Going against doctors orders -- sort of

When we went in for our two week check-up, Dr. McGowen advised us to wait two or three cycles before trying to conceive. She said there is no proof that it is dangerous not to wait or that the chances of miscarriage are any higher, but she wanted us to have time to recover both physically and emotionally.

Now that I've had one cycle, and it's been almost two months since Jenna died, I don't want to wait. I am not over Jenna's death and won't ever completely be. This has changed me for the rest of my life, not just her death, but the whole experience. If I waited until I was emotionally healed, it would never happen.

I'm feeling very good physically, better than I've felt in a long time. I'm down 33 pounds and walk every day. I'm eating better, and I've cut out most of my sugar. I think I'm going to do a more regimented exercise routine though because I want to take off a few more pounds before we do get pregnant. I'm taking Metformin, prenatal vitamins and extra folic acid.

So, this cycle we are going to trying to conceive, but not, if that makes any sense. I'm not going to use my fertility monitor, but I am going to take my temperatures. We aren't going to use any birth control at all, and we are going to have sex on the right days. I doubt it will work this time, because we have been married for 10 years and have never used birth control at all, except for the past few weeks. The only time I have ever been pregnant is when I took Clomid.

Next month, we will be using the fertility monitor and taking my temperatures. When that doesn't work, I'll call the doctor for a prescription of Clomid.

I just hope it works in the end. I have this fear of not being able to get pregnant again. I am so afraid that Tessa will be an only child, and I will always feel like our family is incomplete. I'm also scared that we will be able to get pregnant, but something bad will happen again. I don't think I can take that.

Thank you

I wanted to personally thank all of you for your sweet comments about Jenna's photographs. Those of you who have lost a little one much earlier than your due date knows the kind of courage it takes to show off those photos.

I see her as beautiful, but I also know I'm looking at her through the eyes of a mother. I was so afraid that others wouldn't see her as beautiful. Every time Tessa and I look at her pictures, Tessa talks about cute she was. She just sees her as her little sister. Today, my sister-in-law looked at the pictures, and my nephew looked over her shoulder while she was doing so. He said, "Oh, she's so bloody."

Tessa said, "No, she's not bloody, Luke. She's red because she was very, very sick. That's why she died."

I also have to take the time to say thank you to all my Internet friends, especially the ladies from the debate board at www.tryingtoconceive.com/newSite2 and from www.babycenter.com second and third trimester loss boards.

I have visited Trying to Conceive for the past six years. I've been going to the debate board for the last five years. We've been through a lot together there, and they were there when I first found out something might be wrong. I can't tell you how many e-mails I received from the members of that board. One lady (you know who you are you and you know I love you) sent me a card with a quote from Winnie the Pooh because she knew how much I loved that cartoon.

Another lady read long e-mail after long e-mail and always gave me a reply within a short amount of time, always reassuring me that what I felt was normal and worrying with me. I think she also knows how much she means to me. She's as much a friend to me as anyone, and I've never even met her before.

After Jenna died, the second and third trimester loss women were wonderful. I've made some good friends there. I wish none of us had to be there, but I am thankful they were.

I don't think I can adequately say how much all of the support meant to me, but I have to say, "Thank you."

Still mad at my inlaws

My inlaws did not travel here for Jenna's memorial service. They didn't even call on the day it was held to check on us. Their friends, who have known Brian all his life, weren't able to attend because the wife has been ill lately, but they still called us. I wish they were Brian's parents, instead of the ones he had. His own brother didn't even call us.

His mom hasn't said one word to me. They sent us a card before Jenna died, but it was addressed to Brian only. My name wasn't even on the card. She sent a package to Tessa the other day. It was a hopscotch rug. In the bottom of the package was a sack of dress shirts for Brian. Guess what? Nothing for me. When she calls, she doesn't ask to speak to me. When I answer the phone, she asks to speak to Brian and doesn't say anything at all. I never expected my father-in-law to speak to me, because he hardly even talks to Brian.

They've always been asses to me, and I've pretty much taken it. But, them not coming to Jenna's memorial service was the straw that broke the camel's back. His mother's excuse was that her nephew was dying from cancer and could go at any minute. Guess when he died? Last Sunday, nearly a month after Jenna's memorial service. His dad's excuse was that he just didn't do funerals.

When Brian and I were talking about it today, he said, "My dad didn't go to Gene's funeral." Gene is his cousin, the one who was dying from cancer. I told him that Jenna was their grandchild and should have been there. I said, "What about if it had been Tessa? Would they have come?"

He said, "My mom might have, but Dad wouldn't." How sad is that? I just can't imagine. The idea of not showing up for a loved ones funeral is foreign to me, especially if it's a little one. My mom and stepdad came to the hospital when Jenna was born. They called everyday to see how I was feeling. They might live closer, but I would think the death of your granddaughter would make you come running.

So, Brian tells me today that his mom wants us to come visit before the end of the year. I told him I wasn't going and that I was still mad at them and didn't know when I would get over if I ever would. He said that he and Tessa could go and visit while I stay here. That's not going to work either. I'm not letting him take her down there to be around those people. They obviously don't care very much about any of us, so why should I allow her to go around them?

Maybe I'm being petty, but at this point, I don't care. They've hurt me more than once, and I'm not going to take it anymore.

Starting over again

After complaining the other night about not starting my period, I did today. While I'm extremely happy to be on my way to trying to conceive again, I'm a little sad, too.

When I got pregnant with Jenna, I thought I was finished with all of it. I didn't think I would ever have to take my basal body temperatures first thing in the morning. I didn't think I would have to chart at www.fertilityfriend.com and analyze every dip or spike and every symptom. I thought I was done peeing on a stick forever.

