I have been really bad about updating my blog. I am in my third trimester now. The home stretch. In 11 weeks Ella will be here, if not before then. This pregnancy has really been a lot easier than I thought. When we first got Ella's diagnosis I wasn't sure how hard it would be to carry her to term. But it really hasn't been as bad as I had feared. I was nervous about people who don't our situation asking me questions about my pregnancy and that it might be hard to find the answers. But really it hasn't been. When strangers ask questions like "when are you due" or "do you know what you are having", I answer them. " I am due in December with a baby girl." Most people I know know about our situation whether from facebook, or my blog, or just word of mouth. Everyone has been so supportive and great. They always give me a hug and tell me they are praying for Ella and our family. Although I have to admit a time or two I have seen people in the store that I know and I am not sure whether they know about Ella or not and I panic and run the other way! So if you have seen me in Wal-Mart and it looks as if I am running from you it's not because I don't like you, it's just that I can't talk about it right then.
I finally contacted the funeral home and talked to them about all of our options when she is gone. I just need to make an appointment to go in and finalize the arrangements and prepay so once she is born all we have to do is make a phone call and everything will be taken care of. We have decided to have her cremated. We don't own any burial plots anywhere and even though the funeral home said there are several cemeteries that offer plots free of charge for infants we have decided against burring her. We are young and who knows where we will be in the future. I hate the thought of moving one day and leaving her behind. So she will be cremated and whenever Jacob or I pass away her ashes will be put in our casket with us.
My next doctor's appointment is next Tuesday. After that I will start going every two weeks instead of four. I am starting to get to that point in my pregnancy where I am getting uncomfortable. My back aches, my ribs are sore and I am having trouble sleeping at night. I know that's all a normal part of pregnancy but I was hoping maybe I could skip all of that this time. But no luck. I am hoping to do a 3D/4D ultrasound soon so hopefully I will have new pictures of Miss Ella for you all! As my due date gets closer I am really excited to meet this girl and finally find out exactly who she is and see who she looks like! I have such mixed emotions. I can't wait for her to get here but at the same time I wish this pregnancy would never end.
The story of our daughter who was diagnosed with the fatal neural tube defect Anencephaly.
Thursday, September 30, 2010
Friday, September 10, 2010
What should have been
It has been an eventful week. Labor Day on Monday, my doctor's appointment on Tuesday, soccer practice on Wednesday and on Thursday my sister in-law had her "big" ultrasound to find out what they were having. It turns out they are having a little girl too! Her name will be Nora Alexis Lynn Roth. I am so happy for them! They both really wanted a little girl and they tried so long and hard for this baby. But I am also a little bit sad. Because our girls should be growing up together. Ella and Nora. But instead they will never even meet. Tiffany is due February 16th. Two months from the day that I am due, December 16th. When Tiffany found out she was pregnant we were so excited! We weren't sure if we would ever get the chance to be pregnant at the same time. This was to be Jacob and I's last baby and Daniel and Tiffany had been trying for almost 3 years and it didn't look like it was going to happen for them anytime soon. And then out of nowhere they were expecting a baby too!
We are still sharing in our pregnancy experiences together but it's not like it should be. This is not at all how us being pregnant together was supposed to go. I am so happy for them and I know they are going to be amazing parents. Sometimes it is hard. We had known that yesterday was the day they would be finding out the gender for quite some time. And I was so excited to hear what their baby was going to be. But it just hit me a lot harder than I thought when I got that text that said "It's a girl"! I guess it just seems a little bit cruel. We are both finally pregnant at the same time, we are both having baby girls, we are both due exactly 2 months from the day of each other. It's like a dream come true....except that its not. Our daughters will never play together. We will never lay them next to each other on the floor and take their pictures. Nora will never get any of Ella's hand me downs. That is what it hard, knowing what should have been. I just pray that holding baby Nora will be a comfort to me when my own arms are empty.
We are still sharing in our pregnancy experiences together but it's not like it should be. This is not at all how us being pregnant together was supposed to go. I am so happy for them and I know they are going to be amazing parents. Sometimes it is hard. We had known that yesterday was the day they would be finding out the gender for quite some time. And I was so excited to hear what their baby was going to be. But it just hit me a lot harder than I thought when I got that text that said "It's a girl"! I guess it just seems a little bit cruel. We are both finally pregnant at the same time, we are both having baby girls, we are both due exactly 2 months from the day of each other. It's like a dream come true....except that its not. Our daughters will never play together. We will never lay them next to each other on the floor and take their pictures. Nora will never get any of Ella's hand me downs. That is what it hard, knowing what should have been. I just pray that holding baby Nora will be a comfort to me when my own arms are empty.
