Going to Atlanta

Last week, when Dr. M called to give me the news of the FISH results, she said I could do labor and delivery at a hospital in Nashville. She informed me that I wouldn't be able to do it at the hospital in Murfreesboro because they are owned by St. Thomas, a Catholic affiliate.

What she didn't know was that the hospitals in Nashville had decided to stop offering this to mothers who NEED to end the pregnancy early due to a fetal anomoly. It had been a while since she had had a patient whose baby had Trisomy 18 and was going to terminate, and that patient was able to go to Nashville.

When we met with her on Tuesday to discuss the full results, she then informed us of this. We could have gone to an abortion clinic in Nashville, but we would have been faced with a group of women who WANTED to abort. I just don't think I could handle that, and Dr. M didn't think I should have to. She suggested a place in Atlanta.

This place offers their services to any woman, but they have a special program just for women who are needing to end their pregnancy early due to a fetal problem. I think this is a good thing, even though I still feel like we are sneaking away to do something wrong.

Here is what I'm upset about. When I called to make my appointment, I was asked if I had Medicaid. When I told them no, private insurance, I was informed they didn't take it. I would have to pay out of pocket and submit a claim to my insurance company. When I called my insurance company, they informed me I would have to pay out of pocket for it. I asked if I could appeal, and she said yes, but it wouldn't do any good.

The last thing a woman needs when she is going through this is to worry about payment. She also shouldn't have to worry about going to a clinic where she will be met with women who are happy about ending their pregnancy. Maybe I should start a non-profit up just to help women in this situation. We are making a heart-breaking decision. We shouldn't have to worry about paying for it or about seeing a reminder of someone giving up something we want more than anything.

Bad news

I have not posted since I had the amniocentesis done. I just didn't have it in me. Last Wednesday, we found out that the initial FSH results showed Trisomy 18. The full results came back the same. Our precious baby girl has this terrible disorder.

We decided we had to give her a name right away. I said something about Mary Grace, but "T" said she didn't like it. She liked Jenna Grace better, so that is what her name will be. I feel like she will never get to know her sister, so this may be one way she can feel close to her.

We spoke to our ob/gyn yesterday. She told us the baby will be severely affected by the Trisomy 18. She has clubbed feet and the cystic hygroma had grown since the first level 2 ultrasound. My amniotic fluid is very low, indicating a problem with her kidneys. She will suffer if she makes it through birth.

I just can't do that to a child of mine. I can't bring her into the world, which is already hard enough, only to hurt and be in pain and never be able to understand why she is hurting. It isn't fair to her, and it's not fair to "B" and I or to "T".

I wish I had the strength to carry to term, but I don't. I'm not that strong. Every kick is a cruel reminder that I'm not going to go home with a child in December, that she will never grow up and never be whole. How can I stand that for the next five months? I can't do it. It would drive me crazy.

I have agonized and agonized over this decision. I'm not sleeping well at all. I wake up, and the first thing I think of is my baby and whether she is still alive or not. If I don't feel her move, I wonder the same thing. I know I can't do this for the next five months.

So, we are ending the pregnancy early. I hate the word terminate or abortion. To me, that implies that this is something we wanted to do, that we had a choice. We don't, not for us. We would not be ending this pregnancy if this disease was compatible with life, but it's not.

I will have to travel to Atlanta, which is whole other post in itself. I will write more about that later.

I just wanted to say that right now, I need support, not judgment. Even those who don't agree with what I'm doing have to know that I'm doing this out of love for my child and that it hurts me to end a much wanted pregnancy.

Missing my granny

We've been really lucky in my family. No one in my generation has ever lost a baby. None of my mother's siblings ever lost a child either. Her first cousin's little girl died of a brain tumor, but that was several years before I was born.

My granny, however, lost two. Her first-born son, Ronnie, died due to a heart defect. Back then, they called them blue babies. He had a hole in his heart, and in the 1940s, medical technology wasn't modern enough to correct it. She told me many times about him, about his birth, how they discovered it, and the day he died. He didn't really die from the hole in his heart. Instead, he contracted pneumonia, and she tried to get him to a doctor to help him. But, even if she had, he had no hope. She found out not long after he died that she was pregnant again -- with my uncle. Losing Ronnie broke her heart, but she knew she had to go on for her older two daughters and the one she was carrying.

His death affected her for the rest of her life. She always worried over the boys in the family and their health. Not to say she didn't worry about us girls, but the boys, well, she thought they were fragile. I think she knew the girls took after her and were stubborn and strong.

She also lost her last baby, a little girl. She hadn't felt the baby move for a while and went to the doctor, who couldn't find the heartbeat and knew the baby had died. The cord wrapped around the baby's neck and killed her. Her doctor thought it would be better if Granny went into labor naturally and didn't take the baby. She carried the baby around, dead, for the next month. I admire her strength. I'm not sure I could do that. Of course, the baby was born still, and she grieved for her, too. Granny didn't mind talking to me about most things, but she never said much about this last baby. If she had lived, her name would have been Nancy Elizabeth, after Granny's momma.