I thought I was through with the pain that comes month after month when your period arrives or you get a negative on a pregnancy test. I was really looking forward to not going through that or any of the rest of these things ever again.

In fact, I was planning to have an IUD put in after Jenna was born, and later, I was either going to get a tubal or Brian was going to have a vasectomy. We knew we would be done with two children.

So, now I have to start all over. This cycle, we will be using birth control, but I'm still going to take my temperature, just to get back in the rhythm of doing so. When I became pregnant with Jenna, I put the thermometer in my night table drawer. I've gotten in out, and it's laying by my lamp, ready for me to take my temperature in the morning. Next cycle, I will be using my fertility monitor, and I do have the test sticks ready for it.

I just wish I didn't have to go through all of this again, because it would mean Jenna was still alive and waiting to be delivered in December.

Sharing Jenna

Since Rita and Justin didn't think the pictures were too bad, I decided I would share them with all of you. I changed the color to black and white because it keeps them from looking so bad. When Now I Lay Me Down to Sleep sends me back the cleaned up versions, I will post them as well.

If you are reading this blog and look at the pictures, please leave me a message. I want to know who is looking at Jenna. Also, I would love for you to add yourself as a follower.

Afraid of comments

A few weeks ago, I posted about how much I regretted not having Now I Lay Me Down to Sleep come to the hospital to take pictures of Jenna. The photographs the nurses took aren't that great, and I wish I had something better to show to people.

The co-founder of NILMDTS contacted me and asked me to send her the photographs through e-mail. Our scanner at home doesn't work, so I knew I would have to bring them to work with me.

However, I haven't been able to find the courage to do so. I don't know a whole lot about using the scanner here. It's a little more high tech than the one I have at home. There are only two people who know how to use the scanner here. I'm afraid of hearing the comments about how bad she looked.

One of the people is a good friend of mine, and I know he would probably wouldn't say anything. But, I don't want to make him uncomfortable, and I think the pictures probably would. I am sure he would do it for me if I asked, whether it made him uncomfortable or not, but I couldn't find the courage to ask him.

The other person can be incredibly insensitive without meaning to be. She tries very hard, but I don't think she realizes how she comes across. For example, the day after we got the diagnosis of Trisomy 18 for Jenna, she came up to me and asked me what our options were. First of all, I was still processing the devastating news that my child was going to die. Second of all, it really wasn't any of her business. I told her what our options were, and she said, "I think I would carrying her for as long as I could, so maybe I would have the chance to get to know her." Blah, blah, blah, sorry but you don't know what you would do in this situation until you've been there. I know she wasn't trying to hurt my feelings, but every nerve in my body was sensitive at that point. I knew which way I was leaning at that point, so I really didn't need her to give me what she thought was another viewpoint.

So, I know she would have something insensitive to say, without meaning to. She just doesn't realize how she sounds when she opens her mouth. Rita, another co-worker, who is also a close friend, told her not to ask me a hundred times a day how I was doing when I came back. Have I ever said how much I love Rita!!! I didn't need to be asked that over and over again. The first day I was back, I fought tears the entire time. It wouldn't have been pretty if she asked me that a thousand times.

So, today, I'm finding the courage to ask Justin to scan the pictures. He won't make insensitive comments, and I'll know he'll do it. I'm finding courage for all sorts of things lately.

So frustrated

Today is six weeks since Jenna was born, and I still haven't had a period. We have to wait two to three cycles before we can try again, and if I don't have a period, I can't get to that point.

I want to be pregnant again by my due date. I know another baby will not bring Jenna back or replace her, but I want to do something to fill these arms that feel so empty.

I'm doing everything right, too. One of things to help those with PCOS is to lose weight. Today, I weighed and I'm halfway to my first goal. I've lost 33 pounds. I'm taking 1000 milligrams of Metformin twice a day. I've started taking my prenatal vitamins, and I've started taking extra folic acid.

I'm exercising every day, but not over-exercising. I know that over-exercising can keep you from having a period, but that isn't the case here. I know normal is anything between four and eight weeks, but I'm just so ready for it to get here.

Not only that, I have been feeling like I was going to start my period for the last two weeks. I get that crampy, headachey feeling, just like it always was, but nothing.

After I have my period, I'm going to start taking my temperature again, even though we will not be trying then. I just want to get used to doing it again. I won't use my fertility monitor, though. I will wait until the next cycle for that. When I don't get pregnant that cycle, I'll call the doctor and have her give me a prescription for Clomid.

I know it sounds strange to wish for your period to arrive, but I really do.

Out of the blue

I have been having several good days in a row. I wasn't crying much at all, and I saw my counselor this morning without shedding a tear. All of that changed with an out of the blue moment.

Today, a co-worker/friend and I decided to go to lunch. She asked me if it would be all right for her teenage daughter to come. Her daughter has a four month old baby girl. I told her that it would be fine, that it's usually only new babies that bother me.

She had to go to the police department to pick up police reports and see if anything interesting had happened that she could write about, so we decided to meet over there. I got there a little early, and the waitress put me at a table. Right in front of me were two women with a brand new baby girl.

I thought about asking the waitress to move me, but I knew I needed to suck it up and just sit there. So, I stayed. I tried not to look at her. Then, my friend's daughter came in with her baby girl, a beautiful sweet baby, so little and feminine. My heart started breaking, but I tried not to let it show.

I did pretty well until the baby at the next table woke up and wanted to be held. The mother picked her up and put her on her shoulder, with the baby facing me. I had to see all the stretches, sweet little faces, movements this baby made. My friend asked the mother how old the baby was, and she was six weeks old.

