Just wanted to talk...
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Thread: Just wanted to talk...

  1. #1
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    Default Just wanted to talk...

    Well my story is kind of long so I hope that I have the stamina to spit it out all at once. I probably don't though. Here goes nothing.

    My DH, Trey, and I were married when we were 20. We were each other's first bf/gf, kiss, love. We got together at 16 and just never parted. We bought our first house last summer and decided that we would like to start our family. We were both excited but held off for 9 months when the timing was a little better. I am a school teacher and wanted the timing to be a little better so that I could spend the maximum time at home.

    So we got pregnant on May 10th. I was charting and thought that our timing was off, so I didn't think that I was pregnant. I started getting awful cramps and figured that I was going to start. My sister told me to test when I had the cramps for three days with no sign of AF. So, on May 29th I tested and it showed a BFP almost instantly. I thought that I was reading the test wrong so I took it to DH and he couldn't figure it out either (damn cheap tests). So I finally figured it out, took another and called my mom and sister. They were both just as thrilled as Trey and me.

    I had the easiest first trimester. I was a little tired and was queasy a few times. I did have to see three doctors and it kinda peeved me. I was diagnosed with Systemic Lupus at 15. I had been seeing a rhuematologist since then. I had tried a whole slug of medications. Everything from arthritis meds, to steroids to an antimalarial medication. I have actually stayed on the antimalarial (Plaquenil) for 5 years. I do take the max dose and it works for me most of the time. Anyway, I was high risk because of lupus and I had to go see a perinatologist. So now I was up to seeing three doctors a month.

    The peri turned out the be a wonderful man. I really like and respect him. The first time that I saw him I got an u/s and I the tech took picture after picture. I thought that maybe it was normal, but a little alarm went off. He just measured too much. When the doc came in he told me he wasn't worried about the lupus. He had a ton of patients on plaquenil and their babies were fine. He did tell me that he was concerned about a pocket of fluid on the back of the babies neck. Then he went into an explanation that I hardly remember. I do remember asking him what this all meant. He told that there was about a 36% chance that the baby would be ok. He left the room for a minute to check with the genetic counselor about getting an appointment. I looked at Trey and lost it. I just started crying. I tried like hell to regain composure before the doctor got back, but I didn't do such a good job. We got an appointment for a few hours later to talk with Katherine, the genetic counselor. He told us to "hang in there" but the look in his eye told me that there was something very seriously wrong.

    We left the office and I lost it again on the way out to the car. There were children playing downstairs and it was more than I could handle. I started hyperventilating. It was awful. We sat in the parking garage for over an hour just sobbing. I called my mom and she could hardly understand me. Trey had to call work to tell them that he would be much later than he thought originally. I felt so shallow. My biggest concern before I went into the peri's office was that he would tell me that I was too fat. I would have given anything for him to call me a porker and then jump around the office doing the piggie dance.

    ..........have to finish later.........so tired

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    Ok, I'm back.

    So, after we got to the car I called my mom and sister and told them what was going on. My mom told me that she would be there for the meeting with the genetic counselor. I was glad that she would be there. We needed another set of ears. My mom brought my dad too and we all sat in with the genetic counselor. Her poor little office was pretty cramped. She told us that there were four major posibilities. It could be Turner Syndrome, Down Syndrome, Trisomy 13 or Trisomy 18. She went into detail and showed us pictures of the chromosomes and gave us stats and the whole lot. I don't remember too much honestly. We were both numb. We jumped right on the CVS. We also opted for the FISH test too because the results came back more quickly. We scheduled it for the next day.

    I'm not sure that I slept at all that night. It was torture. Every time that I woke up it was like hearing it all over again. I would wake up Trey and he would hold me and cry. The CVS wasn't until 2:00 the next day and I barely made it with my sanity intact. There we all were (me, Trey, my mom, my dad, and my MIL) in the room with the doctor and two nurses. I was pretty packed. The procedure wasn't that back. They numbed me and I got to watch the whole thing on the u/s. I got to see her again and she was wiggling around. I just couldn't believe that there could be something wrong with her. She was all curled in a little ball (I think that she knew a big needle was coming!!!).

