background. Long Island Medium is on. I never have really paid much attention to this show. The woman on it seems kind of out there and I don't normally watch those kind of shows. But I decided to pay attention to it for some reason and my mind starts making associations. It's when she says she senses these people's loved ones around them. And I get to thinking... Are my babies here with me? Do they sit next to me or follow me through the house? Do they long for my hugs like I long for theirs? Do they watch me cry over them and do they cry for what could have been, too? It's just crazy to think about it. My babies existed. They were alive for only a little while, but they lived. They had souls. But is it weird of me to think about this? I sometimes feel like I am just out of reach of them, like if only I could stretch my arms out just a little farther, that I could hold them.

There is one thing I regret with my entire heart. I never held Harper or Eli after they were born. Both were born sleeping after traumatic deliveries. I was so stricken with anger, fear, complete and total crippling sadness that I could just not bare to see them passed on. I think in my mind, I thought that if I didn't see them, their deaths didn't happen. I could hold onto their memories as they were...their little kicks against my belly, my cravings that I had a with both of them, their ultrasound pictures of their perfect little bodies...I just couldn't accept that they were gone. And now I regret it. I will never know what their sweet little faces looked like. I will never know my own children. But I still have them in my heart. I hope that they knew that, if they could. That I love them with all of my heart and if I were emotionally capable, I would have held them close. I am so angry at myself for this. It's something I'll never get another chance to do.

I am a crying mess as I write this. But I think I need to do this more often. I have a tendency to be tough...to be a survivor and move forward. Which is not a bad thing, do not get me wrong. But I need to allow myself these feelings. Even if it is emotionally draining.

Now that I have my TAC in place, my husband and I are going to start trying again. I hope I am emotionally ready for this. I know that I did the right thing having the surgery done, but I will need a lot of courage and strength to get through this. I can do it. I am doing it for Harper and Eli.

Sunday, February 17, 2013

new hope -- {{otherwise known as my TAC journey}}

Well, hello there. It has been a very long time since I wrote in this blog. I knew that would happen. I would start a new blog, only to forget about it. It always happens. Anyway, a LOT has happened since my last post.

I was in a very bad place when I last wrote. I was depressed, hopeless, feeling like the biggest failure on this planet. Betrayed by my body. What else was there for me? If I couldn't successfully bring a child into this world, what kind of future was I going to give myself and my husband? It was a really hard time. One where I did not even recognize myself. Literally, I would look into a mirror and stare at my reflection, confused. I would look at old photos of myself and literally wonder who I was then, who I was now. You could see it all over my face. I was lost.

One day, I became angry and vigilant. I am not sure why, but I knew in my heart that this cannot be it. This cannot be where the road stops. There has to be an option for women with incompetent cervix. My good friend did some research for me and found some blogs. I spent hours on Google. I typed in "incompetent cervix and cerclage". I read a story from the University of Chicago Medicine hospital's website. It told a story of a woman who had very similar experiences to mine. Read her story here. Except hers ended in a happy ending - with a full-term baby. She had a procedure done called a "transabdominal cerclage", also known as TAC. After reading her success story, I became obsessed with research on the topic and the success stories. I spent a good two weeks getting all of the information that I could.

Without going into too much detail, the TAC is a very strong band that is placed at the very top of the cervix, which prevents funneling and early dialation due to the weight of a growing baby. This is done through abdominal surgery with a bikini incision, similar to a c-section. The band is so strong, that it can support the full weight of a grown adult. It is permanent and does not need to be removed unless you choose to. It can be used over and over again. You must have a c-section at delivery, but this is a small price to pay for a normal, healthy, full-term pregnancy. The success rates are around 95%, compared to a traditionally placed transvaginal cerclage (TVC), which only has about a 75% success rate. Since I had a failed TVC with my last pregnancy, seeing the stat of 95% success with a TAC, I knew I had to get this surgery done. If anything, at least I knew that I had done absolutely everything I could to have a family.

I went in for a check-up appointment with my OB with questions about the TAC, hoping that she would suggest that I proceed on with the surgery. Instead, I was met with disapproval. I was speechless. Literally, I had nothing to say to her. She basically told me that she would be very wary of me every trying to get pregnant again. With my failed TVC, it had ripped through my cervix and I had very little left. Another TVC was not an option, and she did not reccomend the TAC because she had never seen one placed before. She said it was a "very aggressive" approach and was just very, very negative. She told me I should consider adoption. I left that appointment very confused. I felt like I had been punched in the stomach. I had no air left to breathe, like I was suffocating. How can one woman, in thirty minutes, basically tell me to give up on any chance of having a baby of my own?

Even though she made me feel defeated, it really just fueled the fire. I have always been a very stubborn woman. I don't like to hear the word no, and when I do, it only makes me work harder to get what I want. So, that evening, I went back to the University of Chicago Medicine's website. I looked up more information on the surgeon who preformed this surgery, Dr. Haney. I typed him into Google and found a group on Yahoo,  Abbyloopers. I joined the group and read up on Dr. Haney as much as I could. I quickly found out that he is one of the top doctors for TAC, and I knew I needed to talk to him. If I was going to get this surgery done, it was going to be by the best.