Tomorrow is six weeks since Jenna was born. It hit me like a ton of bricks all over again, out of the blue. I was never going to see my baby make those faces, would never get to hear her cry out for me, no stretching and no crying. I am missing out on so much.

I left the restaurant early because my eyes kept filling up with tears. I always turned away so they wouldn't see it. I told my friend I had to get a prescription filled. Part of it, I brought on myself because I said the baby could come, but I didn't know there would be a brand new baby in front of me. When I was walking out, I saw a pregnant woman and two more babies. I wanted to run to my car.

Will this sensitivity ever go away? I can't expect people to quit living life and having babies just because mine died. I can't stop going out because of it. I supposed I'll just have to get used to it.

Anyone from Tennessee reading this blog

I am doing more recruiting. If any of you reading this are from Tennessee or have relatives here who would be willing to work with me to see these laws changed, please leave me a message through my blog.

I know not everyone agrees with abortion, but I do believe quite a few pro-lifers believe in exceptions for the life of the mother, fatal fetal anomolies and in the cases of rape or incest.

I need to recruit as many people as I can. I talked with my sister-in-law today, and she said she would talk to my brother about it. She is more than willing, and she thinks my brother will, too, as long as I help him write the letter. I also asked her to ask her parents and her brother and sister-in-law if they will help. She said she was sure her parents would but didn't know about her brother and sister-in-law. She is going to ask them, though.

I've posted on http://www.babycenter.com/ on the Tennessee board, the terminations for medical reasons board and also the Momas for Obama board to find other Tennesseans who feel like I do. So far, no luck. I'm hoping to find someone soon. I've also thought about posting on Craigslist to see if I can find people. I might get hate mail there, though. I guess I should get used to it because once this becomes more public, I will probably get a lot.

So, if you or any of your family is from Tennessee, leave me a message, and I will contact you. Also, if you like reading my blog, please add yourself as one of my followers. I love to see who is reading.

Recruiting letter writers

I have sent two e-mails out, one to our state representative Curt Cobb and another to NARAL, the national pro-choice organization. I haven't heard back from either of them, so I'm going to print out the copy of my e-mail to Curt Cobb and snail mail it to him. I'm going to wait to see if I hear anything from them.

I am about to write our letter to the state senator. His name is Jim Tracy, and he is a republican who is pro-life. Curt Cobb considers himself pro-life, but he is a democrat. I also have a personal connection with Curt because his mom was my kindergarten teacher. I didn't feel like I needed to spend as much time crafting his letter as I will have to Jim's, even though I did spend a lot of time on it. Jim Tracy is also a member of the church of Christ, which is very conservative and can be very fundamental. I want to reach him and touch his very core, make him see that these laws need to changed. My words have to be carefully chosen with him.

I've also been talking to people the past few days to recruit them as letter writers. My mom was my first recruit, and she is more than willing to help me out. My aunt was next, and she is also willing. Today, I recruited my co-worker, cousin, sister and another aunt. I know it seems like a small number of people, but at least, it's a start. I have to get over my fear of asking people whether they will be willing to help me. If I'm going to get "Jenna's law," as my aunt calls it, to pass, I have to be tough and not afraid.

I'm also starting a petition. If I can get enough people to sign it, I can present that to our representatives, too. I plan to be persistent. Maybe if I make enough noise, they'll try to get it to pass just to shut me up.

My letter writing campaign

When Jenna was diagnosed with Trisomy 18, I had to make the hardest decision of my life. I had to decide whether to end the pregnancy early or carry to term. I wanted to spare her a life of pain, but how could I end the life of much-wanted, much-loved child?

When I made my decision to end the pregnancy early, I likened it to turning off the life support on a brain-dead child. My body was Jenna's life support, and by ending the pregnancy, I was turning it off and giving her a chance to die with dignity and not suffer. However, as all of my long-time readers know, I wasn't able to terminate due to state law.

I've been reading up on the laws in Tennessee. They are absolutely horrid when it comes to a woman's right to choose. The law states that all abortions in the second trimester be done in a hospital, but the law also states that doctors and hospitals can refuse to perform them. How is it right for a hospital to deny me treatment that I want and feel I need? The law about hospitals and doctors doesn't even offer an exemption in the life of the mother. What about in the case of pre-eclampsia at 20 weeks? Would the woman have to die because a hospital refuses to take the baby?

These laws have to be changed. They absolutely can not stay as they are written. An exception has to be added to the state laws for the cases of a fatal pre-natal diagnosis, rape or incest and the health of the mother. I believe all women should have the right to choose, but these special circumstances should be the exceptions for these laws.

According to the NARAL Pro-Choice Web site, Tennessee ranks a dismal D+ in reproductive rights for women. That has to change, for you, for me, for our daughters and for all those sick unborn babies who will have to suffer if they are brought to term.

So, I am starting a letter writing campaign. I found out that our state representative is Democrat, however, he is also pro-life and so is the Republican candidate. Most of our state leaders are pro-life. It's going to be a hard road to go, but I have to do it. This will be Jenna's legacy.

It's for the best

One of the things we don't want people to say to us is that it's for the best. In fact, the lady who wrote the letter in my last post said it best:

"Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

Every day I feel guilty that I wasn't able to do something to help my daughter. Momma's are supposed to kiss the boo-boos away, but Trisomy 18 is not an ordinary boo-boo. It's fatal, always. Nothing I could do would change that. It haunts me.

I should have been able to find a doctor to help her. Love should have been enough to save her, but it wasn't. Trisomy 18 was just too much for her to overcome.