    We were told that they would have the result of the CVS on that Friday or on the following Monday. The wait was torture. I can't even describe how awful it was. We did finally get the call on the following Monday. It figures I took that moment to go to the bathroom. My mom had taken the day off to stay with me and I practically ripped the phone from her hand. The genetic counselor was very straightforward (thank God) and told us right away. She had trisomy 13. I got very dizzy and leaned over the counter. I couldn't speak and had to get off of the phone. I told my mom and she called Trey to tell him to come home. I never thought that it would be bad. I just knew (and prayed) that the worst it would be was Turner's. I felt that I could deal with that. T13 hit me by complete surprise.

    More later..............

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    Telling Trey was awful. I called him on the way home to make sure that he was driving safely. The thought of him getting hurt right then was too much to imagine. He got there, I met him in the garage and I told him as quickly as I could. He knew it was bad, but he wasn't as obsessed with research as I was. I showed him the website and I think that it hit him then. My mom called everyone for us to let them know what was going on. Thank God for her. I sent out an e-mail to the friends that I had been in contact with. I could not call them and I knew that they were all waiting for the news. Honestly I don't remember much of what happened next. I know I called the genetic counselor to ask her some more questions. She said that there was an 80% chance of miscarriage and an 80% chance that the baby wouldn't make it past one month and she told us that it was a girl. I asked her what most people did in our situation and she told us that most choose to terminate.

    I didn't cry much that day. I'm not sure why. I don't know if it was shock, or if I was numb or what. The following days were hell though. Trey took the rest of the week off of work to stay at home with me.

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    We had a huge decision to make. I had no idea what to do: continue or terminate.......

    That was all that was on my mind I agonized over it for days. I asked people what they would do. I asked people what they thought I should do. My family told me that it would be easiest on me to end it. They thought that I could start healing. At one point I was almost convinced that I should terminate. People told me that there was no way that God could hold it against me. I just didn't know. I prayed night and day for an answer. One morning I woke up and I knew. I knew that I was going to keep my little girl. After I came to my decision I was so at peace. After all of this turmoil, peace. It was wonderful. I woke Trey up and told him that I was going to continue. This was my feeling on the situation. There was already so much stacked against her, how could I, her mother, be against her too? I couldn't. I told my family and they were supportive. I can completely understand why someone would end the pregnancy and I would NEVER judge them for it. It is agony waking up everyday wondering if this is the day that your child will die. Every time I see a healthy child I wonder why me? I hate feeling sorry for myself and I hate this neverending rollercoaster of emotions, but I thik that I would hate never seeing my little girl even more. So many people have told me that I chose the hard road. Was there an easy one?
    Trey stood behind me 100% percent. He embraced my decision. I was upset with him at first because he basically left it up to me. He wasn't so callous as to say,"You decide." But he told me that he would support me no matter what I wanted to do. I yelled at him and told him that was a cop out. I now understand that he felt that it was my body and more of my decision. He didn't want to tell me what to do. He is very glad that it is what I decided.
    One night I had a dream about her. It was wonderful. She was very small and had dark hair like her daddy. She kept making sucking motions with her mouth like I have seen my infant niece do many times. I woke up so happy again. I haven't had another dream about her, but I hope that there are more to come.
    Telling the people at work was hard to do. My close friends already knew, but the rest were in the dark. I talked with my principal (I teach kindergarten) and I decided to sned out n e-amil to the staff. I wrote it up and sent it to the principal to send it out to everyone. He sent it out to everyone while I was at lunch one day. I walked back into the school and the office staff was crying. I just wanted to turn around and run. I thought that I was ready, but this was so hard. People told me that I was brave and I had made the right choice. A few people told me to keep faith and that tests can be wrong. This bothers me honestly. I am very realistic about what is going on. I know that Keiran probably won't ever come home from the hospital. I know that there are going to be major problems. Why would people try and give me false hope? I guess they might have heard stories about incorrect triple screens. The tests that I got done have more than a 99% accuracy rate. I just wish people would think before speaking. I guess trying to give me false hope is better than completely ingnoring me. I have had quite a few people that just stopped talking to me. Oh well, these people I can live without.
    Starting school was not as tough as I thought it was going to be. The kids have proven to be a wonderful distraction. None of them have noticed that I am pregnant yet. When one of them notices I'll fill the rest in.
    I was walking down the hall on Thursday and this second grade girl that I didn't know looked me straight in the eye and said in a very matter-of-fact way,"You're pregnant." I was so taken aback the only thing that I could think of popped out, "I know." Witty and clever, I know.
    I guess the main thing that I am still dealing with is my anger. I have no one to direct it at. I am so angry that this happened to us. I am so angry that my child will never grow up. There is a lot of anger stored up inside and I am afraid that I may explode with it one day. I guess right now feeling the anger is better than feeling the grief. I can cope much better with the anger.
    Sometimes I feel like others have already written her off. Someone commented today that there is finally a girl on our birth board. I wanted to yell, "Hey, what about me??????" I know that it was an accident, but it still upset me so much. Silly things upset me so much. This crap mixed with pregnancy is hell on the mood. I am going to sleep now. I guess my two hour nap wasn't enough.