Wednesday, September 8, 2010
25 Week Appointment
Yesterday I had my 25 week OB appointment. Everything looked good! Miss Ella's heartbeat was good although I forgot to ask exactly what it was. My doctor said I was measuring on target so that means that my fluid levels are probably still in the normal ranges. Which is very good news! I have to go do my one hour glucose test before my next appointment, which I am not looking forward to, but other than that it was a great appointment!
Speaking of fluid levels, my friend Brooke who I have been emailing with is currently 30 weeks pregnant with her son Briar who also has anencephaly. Her fluid levels are very high. She is 30 weeks but measuring 37 because of all of the fluid. I know she is very uncomfortable from the weight of all of the fluid. She has started to dialate and it looks like it won't be long before Briar makes his arrival. Please keep her and her husband Brandon in your prayers. It won't be long now until they have to say hello and goodbye to their little boy.
Speaking of fluid levels, my friend Brooke who I have been emailing with is currently 30 weeks pregnant with her son Briar who also has anencephaly. Her fluid levels are very high. She is 30 weeks but measuring 37 because of all of the fluid. I know she is very uncomfortable from the weight of all of the fluid. She has started to dialate and it looks like it won't be long before Briar makes his arrival. Please keep her and her husband Brandon in your prayers. It won't be long now until they have to say hello and goodbye to their little boy.
Thursday, September 2, 2010
Life
Sorry, it has been a while since I posted last. Life can get pretty hectic with 3 small children and it is hard to find time to come up with a complete thought let alone write it down! Brighton has started kindergarten and since we are homeschooling it takes up a big part of our day. He is a really good kid though and loves to learn so it doesn't really seem like work. Plus Brighton and Lily have both started soccer so that takes up another huge chunk of time that I usually have free. I guess I have been kind of avoiding my blog because I am not really sure how I feel about everything and what to write. I am kind of all over the place right now. It is easy with being so busy and having so much else to focus on to push everything that is going on with Ella to the back of my mind. There are still things I need to do, like talk to the funeral home and make arrangements for when she passes, but I am getting good at avoiding those things. It's easy to forget with her kicking and moving like crazy that anything is wrong. Until something will come out of nowhere and all of a sudden I am faced with it all again.
This past Saturday Jacob and I left the kids with his mom and dad and went to Six Flag's for the day, just me and him. We were in Hurricane Harbor, the water park part of the park, when two different families came in with little girls in wheel chairs. One of the little girls looked like she could have had spina bifida. From the waist up she looked completely normal and healthy but her legs looked smaller than the rest of her body like the muscles had atrophied and she couldn't use them. A year ago I would have probably looked at these two families and felt sorry for them. I would have thought "Oh, how awful to have a child with a disability." But as I sat on the park bench waiting for Jacob to get done changing out of his swimming suit all I could feel was envy.
What I wouldn't give for a little girl in a wheelchair. I know that wouldn't be easy but at least we would have her! We could watch her grow. We could hug and love on her. If only her neural tube defect would have been on the other end. It's amazing how quickly your whole perspective on life can change. A year ago the thing I would have been most afraid of is now the thing I would give anything in the world to have. Just a chance to see her grow and thrive. Even if she wasn't perfect. Even if she never walked or talked.
So that is pretty much how my days have been going. I am going through my day completely normally until I see something or hear something that brings it all back and I remember just exactly what we are going to lose. I have been listening to a song today that helps to remind me that we aren't losing her forever. One day we will get to see her again and love and hug on her. The song is called Glory baby by Watermark. Click on the link below to hear it.
Share Glory Baby by Watermark
This past Saturday Jacob and I left the kids with his mom and dad and went to Six Flag's for the day, just me and him. We were in Hurricane Harbor, the water park part of the park, when two different families came in with little girls in wheel chairs. One of the little girls looked like she could have had spina bifida. From the waist up she looked completely normal and healthy but her legs looked smaller than the rest of her body like the muscles had atrophied and she couldn't use them. A year ago I would have probably looked at these two families and felt sorry for them. I would have thought "Oh, how awful to have a child with a disability." But as I sat on the park bench waiting for Jacob to get done changing out of his swimming suit all I could feel was envy.
What I wouldn't give for a little girl in a wheelchair. I know that wouldn't be easy but at least we would have her! We could watch her grow. We could hug and love on her. If only her neural tube defect would have been on the other end. It's amazing how quickly your whole perspective on life can change. A year ago the thing I would have been most afraid of is now the thing I would give anything in the world to have. Just a chance to see her grow and thrive. Even if she wasn't perfect. Even if she never walked or talked.
So that is pretty much how my days have been going. I am going through my day completely normally until I see something or hear something that brings it all back and I remember just exactly what we are going to lose. I have been listening to a song today that helps to remind me that we aren't losing her forever. One day we will get to see her again and love and hug on her. The song is called Glory baby by Watermark. Click on the link below to hear it.
Share Glory Baby by Watermark
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