If love could have saved her, Jenna Grace would have lived forever. She was loved by a lot of people before she was even born.

Jenna didn't have a chance. From the moment sperm fertilized egg, she was doomed to be incompatible with life. Like the writer of the letter, I don't need to be reminded of that. I will always know it, because she isn't here with me. She's dead, and even though I have said myself that it's for the best and know it to be true, I wish it wasn't. I wish she didn't have to be sick at all.

What we wish everyone knew about pregnancy loss

I found this on a discussion board I frequent, and Ithought I would post it here. I will probably do another post discussing a few of these.

What we wish you knew about pregnancy loss:

A letter from women to their friends and family by Elizabeth Soutter Schwarzer I assert no copyright for the material. Please use it as you see fit to help women who have endured this terrible grief. Thank you.

Date: Sat, 23 Mar 2002

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe. This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.

When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

*Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

*Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out. -Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

*Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

*Don't say, "Thank God you lost the baby before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

*Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

*Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

*Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

*Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

*Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

*Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring him safely into the world and I couldn't do it. I was supposed to care for him for a lifetime, but I couldn't even give him a childhood. I am so angry at my body you just can't imagine.

*Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

*Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

*Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

*Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

*Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

*Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.

If you're my boss or my co-worker:

*Do recognize that I have suffered a death in my family - not a medical condition.

*Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

*DO understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come. Please don't bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while."

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

Nobody but me

Yesterday was one month since Jenna was born, and nobody remembered-- nobody but me. I don't blame Brian so much as he has been working so much lately that he wasn't even sure of the date.

I thought my mom would remember or my sister, my aunts, my friends, someone besides me. I wanted someone to say, "I remember and I'm sorry." No one did, and I didn't feel like telling anyone. I wanted them to remember her on their own. I bought two balloons, a pink one and a white one, yesterday and released them on my lunch hour. I didn't put a note with them. Maybe next time I will.

I just wanted someone to remember. Is she going to be forgotten forever? Is my mom always going to leave her out when she says how many grandchildren she has? People don't ask how many grandchildren you have that is living; they ask how many you have. She has five altogether. She shouldn't forget about my Jenna.

Am I doomed to be the only one who remembers her? I just want her life to have mattered. I told my counselor that, and she said, "She did matter. She mattered to you," and yes, that may be true, but if she had lived and been healthy, she would have touched countless lives. I still want that for her. It just seems like nobody remembers her, nobody but me anyway.

Jenna's story

We lost Jenna one month ago today. In honor of that and also because of new people who might be coming to my blog, I decided to post the version of her story that is on her legacy page at www.trisomy18.org. I hope I help someone with our story.

My husband, Brian, and I spent three years trying to conceive our oldest daughter, Tessa. After three rounds of Clomid, we were pregnant, and she was born in May of 2003. After going through all of that, we weren't sure if we wanted to try for another baby or not.When my granny died in December of 2007, I knew I wanted to have another baby. I knew she would have loved another great-grandchild, and I was really feeling the baby itch again. So, I asked my doctor to help us, and she prescribed Clomid. The first month didn't work, but we conceived on our second try. We were overjoyed, especially when we found out we were due in December. I thought we would be able to take that month back from the grief we would experience over Granny's death and turn it into something joyous with the birth of our second child. How wrong I was.

Everything was going well with our pregnancy. When I was pregnant with our daughter, Tessa, I was sick morning, noon, and night, but with this baby, I hadn't been sick at all unless I went too long without eating. The worst symptom I had was extreme exhaustion. When I was 16 weeks pregnant, we went to the doctor July 7, 2008, for our monthly appointment. Our doctor asked if we wanted to have the AFP test and warned it had many false positives. I knew this already, but I wanted to have it done to be prepared in case our child had Down Syndrome or Spina Bifida.

Trisomy 18 was the last thing on my mind. Two days later, our doctor called me and said the test showed our baby had a one in 10 chance of having Trisomy 18. I knew it was incompatible with life. I had read about it when I was pregnant with Tessa.My heart dropped, and my doctor said she wanted to set up an appointment with a maternal fetal medical specialist for the next day. We went in and had a level 2 ultrasound done and then met with the specialist. He told us the baby was small, and it was hard to see organs. He did think the baby had a cystic hygroma and a clubbed foot. He thought we should have an amniocentesis done, but we couldn't have it done that day because the amniotic sac hadn't fused to the uterus yet. He wanted us to give it a week, and we scheduled the appointment for July 18.The next week was the longest of my life. I knew in my heart something was wrong, even though everyone told me not to lose hope. The amniocentesis wasn't too bad and didn't really hurt at all. I was expecting it to be much worse than it was. We were getting the FISH results, which offer results in 48 hours instead of the normal two weeks.My doctor called me on July 23 and told me the FISH results showed our baby was a girl and she had full Trisomy 18. She said that she had never seen the FISH results be different or better than the final results. Before we made any decisions, she wanted to wait until the full results came in. She said she believed if we wanted to, we could say goodbye early and deliver at a hospital in Nashville.

I thought that was what we would do, but I still had many thoughts going through my mind. How could I say goodbye to the baby I wanted for so long? How could I make the decision to stop her heart? I'm not a religious person at all, but I do believe in a higher power and a place we all go to when we die. Brian and I talked about, and we decided we would say goodbye early. We did not want her to suffer, and we both had always believed in the quality of life over the sanctity of life.That night we discussed what we wanted to name her. I said something about Mary Grace, and Tessa said she didn't like it. She wanted to name her Jenna Grace. We decided since she wouldn't ever get to know her sister, we would let her name the baby. Instead of the baby, we now had Jenna Grace. We received our full results July 29. We went to see our doctor, and she said we would not be able to deliver in Nashville. We knew we wouldn't be able to do it at the hospital in Murfreesboro, because it was a Catholic affiliate, but the news we wouldn't be able to do it in Nashville shocked me.

