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Thursday, April 30, 2009

More than one Trisomy 18 baby?

A few weeks ago, I was asked to be one of the group owners for the private second and third trimester loss boards. One of the other group owners graciously asked me, and I accepted.

Lately, she's had to refer a couple of women to me who have had a baby diagnosed with Trisomy 18. I don't mind, because I really want to welcome them and keep them from feeling so alone with this diagnosis.

The one she referred me to tonight just received a diagnosis for the second time. That makes me so worried.

We were told Jenna's case was a fluke. Flukes can happen twice. Now, I just have more to be paranoid about. Even though it's more dangerous, the CVS is better and better, just so I can get rid of this paranoia.

Tuesday, April 28, 2009

Next appointment Friday

Friday is our first real appointment with the regular OB. I love Dr. McGowen. She was wonderful during our whole experience with Jenna, and even though she went on vacation the day we found out Jenna had died, she came up to check on me before they left and called to check on me later. I know she is going to be super excited for us.

I am so hoping we will be able to hear the heartbeat. I was about 11 weeks when we had our first real appointment with Jenna, and we were able to hear the heartbeat then. I can't remember how far along I was on our first appointment with Tessa, but I do remember I heard the heartbeat then. I'll be nine weeks, four days, and I'm overweight. Do you think it's possible to hear it that early?

Brian can't go with me this time. We made the appointment when he was still off on Fridays, but now they've changed his days off to Sunday and Monday. I didn't want to cancel the appointment because I was afraid it would push it back too much, and I didn't want to wait that long. I'm trying to decide if I want to see if my mom can go with me just in case something goes wrong or maybe I should just put on my big girl panties and deal with it.

I am getting so nervous about this appointment. I was like that just before we went in for our last ultrasound. When we didn't see anything abdominally, my heart stopped and my breath caught in my throat. I don't think I took another breath until we did it transvaginally, and she saw the heart beat. I started crying. I know I'll probably do the same Friday if we hear the heartbeat then.

I've been thinking a lot about this pregnancy compared to the one with Jenna. The AFP test measures your HCG levels, and I know a higher than normal indicates Down Syndrome, while a lower than normal indicates Trisomy 13 or 18. A lower HCG level would account for my lack of symptoms with Jenna. Well, not exactly lack of symptoms, because I did feel a little nauseaus and exhaustion with Jenna but nothing major. My beta numbers also started out really low with her, too.

This time, I'm extremely nauseaus. I even threw up in a parking lot the other night after we went to supper with our family. I take a nap nearly every afternoon and go to sleep pretty early (or early for me at least, I'm a night owl). My boobs have gone up a size and are now very, very tender. I didn't do any of that with Jenna or at least not to this extent.

I'll admit it gets my hopes up that everything is going to be ok this time, but not enough that I'm able to let go of all my paranoia. Hopefully, Friday's appointment and then the Nuchal Fold Test will help ease even more of it.

Sunday, April 26, 2009

Shouldn't be here

I've just been thinking lately. If Jenna hadn't had Trisomy 18 and had been born and lived, this baby I'm carrying now wouldn't be here. I can say that with certainty because we did not want more than two children.

I am overjoyed we are pregnant again. Yesterday, I went to the store to get some things for our camping trip and made a stop in the infant section. I can't wait until I can start buying things for this baby. I want him or her here. We are talking about names, what color we are going to paint the nursery, whether I'm going to keep my part time job after he or she is born, when I'm going to start back to school, etc. I can't wait for November to be here.

But, in the back of my mind, I keep wondering if I'm somehow hurting Jenna's memory by being happy that this baby is coming. After all, if Jenna was alive, I would be enjoying my fourth month old now and not waiting on a new baby to come in December. How can I reconcile my happiness over the new baby with my sadness over losing Jenna?

And then, I think about years from now, when I'm explaining to this baby about Jenna. Surely, he or she is going to realize s/he wouldn't be here if Jenna had lived. How is that going to affect him or her? I don't want them to feel like second best, because I don't feel that way at all.

It is so confusing feeling this way. I already love this new baby so much, but it feels funny to know s/he wouldn't be here if it wasn't for Jenna's death. I think I'm going to have to keep that one a secret from him or her in the future.

Thursday, April 23, 2009

Wishing time away

I know we aren't supposed to want time to hurry, but I can't help it. I honestly hate the first trimester, and I wish I could at least get to 11 weeks so I can have the Nuchal Fold test done.

I want to be in the second trimester soon so I can do the AFP test and then an amnio if that's what we decide to do.