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    I decided to look at urns today. A woman that I have been talking to suggested that I buy one early. I just never dreamed that I would be doing this.

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    I am disgusted! I found an urn that I liked and got to searching around the site. Just because I was curious, I looked at the pet urns. Many of the pet urns and the infant urns were the same. That made sense to me because pets and babies are both small. So I found the urn that I liked listed at $57 less in the pet section!!! I dug around some more and there were many like that!

    *******edited to remove links**************

    I am so disgusted. I wrote them a rather scathing e-mail asking them if they had a reasonable explanation or were they just into gouging poor, grieving parents.

    They wrote back.

    "Hello Jamie,

    Thanks for your interest in Perfect Urns. Some of the pet urns on our website are the same as the infant urns and some of the urns look very similar from the pictures but are in fact a different urn. Some prices vary a little because of the process in which they were created.

    To place an order please visit:

    Have a great day,

    Perfect Urns

    1-800-979-URNS"

    Have a great day? I am shopping for an URN! They should seriously consider changing their closing.

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    This is getting ridiculous. Like I don't have enough crap going on in my life.

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    Ok, so Trey just got off of the phone with the urn company. I could tell he was really upset when he got off the phone. They told him that they track who is linking to them in case they need to defend themselves. I am thinking that if they need a plan of attack to defend themselves, then something is wrong with their business practices. They are a company, not the military.

    Ok, I am done with that. I have wasted too much energy on them as is.

  9. #9
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    Today has been so hard. This week actually has. I have been completely on edge at work. I think that I have the most helpless group of kindergarteners EVER. It is the 12th day of school and we are still working on lining up. They all just wlk to the front. There are 21 now and the state max is 22. What jerk made up that ratio? Obviously someone that hadn't been in a kinder classroom since they were 6.

    Mostly I can kind of push the situation with Keiran to the back of my mind. I can still think of being pregnant and I can still think of how much I love her, but I can push the rest aside while I am at work. Not lately though. Lately it is always on the surface, just staring me in the face. I think it is because work has me completely frazzled. I have already had one child miss four days of school. I hope the rest of the year doesn't go like this.

    Trey got off work early today (11:30) and offered to come and see me. I asked him what for. I eat lunch at 10:50 and I have no more breaks after that. I am such a grouch and I hate being this way. I know that I have so much to be happy about and thankful for. I am just having such a hard time seeing it right now. I am just so tired of being me. I need a break.

    We get a three day weekend. Maybe I'll come back refreshed. I hope.

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    I feel a little more refreshed after the three day weekend.

    Trey admitted that it is hard for him to feel as close to Keiran as me without the physical connection. He even admitted to being a little jealous. I can't wait until she starts kicking hard enough so that he can feel it. I feel so bad for him. She is big enough now that we can feel where she is in the uterus. She definitely prefers the right side. I still don't feel her kick very much, but I know she is small.

    We decided to look at urns locally. We found a shop not too far away and are going to look there next Saturday. I hope it is more successful than our online venture!

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