Our doctor said it had to do with the political climate in the state, along with the law here that states second trimester abortion has to be done in a hospital. Many hospitals just don't want to have to do it as many doctors are opposed to it ethically. We were facing the hardest decision of our lives, and we were being treated as though we were doing something criminal.

She told us our best option was to travel to the Atlanta Surgi-Center and have a D&E. She said it was not an abortion clinic, and they had a special program for parents who had a poor prenatal diagnosis. I called and made the appointment for the weekend, as they only did the procedure on Thursday, Friday and Saturday. They asked for a lot of information, including my weight, which I told them, and I also had my doctor fax my records to them. Brian and I made plans for the weekend. Our appointment was scheduled for Aug. 2, 2008, and we left on Friday. They told us I was eligible for the one day procedure. My mom was keeping my daughter for us. On Saturday, we traveled to the clinic and found out we had made a huge mistake. Our doctor had been wrong.

It was an abortion clinic, and I was grouped in with the other ladies, who were giggling and laughing and joking, happy their pregnancies were soon to be over. I wanted to yell at them and tell them I would take their babies, and they should be happy to be pregnant with a healthy child. I’ve always been pro-choice, so it was very confusing to feel that way.I was called back to pay and go over some paperwork. I thought we would be separated from the other girls and women then. She asked me again what I weighed, and I told her. After that, she made some notes and said I would have to wait until the lab technician got there, so they could weigh me as there had been a mistake. She sent me back out to the waiting room. About 30 to 45 minutes later, my name was called again, and I thought for sure we would be separated then. I was wrong again, and they once again sent me out into the waiting room. We had to wait again. The room was filling up with more and more girls and women and the people they had chosen to drive them home after the procedure. My name was called again, this time by the ultrasound technician.

She led me back to the ultrasound room and said a mistake had been made. Because of my height and weight, I wasn’t eligible for the one-day procedure. I had to have the two day, and they couldn’t do it then. She also said the clinic had a special procedure for treating parents like us, and it hadn’t been followed. She apologized and said she was going to do an ultrasound to date the pregnancy and asked if Brian wanted to see. I knew he would, so she went to get him and explained what had happened. He was also furious and said he felt like he had been mislead. I felt like it, too.

The ultrasound showed the baby was measuring two weeks behind and said it looked as though she didn’t have much brain matter. She quoted me a new price, lower because the baby was smaller and said we could reschedule for the next week. We met with the counselor and left. We wound up staying in Atlanta for the weekend, because we had made reservations for two nights, and checkout time had already passed.

More decisions had to be made. Did we want to travel back to Atlanta again to have the procedure done? Or should we try to find other options? I was beginning to think we just let nature take its course and let her go on her own.

We met with the doctor on Aug. 5, the day before my 31st birthday. She told us we could travel to Louisville, KY or Arkansas, but no other place was closer. Our specialist had called Atlanta to complain and had decided not to send any more patients there. She also said she hadn’t known it was an abortion clinic, or she would never have sent us there. I told her we had decided to carry to term, and she agreed it was our best option. She listened to Jenna’s heartbeat, which was going strong. We had only had one appointment where her heart rate was low, and I believe she might have been sleeping then. Her strong heartbeat showed us how stubborn she was, and we decided to set up an appointment for the next Monday to see what birth defects Jenna had. I would be going back to the specialist.

Our appointment was Aug. 11, and Brian couldn’t go with me. He had to take Tessa to her kindergarten check-up, so I asked my aunt to go with me. I’m glad I did. The ultrasound technician was so nice and chatty. When she moved the wand over my tummy, I knew something was wrong. Jenna was not moving. The ultrasound tech said, “Sweetie, I’m so sorry but there is no heartbeat.”

I just cried a little. I think I was in shock. I had been preparing myself to go to term, and she had already died. I was sad, but it hadn’t really hit me yet. I kept thinking she was no longer in pain and would never be. Our specialist sent us back to my doctor, who told me to come in later that night to be induced. I wanted to do it right away because Tessa started kindergarten on Friday, and I wanted to be there for her. Another aunt said she would keep Tessa, and we arrived at the hospital at 8 p.m.

Our first nurse, Dawn, was wonderful. She explained what was going to happen. They would insert cytotec pills every six hours, which would cause me to dilate. I could have as much pain medicine as I needed, and if I needed an epidural, I could have one, too. The cytotec insertion was very painful, and I began having cramps soon. They gave an Ambien to help me sleep, and some Dilaudid for pain. At 5:30 a.m., I received my epidural.

Brian was wonderful through all of this. At 7 a.m., our second nurse came on shift. Her name was Marta, and like our first nurse, she was an angel. Jenna was coming feet first, and Marta said I would have to dilate farther to deliver her. She also told us it would take awhile. She said if she had been coming in head first like she was supposed to, she would have been born much sooner.My mom came to the hospital, and I sent Brian home to take care of some business that had to be done before Tessa could start school. I knew he wouldn’t be able to handle it all emotionally, and I also knew he didn’t want to see Jenna after she was born.