I want it to be the end of November so I can have this baby in my arms and know all is well.

I know that if something happens to this baby and pregnancy, I will regret wishing the time away, but for right now, I want it to hurry up, just so I can have the reassurance that this baby is healthy. I know knowing this little bean is healthy isn't going to stop things from going wrong, but I will be able to breathe easier when I do know.

Sunday, April 19, 2009

Sorry for so long between updates

I've been filling in for someone at my part-time job, so I've actually been working a lot more than I did before. I feel pretty good when I get up in the mornings, but by late afternoon when I get off from work, I feel terrible.

I am exhausted and extremely nauseaus, but I haven't been able to throw up. I don't mind the nausea at all. It helps me feel as though the pregnancy is going the way it should. I didn't have a lot of nausea with Jenna, except if I didn't eat every few hours, so it definitly is reassuring.

The other night, I was at my aunt's house, so Tessa could play with my cousin's little girl. My cousin brought in Kentucky Fried Chicken, and the smell of it made me so nauseaus, I stayed in the living room. I sat down in the chair, closed my eyes because sometimes that helps, and fell asleep. I guess that just shows how exhausted I am.

So, when I do have time to blog, I don't feel like it, and when I do feel like it, I don't have time.

I know it's way too early to feel anything, but I have been feeling something in the general vicinity of where the baby is. Someone posted on my birth board about maybe we can't feel the baby yet but maybe the movements the baby makes sets the motions for other things to move and we can feel that. I don't know. It might just be wishful thinking.

Friday, April 10, 2009

We saw a heartbeat and a tornado

I don't have a lot of time to write now. We are meeting my family for supper tonight, but in case people are wanting and waiting for an update, I thought I would a little update.

We saw the heartbeat, 125 bpm. The baby is measuring at six weeks, one day, so just about right.

A tornado also touched down not very far from the office where we had the appointment.

I'll update more later, but we are so happy.

Thursday, April 9, 2009

So nervous

We go back to the specialist tomorrow for another ultrasound. I looked at the calendar last night, and I'm pretty sure I ovualated March 9. That would put me at six weeks, four days tomorrow. My ticker is a little off, but I'll wait until we can get a date from the ultrasound before I change it.

I am so nervous about this ultrasound. I want to go in and see that tiny little heart flickering away. What about if it isn't beating? Does that mean the pregnancy isn't viable? I'm not sure what I would do at that point. I do know that if this pregnancy ends badly, I'm finished. I can't put myself through this again.

I keep thinking about all the things we have to do tomorrow. I have to go get dye and eggs for Easter, so we can color them on Saturday. I have to get a dress for myself and some shoes for Tessa. My mom is insisting I go to church on Easter, and even though I don't really want to go, I'm going to do it for her.

Anyway, I keep thinking, what if I find out something is wrong? How am I going to be able to cope and do that, too? I also have to cover something Monday night for the newspaper, and I'm wondering if something bad happens will I be up for that. They are already short-handed because the Lifestyles Editor has to be out.

I'm trying to think positive. The nausea was so bad tonight that I had to take a phenergran. I feel like I could sleep for days, and I have to pee every five minutes. My boobs are also sore. But, I know you can have symptoms, and the pregnancy still not be viable.

I guess I'm rambling. I'm exhausted, a little drunk from the phenergran, but I'm writing because I can't sleep. I know I can get through this, but it's so tough waiting. Please keep me in your thoughts tomorrow morning.

Monday, April 6, 2009

More about the specialist appointment

When Dr. Lombardo stuck his head in the room, we were in the middle of a transvaginal ultrasound. He introduced himself to me and I to him, while I was lying on that table, naked and being examined. Talk about uncomfortable.

Like I said in my previous post, the ultrasound tech was the same one who did our level 2 and our amnio ultrasounds. She told us that she was so happy to see us. She also said, "We all remember you and felt so bad for you. We are so glad to see you back."

He reassured me that the during his 20 years of practicing medicine, he has never had a patient with two chromosomally abnormal children, especially a trisomy, unless the parents had some sort of genetic problem. That made me feel a little better.

He was also talked about Jenna. He said, "Your little one had a lot of problems. I reviewed the final ultrasound. She had no chance whatsoever."

Even though I have never really doubted my decision to terminate (even though I do regret that awful trip to Atlanta and not being able to terminate), his words made me feel so much better about that decision.

