My weekend...

This weekend was wonderful.  Not because of anything extraordinary, but because I was able to spend it with family.  We were able to enjoy the great weather and just relax and celebrate my birthday.  Ron even got me tickets to see Cirque du Soleil this Thursday in Chicago, which I cannot wait for!  I have been wanting to see them live for years.  We are planning on hanging around downtown for the day and are having my family watch the kids.  It is a much needed date day and I just hope the weather cooperates.
I have been having a difficult time breathing and walking around and feel like I have definitely gotten bigger.  I am interested to see how I measure when I go back to the nurse midwife on the 7th.  I read somewhere that if a woman gets accessive fluid, it really starts to build up after the 30th week.  I am currently 31 1/2 weeks pregnant.  Annabelle is getting more active than ever and has definitely made me rethink my former opinion of her being my weakest child in-utero.  So even though I am not comfortable I am loving the feeling of having a little gymnist in me.  It's like she knows she needs to live it up while she can.  My lovely little Annabelle. 
Lately I have been thinking about how she would fit into our family and what sort of impact she will have once she arrives and I just can't picture any of it.  Will she have darker features like Danny or the shocking light features of Lilah?  Danny told me he cannot wait to see her and we have decided to take him to the ultrasound with us.  He's extremely excited to see, as he puts it, his Annabelle baby.  I will have my mom there in case he needs to leave or has had enough but I am interested to see what he thinks of her.  He knows she has a big ouchie on her head that cannot be fixed or healed and is too big for her to live with, but with his innocence I wonder if it will scare him or just make him curious when he sees her on the ultrasound missing so much.
Less than 9 weeks to go and it feels like time is flying by.  I want to pause time and box it up somehow so that I can go back to this in the future.  As difficult as this journey is, it is full of love and warmth and happiness, and I have been able to watch and appreciate my life and family more than I ever had.  I believe that Ron not finding a job this summer is a much needed blessing in disguise, and even though it's not easy financially- I believe it is more than worth it with all the family moments we have shared already.  It's the small things that I love and am glad this summer so far has been filled with wonderful small moments.

What I found during my research...

Today as I continued to look for some information regarding infant tissue and organ donation I stumbled upon a definition of Organ Donation Laws and was extremely upset about what it wrote... I believe that this definition was written approx. 5-10 years ago and opinions may have changed, but at that point there were numerous people who believe the following statement.

"Proponents contend that, because these infants are never conscious, they do not meet the most minimal criteria for becoming a person." West's Encyclopedia of American Law, edition 2

Enough people believed this that they passed a law that organs and tissue could be harvested while anencephalic babies still had a heartbeat and could be deemed "living". It horrifies me that first of all these poor helpless babies could be considered non-human as well as the fact that it would seem ok to harvest from them while they maintained basic human reflexes (breathing, heart beating, etc...) . I have not had the honor of meeting Annabelle yet and do not know how severe her anencephaly is, but from support groups I am on I know that mothers have seen their babies react to external stimuli, some could even eat on their own, and many wail as if in pain at times.

I cannot imagine for one moment that the little being moving, kicking, and squiggling inside me is not human. She has her own heartbeat, her own daily schedule of sleeping and wakefulness, and when we saw her on ultrasound she had the most beautiful features. I have read that in earlier medical books babies with this diagnosis were termed as "monsters", but I know that is the exact opposite of the truth. These babies are pure and innocent and will remain that their entire lives. Annabelle has given me a chance to love her in a way I thought was impossible, and I know others have already been touched by her brief life. I pray that these little ones will be treated with dignity and love, and hope mothers in my position are able to get as much support as I have.

Research Study

We are participating in an anecephaly research study being conducted by Duke University.  They are researching to see if they can find any biological or environmental factors that may contribute to babies getting anencephaly.  I am excited to be participating, because even though it won't help Annabelle it can potentially help babies in the future.  We have to give blood samples as well as cord blood at the time of Annabelle's birth and will be providing background medical information.  I only wish that this study was more known in the medical community.  They are looking for 10,000 cases and only have a few hundred.  I found out through a mom who had a baby with anen but would never have known otherwise.  It is actually a study for all Neural Tube Defects (NTD) including Spina Bifida... and there are thousands of cases out there.   

Today...