Around 11:30 a.m., I felt something and called for the nurse, who checked and said Jenna was on her way. The doctor came in, and at 11:50 a.m., Jenna Grace was born. She weighed 4.4 ounces and was a little over 6 inches long, which was very small for gestation, normal for a Trisomy 18 baby. The delivery process had been rough on her body. Because her skull hadn’t fully formed and she had little brain matter, her little head had collapsed before delivery. No mother should ever have to see something like that. She had all 10 fingers, and they weren’t clenched like many Trisomy 18 babies. She had one clubbed foot, but all 10 toes where there. Even though her face was disfigured because of the damage, I could tell she would have had Tessa’s nose.

We have pictures, but they aren’t very good. She was almost 21 weeks when she was born.We had a memorial service Aug. 24, 2008. It was well attended by my family. The preacher who spoke mentioned my granny and said she was taking every opportunity to rock Jenna Grace in Heaven. My sister-in-law also drew a special picture for me. She asked me a few weeks before for pictures of Granny’s hands, which I had because I’ve always loved hands. She drew Granny’s hand reaching down to a sleeping angel baby. I love it and have it on my end table.

I miss my little girl every day, and I wish I could have had five minutes with her alive. Of course, I know if I had had those five minutes, I would have wished for five minutes more and five more minutes for all of time. She is no longer in pain and will never know it, so I can be happy about that but sad she is gone.

I am angry

Elisabeth Kubler-Ross outlined the five stages of grief in her 1969 book, "On Death and Dying." The stages are denial, anger, bargaining, depression and acceptance.

According to her, not everyone who is grieving will go through all five stages. People also don't go through them in particular order. I think I went through the bargaining phase early on. I can't think how many times I said, "Please let us have a miracle; I'll do anything for a miracle." Of course, we didn't get our miracle.

I also went through a period of denial. This happened after we weren't able to end the pregnancy early. Very often, I thought, "I would have been able to terminate if she had really been sick. That was a sign that we're going to get a miracle, and she'll be fine." Of course, I found out Aug. 11 this wasn't the case. She had passed on her own.

I'm still in the middle of a depression, but it's not as much as what I'm feeling now. I'm angry. I'm furious. I'm mad. I want to pitch a fit, punch holes in the hall, break plates, hit someone, but I know I can't. I'm so confused about what I'm angry about. Why did she have to have Trisomy 18? Why my baby? Why not the baby of some crackhead whore who shouldn't have been pregnant in the first place? After I think that one, I then feel guilty, which just makes me even angrier.

I am also angry I wasn't able to end my pregnancy. If a woman simply doesn't want a baby, she can go to any clinic in the state to have it done, as long as it's in the first trimester. Most prenatal testing is done after the first trimester, especially amniocentesis, which is one of the most accurate ones. I wanted to spare my baby of a life of pain, but I had to travel out of state to do it, had to slip away as though I was doing something wrong. I felt I was being punished. Where was my choice in all of this? Whenever I hear someone say they are supporting McCain and Palin in the election, I just want to shout at them. I want to yell, "Because of politicians like the two of them, I didn't have a choice. I had to take the chance of subjecting a much loved and much wanted baby to a life of pain."

I'm angry when I read about pro-life stances. If I had ended my pregnancy due to the Trisomy 18, it would not have affected anyone else except for my immediate family members, who all supported me in my decision. Where was my choice? Politicians and pro-lifer's took away that choice. They had a choice, the choice not to have an abortion. My rights were taken away from me.

And, I'm angry I had no control over my situation. I wasn't able to make choices that were right for my family. Decisions were taken out of my hands and put into those of the lawmakers. Why and how is this right? We are more humane to our animals than we are to our children and the sick. I'm angry about that as well.

Another part of me is angry I wasn't able to carry to term. This is where confusion reigns. Why should I be angry that I didn't carry to term when I wanted to end my pregnancy early? I don't know why, but I am. If I couldn't end it, I wanted to see her as a full-term baby and have that extra time with her. Even a minute would have been better than nothing. But, if I wanted to end the pregnancy early, why am I feeling this way? Even the confusion is making me angry.

I'm angry December won't be a good month for me. It was already ruined because of granny dying, but I thought Jenna's arrival would make things better. Now, I don't know how I'm going to get through Christmas, with everyone happy to be celebrating the season and me thinking of all I lost when Jenna died. And I know I'll have to put on a happy face for everyone else when I'm dying inside, and I'm angry about that, too.

I'm angry people actually think they know what they would do in this situation when they've never been there. I'm tired of hearing, "I would just let God handle it," or "I think I would carry to term so I could meet her." Those statements make me angry. Anger fills me, and I have to fight not to shout at them. They have no clue what they would do, none at all, not until they've been there.

No one wants to talk about Jenna or my loss, and this makes me angry, too. I want to talk about it. Talking about it makes me feel better. When I talk about her, I'm able to keep her memory alive. Tessa told me yesterday, "I want a little brother or a sister."

I said, "You have a sister, Jenna. Remember?"

And, she said, "But, I didn't get to meet her. I want one here."

It makes me angry that she'll probably forget about her little sister and might not even remember this time. I'm angry she didn't get to meet her sister.

I hate feeling angry. Being angry over all these things just make me feel even angrier. I'm usually the happy-go-lucky person who looks for the best in everything but not lately. Lately, all I can see is the anger. It even clouds the good things, the going back to school, the weight loss. I want to be out of this stage soon.

Making a decision

For the past few months, Brian and I have been talking about me going back to school to receive my teaching credentials. I still want to go back to school, but I have changed my mind about what I want to do.

I lack two semesters having my degree in psychology. I was good at it and wanted to be a therapist, but I didn't want to have to go to graduate school in order to find a job. That's why I chose journalism.

