Monday, August 31, 2009

Results

We have finally gotten the results of the amino and our baby girl has Turners syndrome. This is great news considering the other predictions. She is nowhere out of the woods yet, she still has a severe heart defect to overcome. Our next ultrasound is in two weeks to see if her hydrops and cysts have gone down. Also a heart specialist will be there to tell us how serious her heart condition is and if it is fixable.

Thank you all for your support. We are just hoping to get to twenty weeks, her chances of surviving go up after that.

Sunday, August 30, 2009

Tomorrow

Tomorrow I get my amino results. I am so tired but cannot sleep. I think me and DH decided that if it is Tri 13/18 we will terminate. But saying it and actually doing it or two different things. I don't think I will be able to go thru with it, but then again I don't think I could go thru with carrying a baby full term to have it born stillborn or die the first week...98 percent of babies with Edwards syndrome don't make it to full term and 95 percent die the first week. It's so difficult. I'm trying to have an answer ready when they call but don't think I will be able too. I have a strong feeling she will have a disorder between the fluid in her spine and her femur bones are measuring 2 weeks behind. Maybe I've just been in denial this whole time and tomorrow when they tell me the truth I will be crushed. I've been strong and confident this whole week but I think the end is getting closer.

Saturday, August 29, 2009

Waiting

I suppose you could say the weekend is halfway over. Friday is done and Saturday is halfway over. I just have to get thru the rest of the day and tomorrow. I'm trying to stay as busy as possible. But I have to wonder, what am I suppose to be doing? When your told your probably going to miscarry any moment on any day, what are you suppose to be doing? These could be the final days and am I doing things right? Is there something I will regret not doing later?

I just try to think of her in a positive light. I don't think of her as sick, I think of her as my perfect little girl ! She was such a busy bee in my belly! She liked to lay on her stomach and bring her knees up to her chest. She had the cutest little butt!

I know I'm torturing myself but I think of her has how she will be when born and she will be so small and tender. She will have a frial little cry and will sleep so peacefully in my arms. I can image what she will smell like, and can image smoothing down her little baby hair.

I've stopped looking on the internet and going over "what if's?" or different outcomes. I'm at ease with just letting natural take it's course. What will happen is already set. The test is already in progress and the results were decided 4 1/2 months ago. I just didn't know.

Until then all I can do is talk to her and make sure she feels loved. I have a 3D picture of her now and it's framed. Everytime I walk by it I think, "hey baby Hope, I hope your doing okay in there"!

Thursday, August 27, 2009

It's so confusing

I'm sitting here thinking how on earth can I just go about my day knowing my baby is fighting? Like how am I suppose to just do normal everyday things knowing my poor baby is filled with fluid and her little heart is pounding overtime. I know I can't stop living my life and I need to contuine on for Kaycie. But really, the guilt is unbelieveable.

My blog

I am starting this blog for many reasons. One is that there are a lot of family members and friends who are deeply concerned and hoping for the best for our baby. I would like to keep everyone informed without having to re-live the nightmare everytime someone asks. Second, the best way for me to deal with it is to write. I have always done this. This is the best way for me to communicate my feelings. No. I don't want to talk about it. No. I don't want a hug. I'm sorry but that is just how I am. It's almost selfish because I know a lot of family members need hugs right now, but I can't. Maybe when I've come to terms. If that makes sense?

I would rather deal with it alone. But really writing about it helps me, it's my own therapy. I don't even care if anyone else reads it. It's poured out of me and so it is at peace.

I suppose if you can deal with my bad spelling, you could contuine on this journey with me.

Our pregnancy story

At 15 weeks 3 days I went in for a routine ultrasound and the tech discovered our baby had a cystic hygroma. I was set up an appointment with a fetal specialist a week later. I was uneasy about the time spent "not knowing" what was wrong with my child. The doctor had only briefly said "well it could be genetic, a heart defect or nothing". And that was it! I spent the whole week looking up all the possible outcomes and what exactly could be wrong with my baby. By the end of the week I was feeling positive and deciding to be as hopefull as possible. I would catch myself thinking or planning something for the baby and then stopping myself. Telling myself, "you should wait".

Well today was the big day, the day of truth. I had a detailed ultrasound. I spent the whole ride up there (it was an hour away) praying the baby had a heartbeat. That was my first obstacle. Let there be a heartbeat and then I'll worry about the cysts. As soon as the ultrasound tech started, I could see the cysts. They are about the same size as the babies head. I was dissappointed but hopeful. I have read that they can go down on their own up till 30 weeks. The ultrasound tech looked at all the organs and head. Taking her time and taking tons of pictures. Finally after about an hour she said she was going to get the doctor to explain everything.

Well the doctor, the tech and the genetic counselor all walked into the room. The doctor stated, "today is not a happy day for you, let me show you everything that is wrong'. He first went to the babies heart and told me that she had a severe heart defect. The tech was unable to find the fourth chamber! I thought she spent a lot of time on the heart but it looked fine to me. The heartbeat sounded normal and was at 160. Then he went over the cysts and then the fluid in the babies spine. He clearly stated he thought the baby had a chromosome issue and a heart defect and asked me if I wanted to terminate right now. That was a complete shock, actually I didn't even remeber that part until later on.

Well I was not going to take all of this laying down (even though I was on the table). I asked him if the baby had "hydrops" or was the fluid only in the cysts. He confirmed yes the baby had fluid all in her organs and under her skin. I then asked for an amino and that I wanted the FISH results that could be given in 48 hours. The doctor seemed shocked. He said yes, they could do that. I informed them all that I was not going to just terminate my baby. I would wait for the amino results and see if the baby had a chromosome issue. Only then if it came back positive for a life threatening syndrome would I consider termination. I also stated if the tests came back normal then I would wait until the baby could see a cardio specialist and tell me exactly what was wrong with her heart. I had done my research and had already knew the doctor would suggest termination.

I don't understand it, why would they not give the baby a chance? Is our society so obessed with perfection that they'd just terminate an unperfect baby?

You'll really asking me if you want me to let you take the baby out of me still alive and let it die? After I just watched my baby on the screen dancing and playing in my belly? Are you serious right now?

I'm not a super religious person, but I believe although all odds are against my baby she is fighting in there. Her little heart is pumping away with a passion. I will not give up on her. When she is ready and tired and wants to go to heaven, I will let her. And I will be there for her in her journey.