Today started off wonderfully.  It was beautiful weather and Ron and I decided to take our kids to Prairie Fest (a local town festival).  We all had a blast!   We were able to take the kids into the petting zoo, watch a children's musician, a magician, and we even bought a couple of fun treats- ice cream and cheese fries- who could ask for more, lol.  We came home and the kids got quiet time and nap time (and I decided to lie down too).  When I woke up I was in a completely different mood.  I felt upset, lost, angry, tired, and just extremely down.  I hate the fact that my entire mood can change in an instant and that once I get upset it's extremely difficult to snap out of it.  I love being able to enjoy my time with my family and this afternoon it took everything I had just to keep from snapping at one of the kids.  They weren't doing anything wrong, I was just done.  It makes me feel awful inside.  As I mentioned before, I have also been extremely aware that my due date is quickly approaching.  In the past I was able to push aside some of these feelings,  but they won't let me go anymore.   I just want to scream to people who look at me- this is my baby inside of me and she is going to die!  I want the whole world to know, so they can know her and mourn her like I do.  I want everyone to be sad with me, because Annabelle is important enough for the whole world to take a break and shed a tear.   But I know it's not how it works and I am being selfish, but I can't help it.  As any parent knows- when having kids, you want to share everything with the world.  Usually it's a beautiful phenomenon, but not in this situation.  I just hurt inside.

Routine Appointment

I had my routine appointment with the nurse midwife and everything is looking as good as it possibly can.  I am measuring a bit larger and can feel that I am stretching faster than I did with my previous pregnancies but am glad that Annabelle has become much more active and her heartbeat sounds beautiful!  Ron and I were able to find a study that Duke University is conducting, trying to find causes for anencephaly and I am glad that we will be able to participate.  It will in no way help our little one, but if it can help in any way to find some link for babies in the future, it will be more than worthwhile.  We are also trying to find information on tissue and organ donation and both the nursemidwife and I are having a difficult time finding anything.  I know through other mothers that states usually have a weight requirement as well as some other requirements and I am just hoping that if Annabelle is a potential donor, we will be able to find the information to help other babies in need.  Even in her short life she can help others and I am praying we find answers soon. 

On another note, I went shopping with Heather yesterday to look for preemie clothes in case Annabelle comes earlier than expected.  I am happy to say I was able to find a couple of outfits that will work, but even though I think they are adorable- I just don't feel like they are special enough for her.  I am pretty certain that nothing will feel "good enough" but I am still looking...

Wedding Weekend

This past weekend my cousin got married and we travelled to Columbus, IN for the occasion. It was a very bittersweet weekend for me. I am extremely happy for my cousin and enjoyed seeing most of my mom's side of the family together, but it was emotional for me as well. My uncle (the bride's father) was able to arrange for my family to get a professional picture taken, and I will forever be grateful for that. I am so glad I got a professional picture of my immediate family, but it hit me that this could be the only picture I have (taken professionally) with Annabelle alive and kicking. I had to find a corner and just let go for a few minutes, but was able to compose myself and enjoy watching my kids have a blast on the dance floor. I'm now 29 weeks along (30 weeks on Friday) and am extremely aware that even if Annabelle goes full term my time with her is running out. The due date is no longer some distant idea, it's becoming more concrete in my mind and it's breaking my heart. I am looking forward to meeting my angel, but am terrified of having to let her go.

 

My dress...

Last night I got to go shopping with Heather (no kids!) and it was just nice and destressing to get out.  I was looking for clothes for Danny to wear at the wedding coming up this weekend, but happened to see a dress for myself instead.  I was planning on just wearing an older one that I own, but this one begged me to try it on.  I left the store at first but came back after looking around at other things.  So I tried it on and bought it.  It may not sound like a big deal but it is pretty much my first clothing purchase this pregnancy and it made me very happy to have something new to show my Annabelle bump in!  She deserves a new dress and I am hoping to get some nice family pictures at the wedding. We don't get many family picture opportunities and I would like as many as possible to remember Annabelle's short life. 

Today is an absolutely gorgeous day outside, and I am glad we were all able to go out and enjoy it.  As I sat and watched the kids playing, I thought about how I would never see my Annabelle play like that. But for some reason I had a peace come over me and I knew she would be happier than possible on Earth up in Heaven.  And she will be able to keep an eye on her big brother and big sister from there. 
Annabelle is actually getting stronger every day.  I think she is setting out to prove me wrong, when I told everyone how weak she feels to me compared to her siblings.  I think she sits higher than my other 2 and her foot is constantly in my ribs. Even though it hurts, it's almost a nice constant reminder than she is quite alive and kicking! :-)