Now, I think I want to go back and finish and then get my master's degree. It probably won't take any longer than it would to get my teaching credentials, because I would have to have several different classes before I can get into the program at Motlow, our two year college which has contracted with Tennessee Tech to provide the teaching program.

I want to counsel women who have lost a child at any stage. I think Jenna is telling me this is what I need to do. Even my counselor said I would make a good therapist.

However, there is a problem. I hate Middle Tennessee State University, where I would have to go to finish my degree. It's an awful place, and I hated every minute that I went there. I have decided I'm going to check out online colleges to see if I can get my degree there. I'm actually excited about going back to school.

Four weeks today

I hate Tuesdays. For the past four weeks, they have been awful days for me. It's just a reminder of all I lost when Jenna died.

She died on a Tuesday, four weeks ago today, at 11:50 a.m. It will officially be one month Friday. I'll never forget the day she was born, looking at her tiny little fingers and tiny little toes. I still regret that I didn't hold her longer than what I did. It just hurt so bad, and seeing her the way she looked...it wasn't the memory of her that I wanted.

I admit that I'm feeling better every day. I don't feel like crying every single second of every day. Sometimes, I can even think of Jenna and smile, instead of crying. However, whenever I think of December and her due date, when I see a new baby, all the pain comes rushing back.

I don't want to forget her or for anyone else to forget her either. She was my baby, and she existed. It may not have been a long life or a full life or the life I wanted for her, but she was still here.

This post is really just to remember her today, four weeks since she was born.

Focusing on me

I decided to take the time between Jenna's loss and when we can actively try to conceive again to lose weigh. I'm excited to announce that I have lost 27 pounds.

I don't usually share my weight with people, because it's usually a lot more than they think because I carry it well. I started out at 266 in July, which meant I gained two pounds with Jenna and no more. I am now down to 239.

I bought a set of scales that will keep up with how much you have lost. I also have a chart on my refrigerator. I weigh each morning because if I did it once a week, I wouldn't be able to get used to the habit. I weigh myself and then write it on the chart. My first goal is to be down to 200 pounds, which is 66 pounds to lose. I'm almost halfway there.

I have been cutting out all my sugary drinks and eating smaller portions. I don't snack between meals anymore. I've been parking farther and farther away at work and when I go to the store. I've also been keeping my house extremely clean. I never knew housework was such good exercise.

Dr. McGowen said not to do any kind of aerobic activity for four weeks. It will be four weeks tomorrow since Jenna was delivered. Water aerobics is on Tuesday and Thursday night at our Rec Center, so I may go tomorrow night. I loved water aerobics, and I might get there a little early so I can swim for a bit before.

I'm also focusing on myself in other ways, too. I'm seeing a counselor to help me through my grief. She's helping a lot although I do feel emotionally drained after a session.

The other thing I did was cut my hair very short. I'm now 100 percent gray. I did it for a while before, but decided to color it back in January. Even though I'm only 31, I'm glad I've decided to be gray. It means I'm confident enough in myself to do it.

I've been having a problem with redness on my face, but it really didn't bother me. Now, I've discovered a regimen that is clearing it up, and my skin is starting to look really good for the first time in a while. I was my face with Baby Magic body wash and then lather on Aveeno Simply Smooth Moisturizing Cream. It diminishes fine lines and facial hair. My facial hair is pretty bad, due to me having PCOS. I pluck it, but the cream is working well, too.

My counselor says I'm focusing on all these things because it takes my mind off the loss. She says it's not totally a bad thing, as long as I am allowing myself to grieve, which I am doing. It just feels good to feel good about myself right now.

To help those with no choices

I've wanted to start a Web site support group for women who wanted to end their pregnancy early but couldn't for one reason or another. I wasn't really sure how to go about it, but I think I've found my solution.

The new www.babycenter.com allows anyone to create a board for whatever they want. That takes care of my hosting issues. I've also found someone who is willing to help me with it, as co-owner. She was in my situation, too, except her baby had Triploidy.

I've posted a message on the termination for medical reasons board looking for lurkers who might be in that situation. I'm hoping to get some responses from them. I'm also thinking of posting on the poor prenatal diagnosis boards, too.

I think this board could be for women who can't terminate due to state law, the inability to travel, financial reasons or because they are afraid of someone judging them. I don't want anyone to feel alone who hasn't been able to end a pregnancy with a poor prenatal diagnosis.

The time after a diagnosis is so painful and full of fear, and no one should feel alone while going through it. If you are reading this and would be interested, please leave me a message.

Regrets

I think most people can look back at their life and see where they might have some regrets. I know I do, especially with all the things that have happened over the past two months. I really wish I could look back at that time with no regrets, meaning I did everything to satisfy mine and Brian's needs, but I'm not sure I did.

We had promised we would take Tessa to the big ultrasound so she could see the baby. We never had the official big ultrasound; it was given to us to check for markers after the AFP test came back positive. At that point, Brian and I were so scared and nervous we didn't think we could handle having her there. Now, I wish Tessa could have gone with us to it. As it is, Jenna isn't totally real to Tessa. She knows she existed. She knows Jenna was in my tummy, but she had no concrete proof that Jenna was there. I wish she could have seen her moving on the ultrasound screen, to see her little sister playing in there, as she would never get to do outside the womb.

I regret ever having made that trip to Atlanta. I wanted to end the pregnancy, and I still wish I could have had that option. However, I wish the trip could have been a different clinic, where the women who have made the most difficult decision they will ever face can be pampered while they are being taken care of, but I don't see this kind of thing ever happening. The best thing about a place like that would be is that the only terminations to be done are for a poor pre-natal diagnosis, so the women who need this kind of place can go to it without having to mingle with the women who are happy to be getting rid of a pregnancy. I wish some place like that existed, and I regret I couldn't have it to be my experience.