I'm thinking I might ask what problems she had. I want to know exactly. We do know about her brain not forming, along with her skull, the cystic hygroma, the clubbed foot and the kidneys. I wonder if she had more. I know it all comes down to Trisomy 18, but I want details about it. Do you think it would be bad of me to ask more about it? Will it hurt me more to know?

I was supposed to go down to Dr. McGowen's office for my ultrasound this Friday. They couldn't decide if they wanted me to see the doctor afterward or not. At first, the nurse said no, so they made the appointment. When I asked how long it was going to take to get the results, the nurse said it would be Monday, and then said, "Well, if they see a heartbeat, the tech can tell you. If they don't, they can't."

I guess she could tell by the look on my face that I couldn't wait until Monday to know if something was wrong or not, so she said, "Call down there and get her into see Dr. McGowen afterward."

The receptionist called, but Dr. McGowen was going to be out that Friday. So, they decided to scan me there. When asked if I would be able to get the results on Friday, the ultrasound tech said, "You'll have your results. Don't worry. You'll have them even if the doctor isn't here."

She walked off, and the receptionist whispered to us, "She's trying to tell you that she'll give you the results without telling you that."

Sounds like I'm in pretty good hands, doesn't it?

Friday, April 3, 2009

Specialist appointment today

We did both an abdominal and transvaginal ultrasound today. It was the same lady who did our level 2 ultrasound with Jenna and also the ultrasound during our amnio.

By my last period, I would be six weeks and one day. If I go by when I think I might have ovulated, I'm at 5 weeks, 4 days or 5 weeks, 3 days. We saw a gestational sac and the yolk sac, but no fetal pole. The ultrasound tech said it was just too early to get a crown to rump length. Is that the fetal pole?

My specialist, who is different than who we saw the last time but in the same office, came into introduce himself to me. I really, really liked him. He took a look at the screen (we were in the middle of the transvaginal ultrasound) and said, "Wow, you are still really early."

When the ultrasound was over, the tech stuck her head in his office and told him what we saw, and he said, "Have her come in in a week to scan for viability."

Him saying that makes me nervous. Why couldn't he have said come back in a week to do another scan? Why did he have to say viability? I asked the tech if that meant he thought something wrong, and she said no, just that it was too early to tell anything.

I looked up an ultrasound pic of 5 weeks, 4 days, and it looks exactly like what we saw. But, I'm still so nervous. I hate this. I'm still having symptoms, and she said my cervix was long and closed, which was good.

So, please share some stories with me and tell me what you saw.

Thursday, April 2, 2009

Seeing the specialist tomorrow

I'm not working tomorrow because my appointment is at 10:30. I've had to tell the editor at the newspaper where I'm working part time that I was pregnant. He was really supportive of me (he knows a little about what we went through the last time), and I told him I would have a ton of doctor's appointments in the next few weeks.

He said his sister had a few complicated pregnancies, including one with twins, so he completely understands. I'm very happy about it, and I'm glad I told him so I don't have to keep coming up with excuses about why I need to be out.

So, tomorrow we will go to see the maternal fetal medical specialist. I don't know which one we will be seeing as Dr. Spiers is no longer there. He's who we dealt with the last time, and he was wonderful to me. I can't remember who it was that we saw the day Jenna died, but he was nice to me, too. When he told me he was sorry about it, I told him that considering what she had, it was for the best. He agreed, and he also apologized for recommending the hellhole in Atlanta and said they wouldn't be sending anyone else there. He also said he would call the Dr. McGowen and the hospital to tell them to let me have any kind of pain medication any time I wanted it, that there was no need for me to suffer needlessly. If we see him, I'll be happy.

I don't know what the appointment will consist of either. I'm hoping for an ultrasound, but I know it will still be early to see a heartbeat. I do know we will be discussing our testing options. I'm not sure if I want to wait for the amnio, but I do know for sure that I want to have definitive testing done. I know our chances of our baby having Trisomy 18 again are one percent, but I don't really trust statistics anymore. I also know that I want to have an answer before 16 weeks. I can't go through what we did with Jenna, again, just waiting for her to die, so I need answers before the deadline for termination in this state.

If that makes me cold-hearted or bad or whatever, so be it. I just know what I can and can't take right now.

Tonight, we were watching the final episode of ER. I don't even know why I did that to myself. I cried all the way through it. At one point, when they were working on a baby, I looked over at DH, and he had his eyes covered. He said, "I just can't watch it. I just can't. I just want a healthy baby this time."

Please wish us luck tomorrow, even though I know we aren't going to find out anything. I'd just like to know my friends are thinking about me. I find it comforting, especially when not too many people in real life know yet.