I sent him an e-mail, detailing my experiences and inquring about the surgery. He wrote back in only six hours, telling me he would love to talk to me on the phone to have a consultation. I was so impressed by his promptness. I called the office, set up the consultation, and a week later, I was talking to one of the most compassionate doctors I have ever talked to in my entire life. Here he was, listening to my story and understanding what I really went through. He just knew that he could help me. He went on to explain that many OB's are afraid of the TAC procedure because they are uneducated about it, and it is considered a "risky surgery" because it is done so close to the uterine artery. But for an experienced surgeon, it is no issue. He said it is the best "fix" for IC and that I would have a full term baby with this cerclage. He was so positive! What a breath of fresh air. For the first time in months, I did not feel abnormal. I felt understood. I felt like finally, somebody was in my corner.

After calling my insurance company to make sure everything would be covered, I made the surgery date. January 3rd, 2013. My husband's parents live in Chicago (we live in Cincinnati), so we knew we would have a place to stay. During this time, I found a new OB. She was impressed that I did the research on my own, even after my "ex-OB" recommended otherwise. Even though she had not had a TAC patient of her own, she had seen one in a patient before. I was thrilled. She had a positive attitude about my decision, but wanted me to meet with their MFMs to have a chat with them about the surgery. I told her I would, but their opinions wouldn't change my decision. I met with two. One who was super nice, understanding and proactive about my choice. The second, however, was not so convinced I was doing the right thing. She even went as far as to say my TVC was not considered a failure and would treat me with a "preventative TVC" at 12 weeks with my next pregnancy. I told her absolutely not, I would never go through that again. I was insulted that she didn't consider the loss of my baby a "failure" of the TVC (it ripped through my cervix and my water broke - excuse me, how is that not a failure?). She told me that the TAC was more morbid to me, as it was a surgery where they would be making an incision and I would never be able to deliver vaginally. I basically stopped listening to her as I had already had the surgery scheduled and knew she would not change my mind otherwise. I knew so much more about TAC than she did. I told her so and she seemed insulted. I was almost embarressed for her ignorance. Excuse me for being an advocate of my own mind, health and body.

January came a lot quicker than I thought it would. I was nervous about going under anesthesia, nervous about the healing process, and anxious about the unknown of it all. I had no idea what to expect. When we arrived at the hospital at 6:00 am, I was anxious. They called me back into a room and grilled me about my medical history and then started my IV. Dr. Haney came in and I instantly felt so much better. He put me at ease, told me I was going to be fine. I had instant trust in this man, it is so hard to explain. Especially since I had basically lost all trust and confidence in doctors after everything I had previously been through. I even told him this and he told me that it was normal to feel that way and that I would bring home a baby one day. I kissed my husband goodbye and hugged my family (my dad and sister came up to Chicago with us, and my mother-in-law was there as well) and walked back into the OR. The last thing I remember is laying on the table and talking to the nurse about how my husband and I met. Then, magically, I was waking up in recovery cranky and nauseated. I remember the recovery nurse asking me if it hurt to be tattooed (I have two roses on my shoulder/upper arm in memory of Harper and Eli) and I remember biting his head off, saying of course it hurt! I just remember being confused and sick to my stomach, thanks to the anesethia. Before I knew it, I was rolled into a room where I fought to stay awake the rest of the day.

Recovery was not that bad, I can honestly say that. I am not sugar coating it. Yes, it hurt, but it was not the pain I imagined. It was weird having my core pretty much out of commission, but with pain meds and walking, it was managed. We drove back home just a couple of days later after visiting with my husband's family. I recovered another week at home before returning to work. And now here I am. Reflecting.

I wish I would have written in here during the actual experience, as I know I am leaving details out. But I think I was taking the time to absorb everything. We are going to start trying for another baby and I am a mixture of emotions. I am crazy nervous, excited, and still greiving over Harper and Eli. I only wish I had known about my IC and TAC before we lost them. But that is the evil of IC. It is a sneaky beast. You don't realize something is wrong until it is. And even then, after that initial second trimester loss, doctors do not immediately suspect IC. It's not usually until after a second loss do they begin to investigate, and it makes me angry. If only I had known, my babies would be here. But I can't think like that. I did not know. I tried everything I could, and now I am doing everything I can to bring their future siblings into this world. I know they are with me everyday. I felt them with me during surgery. I feel them in my heart. But, the hurt just doesn't go away. It never stops. The hurt of the loss of my babies is still fresh and it still sneaks up on me when I least expect it.

But I am moving forward now. I am moving in the right direction. I cannot live in the past. I will never forget the past, but I cannot stay there. It is a cold, dark and scary place. I am pretty sure I have PTSD from all that I have been through, but I will fight through it. I will continue to fight. I will have a family. I have done the right thing and I can't wait for the adventure to come. For a normal pregnancy. For normal OB visits, where I am not in fear of what I will see on an ultrasound. Where I am not checking for blood everytime I go to the restroom. For once, I can look forward to planning a baby shower because I can feel confident that my pregnancy will continue past 20 weeks. I will not be that oddity where multiple doctors look at me and have no idea what to do. I will only go to L&D to deliver my baby at full term and I will leave with a precious bundle instead of a broken heart.

I will.

 Jen