I wish I had held her longer. The emotions were overwhelming me when the nurse handed her to me. I wanted her cleaned up before I held her. The nurse brought her wrapped in a blanket, which I was able to fold away to look at her. For about five minutes, I was able to admire her fingers (enough to see they weren't clenched as most Trisomy 18 babies) and her feet and toes. I got to count them. The longer I held her the more I felt like I didn't want to give her up; I wanted her there with me. My heart was screaming; it was hurting so bad. That's why I gave her back to the nurse, who promised to take good care of her. Now, I just miss holding her in my arms. They feel so empty.

I also regret that we weren't farther along when she left us. If I had been, Now I Lay Me Down to Sleep, an organization that comes in when a child over 25 weeks dies and takes pictures for the family, could have come for us. They clean up the photographs, often changing the color to black and white. Someone told me to go ahead and a call them, especially when I found out my photographer friend wasn't available, because NILMDTS will come take some pictures under 25 weeks. I didn't do it, because I didn't want to inconvenience anyone. Now, all I have are the photographs they took at the hospital, which are kind of blurry, and the ones my aunt took, which show all of the birth defects she suffered and damage caused at birth. There isn't too much that could be done to those.

I guess I'm going to live with these regrets all of my life. Right now, my arms feel so empty, and I'm afraid they might always. Even though I didn't have anything to do with her having Trisomy 18, I still regret that she had it. I wish I was now 24 weeks pregnant, getting bigger, having the glucose test for gestational diabetes, getting closer and closer to my due date.

Just a clarification

In my last post, I said that Down Syndrome is a fatal pre-natal diagnosis. Someone rightfully pointed out to me that it isn't necessarily fatal.

I totally agree with that poster. However, Down Syndrome people can have heart disorders, which are fatal. Many of these disorders require a heart transplant, and most doctors (and the transplant teams) will not give a heart to a Down Syndrome person. That's a shame in my opinion, because Down Syndrome people are loving, capable and just as deserving of medical care as anyone else.

So, even though it is not necessarily fatal, it can be, and honestly, even those who decide to end a Down Syndrome pregnancy without a fatal disorder should not be made to feel alone and helpless and without options.

I just want to help people and keep them from having those feelings.

Feeling alone and without choices?

Several weeks ago, when I first found out Jenna was sick, I was given a short list of options. I could travel to Atlanta or wait it out. What kind of options were those?

After the fiasco in Atlanta, I felt even more alone and without choices. Where were the people like me who wished they could spare their child the pain and suffering of Trisomy 18 or some other fatal diagnosis but couldn't because of state law? I wanted to talk to them because I felt so alone, but I couldn't find anyone. Most people who wanted to end their pregnancy early were able to, and the same went for those who were carrying to term.

But, me, I wasn't doing what I wanted. I was floating in a sea of never ending confusion and guilt, confusion because I wanted to end the pregnancy to keep Jenna from suffering and guilt because I wanted to end a much-wanted pregnancy. Where were my choices? Isn't the freedom of choice having the choice to decide between having an abortion and the choice not to?

I don't ever want anyone to have to go through that again. No one should ever feel that alone and helpless, as though their hands are tied behind their backs and something is being forced down their throat.

I'm thinking of starting a Web site for people who were in my situation. However, I don't know how many women have actually been there. If you are reading this and have been in this position, please let me know. I really need to know how many people would support a board like this. It wouldn't have to be just for Trisomy 18; it could include any fatal pre-natal diagnosis, such as Triploidy, Hypoplastic Left Heart Syndrome, Down Syndrome, amniotic band syndrome, etc.

So, if you have ever wanted to end a pregnancy because of a fatal pre-natal diagnosis but couldn't due to state law, insurance issues, travel issues, etc., please, please let me know. I'm really interested in doing something to keep women like us from feeling so alone.

I wish I didn't worry

I have always been a worrier. When Tessa was a baby, I checked on her all the time. We even co-slept because her bedroom was at the other side of the house, and I was so scared someone would come in and get her. Over the last five years, I have relaxed somewhat and will even allow her to play outside by herself.

All that has changed now. My worries have come back full-fold since Jenna was diagnosed and died from Trisomy 18. I now know bad things do happen, and the worry isn't for nothing.

Today was Tessa's first full day of kindergarten. She went for three half days before the school system closed for the National Tennessee Walking Horse Celebration. I didn't cry too much on her first day of school. I think I was still numb from losing Jenna, but this morning, I cried.

It was so hard turning her over to a stranger, a stranger who is going to be with her all day long. My aunt kept her all day until she started preschool, and then she stayed there after her half day at preschool was over. She has never been kept for that length of time by anyone other than family.

I know they won't watch her and love her like my family and I have. I knew that about preschool, too, but that was before Trisomy 18 and Jenna's death. It also wasn't all day.

The worst part of it is she has to ride the bus home from school. School buses don't have car seats or seat belts, and she's still a tiny little thing. Also, we live on a cul-de-sac, and the bus has no room to turn around if it comes down our road. So, she will have to get off the bus, walk in front of it on a large highway and walk down to my aunt's house, which is all the way at the end of the road.

Our neighbor's son rides the bus home, and I told her this morning to hold his and be sure to look both ways. I'm terrified of her getting hit by a car, but she told me last night, "Don't worry, momma. I'll be fine. Don't you trust me?"

I told her I trusted her but not the drivers on the road. I wish I could be one of those parents who don't worry, but I will never be that way, not since Trisomy 18 cast a cloud over our home.