Thinking of leaving my birth board on Baby Center

I signed up for the November 2009 birth board on Baby Center. I don't know how much longer I can stay there without screaming at someone or saying something rude.

I know there had been some drama on the board, but I missed all of that. A lot of what is driving me crazy is just little comments.

I keep hearing people talk about being out of the danger zone. Out of the danger zone? Really? In my opinion, there is never a safety zone during pregnancy. Things can go wrong from day one to the very end. I have an Internet friend who lost who her little girl due to her doctor allowing her to go too late in the pregnancy, so I'm well aware of how late bad things can happen.

Another thing I've heard is in regards to prenatal testing. Someone made the comment that they wouldn't get the testing done because, "We would keep the baby and love it anyway."

First of all, yes, I wanted to say goodbye early to Jenna. I loved her. I don't know if they know how insulting that comment is to women who decided to terminate a poor prenatal diagnosis pregnancy. Those who make that decision don't come to it because they don't love their baby or want a perfect baby. They do it because they love their child and don't want the child to suffer.

Also, I think most of the people are thinking Down Syndrome when it comes to poor prenatal diagnosis. It's not the only one out there. There are others, and I wish everyone knew about them, especially the ones that are fatal. I think being prepared is very important. I had time to prepare myself for Jenna's death, so I wasn't totally shocked when she went. It still hurt, but I believe it would have been worse if I hadn't seen it coming.

I also heard, "Mental retardation doesn't run in my family." So freaking what? It doesn't run in my family either. I'm sure it doesn't run in many people's family who have received a poor prenatal diagnosis. Most of the people in my family had never even heard of Trisomy 18 before. In most cases, chromosomal abnormalities are a fluke and aren't passed family member to family member.

Someone else said amnios are so dangerous. I can understand thinking that way if you have a history of miscarriage or are at risk for one anyway, but in reality, amniocentesis are safe. My doctor told me the risk is down to one in 1,600 and can be even less depending on how many the doctor has performed without incident. It is safe.

I've heard over and over again that the tests aren't accurate. They're right; they aren't accurate. But, if you get a positive on one of those, it will lead to other tests, which are more accurate.

And, last but not least, a couple of people mentioned that they thought this was just way for doctors to make money. Really? You think doctors want to needlessly worry pregnant women just to line their pockets with money? If I thought that about my doctor, I would be finding another doctor.

I know I'm venting, but I can't help it. It just drives me crazy.

Wednesday, April 1, 2009

One year ago

Friday will mark the one year date of us conceiving Jenna. It was the start of series of life changing events for me.

I never thought I would lose a child. Whenever I became pregnant, I always said "I'm going to have a baby," instead of "I'm pregnant." Now, I have to say, "I'm pregnant," because I know a pregnancy doesn't always end with a living baby.

I found out this year that I'm stronger than I ever thought. I don't feel it's bragging to say that anymore. I survived more than most people ever even think about, and I haven't lost my mind yet. I'm still here, still pushing ahead and finding the good in the world.

I found out that one person's story can change minds, and it is our duty to share our stories. I'm not scared to tell people anymore about my opinions at all.

I never realized how much you could miss someone that was never a living breathing being in my life. I already love this little bean that I'm carrying, and I know I wouldn't have her/him without Jenna passing, but I still wish every day that she was here.

Friday, one year to the date Jenna was conceived, we will have our first appointment with the specialist, and I know she and my granny are watching over us, wherever they are.

My mom guessed it

Today, after I finished at my part-time job, I had to go to Wal-Mart to pick up a few things. My mom works there (she's been there for nearly 25 years. I don't know how she's done it), and she saw me. We were talking, and I started feeling nauseaus. I guess I was even turning green.

She guessed that I was pregnant. She said she had been thinking that I was because I was kind of secretative about my doctor's appointment last week. I told her we were planning to wait until we had the testing done, and she said she just knew everything was going to go all right this time.

Of course, she said that last time, too. She truly believed Jenna wouldn't have Trisomy 18. In fact, when I called her to tell her the news, I said, "Momma, she has it."

And her words were, "Who has what?" She just did't allow herself to even think about a positive diagnosis.

I've told her not to tell anyone, and she better not. Of course, she has a huge mouth, so I'm expecting the whole family to know by the weekend.

But, I've been thinking. What does it matter if everyone knows? It's not going to stop something from happening. This baby is either going to have Trisomy 18, or s/he's not. The truth is, there is nothing I can do to affect the outcome of that now. So, what does it matter if I tell people? I don't really believe in jinxing something.