If Granny was still here with us, I'm not sure what she would say to me. Honestly, she probably wouldn't have to say anything to me at all. She'd just take my hand and give it a squeeze or wrap her arms around me and just hold me. Sometimes no words are needed between two people who love each other. I really miss her hands and can sometimes still feel them holding mine. Hopefully, I'll be able to feel them Friday when I go for the amnio.

Here's my granny in better days before she got sick.

Getting so nervous

The closer we get to Friday, the more nervous I become. I have to admit that I'm scared of having the amnio done, not just because of the pain, but also because of some of the risks. I know they are minute, but what if this is a healthy pregnancy and I miscarriage? I would hate myself forever.

Also, as long as I haven't had the test, I can pretend that everything is ok. But, the not knowing is also driving me crazy. I want to start planning. I want to pick out things for the nursery. I want to buy equipment, and I want to pick a name. I just want to be happy in this pregnancy.

Even though this baby is very much wanted (and even though we did have help conceiving), I was in disbelief when I found out I was pregnant, and even scared to be honest. I had my moments of "What the hell was I thinking?" I mean, "T" is starting kindergarten, and we were beginning all over again with this baby. Now, I'm wondering if those thoughts caused this. I know, I know, it's stupid and it's just guilt, but I can't help it.

"B" says when he's dreamed of this baby, he's dreamed of a blank face. I haven't had any kind of intuition about whether this is a girl or a boy, even though I knew from the beginning that "T" was a girl. Both of these things scare me. I don't understand why Trisomy 18 has to exist at all.

No more research

For the past week, I have spent most of my spare time on the Internet reading stories about Trisomy 18 pregnancies and babies.

I've gone over stories, my heart breaking when there are similarities and jumping for joy when everything was different. I'm analyzing every little thing that is happening.

I've read stories about those who have terminated early or those who have induced early or those who have carried to term. I've cried over babies who have died and families who have been shattered by Trisomy 18.

So, I have decided no more research. I will still talk about it, still think about it, but I'm finished reading. It's doing me no good right now. I can't make any decisions about anything until I know one way or another. Guessing just isn't going to do any good.

Hoping for the best

Although we are preparing for the worst, we are also hoping for the best. We have not told "T" about any of the problems. I don't want to tell her anything and put her through any pain when we don't know for sure.

We are still discussing names. We watched the movie Game Plan the other night, and "T" now likes Payton for a girl. "B" isn't too crazy about it, but I kind of like it, which is odd because I've been very into traditional names this pregnancy.

We are also going in the next few days to get "T" a new bed. The baby will use her bed, which is a convertible. "T" is going to get all new bedding, and we are going to take down her Dora wall hangings and probably do something with fairies or unicorns, even though she wants puppy bedding. But, she told me, "I don't care if the covers on the bed matches the stuff on the wall," so I will go with what she wants.

For the past two days, I've really been feeling the baby move a lot. Every time s/he does, I smile. To me, this is a good sign. I've read stories about Trisomy 18 pregnancies, and most of the women didn't feel the baby move until much, much later due to the small size. Many have also said their baby wasn't all that active, and this baby has been. I know nothing is 100 percent, and I probably shouldn't take it as a good sign, but I do. I guess I need all the positives I can right now.

But, in some ways, I feel stuck. I'm afraid to think ahead because I don't know what will happen with this pregnancy. I don't want to get my hopes up and feel so positive about it all, when it could all turn out to be very negative. If I was to think completely positive about all of this and the worst possible news came back, I think I would fall apart. So, even though I'm hoping for the best, I still know the worst could come.

Preparing for the worst

Although B and I have talked about what we will do if the baby does have Trisomy 18, we have not made any decisions. We are discussing it and want to make the best possible decision for the baby and for our family if it comes to that. I am hoping for the best, but preparing for the worst, and maybe someone is going through this right now, will come by my blog and see they are not alone in the decisions they may have to make.

From my research, I have come up with three possible scenarios as to what we could do. The first is to terminate the pregnancy through a D&E, which stands for dilation and evacuation. This removes the contents of the uterus. We would probably be too far along to do a D&C, which stands for dilation and curettage. This is basically what an abortion entails, although that word hurts my heart, for abortion, to me, signifies an unwanted child, and this child was wanted before s/he was ever even conceived. With this option, we would not be able to see the baby.

Another option is to end the pregnancy through an induction. From what I've read, this involves inserting medicine into the cervix to cause it to dilate, just as they would for any induction. The baby is delivered, but most of the time, has passed away before being delivered. We would get to spend some time with our baby and say goodbye. Our families would also be able to visit to see the baby. However, if we wished, we could also choose not to see the baby. I don't know if I would want to see the baby or not. Out of everything I've read, not one regretted seeing their baby, but plenty have regretted not seeing him/her.

The last option is to carry to term. The baby might not make it that far, meaning it could die before 38 weeks. Some Trisomy 18 babies don't survive labor and delivery, and some parents opt for a C-section to ease some of the trauma on the baby. From what I've read, people who carry to term sometimes get to spend a few hours or less with their baby before s/he passes away. Some even get days or weeks. Very few get months or years. With this option, if the baby does survive for a little while, they are able to make memories as families.

All of these options have downsides. I don't like any of them. Hopefully, the amnio will relieve our fears, and we won't have to even give this anymore thought.