Sunday, December 30, 2012

An Update

I know I haven't said much lately. I should, but time's just gotten away from me. It's hard to believe it's almost 2013. This month has been busy and full of distraction, but when things slow down each day, I still cry for my daughter.

Tuesday, December 18, 2012

Daddy's Perspective



I was at work when Virginia text me that she was having labor pains. That moment I got excited, but Virginia told me not to get too excited yet. I mind was on her the entire day, and I started making plans in my head of how I was going to hurry home and get her to the hospital. At about 4 pm, Virginia text me that I needed to get home so we could get ready to head to the hospital. I told my boss I needed to go, and he let me off a few minutes early. I logged out of my computer, but learned later I’d forgotten to log out of the phone system. I accidentally left my phone on the “back to desk” setting. Oops.

Sunday, December 9, 2012

Missing Eden

We miss Eden so much... I can't believe that she would have already been 2 weeks old  tomorrow. Time goes by so fast, and already details from her birth and short time with us are getting fuzzy. I cry daily, more so at night than during the day. I guess I keep busy enough during the day to stay distracted, but things slow down in the evening and my mind is filled with thoughts and memories of our little girl.

Sunday, December 2, 2012

Eden's Memorial

Saturday we opened up our home to friends and family that were able to come and celebrate Eden's life with us. My dad made a really beautiful picture video that we played all day long on the television, and people filled our living room and kitchen. We told people anytime after 10, and most of everyone who came arrived just after 10 - at one point we had over 30 people in the house at once!

Thursday, November 29, 2012

Eden's Birth

This is going to be long, because I don't want to forget anymore details.

Monday morning James went to work like normal. He dropped Brooklyn off at my parents' house so I could get some rest (because she likes to wake up at 5:30 now). I remember waking up at about 8:00 and feeling some stomach cramps. I briefly thought that it felt like the cramps I had when I went into labor with Brooklyn, then I turned back over and fell back asleep. I woke up at about 9:00 and noticed a few more light cramps, and they'd come and go. All morning I had light cramps, and at about noon I started to time them. They were coming every 2-3 minutes and lasting about 30 seconds each. They were fairly mild, more of a tightening sensation than anything, and I was exciting wondering if I was in labor. By 2 or 3 in the afternoon, I was pretty sure I was in labor, but I wasn't sure if my contractions were doing much since they weren't lasting too long. I couldn't tell if Eden was head-down or not, but I thought maybe she was head-down because of the pressure in my pelvis with each contraction.

Wednesday, November 28, 2012

Happy Birthday, Eden Marie

Eden Marie was born Monday, November 26th at 11:20pm. She was 6lbs, 13oz and 18.75 inches long. She lived a beautiful 6 hours and 27 minutes with us before she went to be in her Mema's arms in Heaven....we are so incredibly blessed to have such a beautiful daughter, and we are so proud and honored to have been chosen to be Eden's parents. Things aren't easy for us right now, and my arms are aching to hold my sweet girl just one more time, but as I'm able to, I'll write and post our birth story, and some of the amazing things Eden did. Eden was and is perfect, and I wouldn't trade a single second we had with her for the world. She was SUCH a miracle, and you can take everything you ever read in a textbook about anencephaly and toss it aside, because they are wrong. I'll leave you with some pictures and the promise of more updates later. Thank you for your continued prayers.


Tiny, beautiful feet.


She was a chubby little girl! <3


Christmas Photo

Thursday, November 15, 2012

Still Pregnant, Still Stressed

This past week has been pretty much about how the rest of the year is going. I won't go into details, because it isn't my place to do so, but I nearly lost another family member, and one of my grandfathers had a stroke last week. Thank God they are both doing alright now, but this whole past week I've just been sitting here wondering what would be coming next. I just don't understand why our family can't just catch a break. It really doesn't seem fair.

Monday, November 5, 2012

More Time With Eden

So Friday I had another chiropractor appointment and my ultrasound appointment. The chiropractor went well. My doctor could tell she was transverse, but she moved a lot after my adjustment and during my acupuncture session, and by the time I went to the ultrasound that afternoon, she was head down. Obviously her being head down was great news, and it was such a relief to me. We also found out that she's chunky, because we could see the little rolls on her thighs and arms, but she's not huge, and she's not going to be huge because her head is so much smaller than a healthy newborn's. Her head measurements threw off the size estimation a bit, but it ranged from 5lbs 14oz using her head measurements to 6lbs 11oz excluding her head measurements, which isn't too bad for 36ish weeks.

Thursday, November 1, 2012

Transverse

I haven't written in more than a week, and I really should have. At my appointment a couple Mondays ago (the 22nd), Eden was oblique. That's a little better than transverse, but it still would result in a c-section if we can't get her to turn. I've been using the techniques on spinningbabies.com with seemingly no success. I had another OB appointment this past Tuesday, and we found that Eden was back in the transverse position, and had pretty much turned a 180. It is also obvious that Eden is quite large, but honestly I expected another large baby - I suppose it's just how my body grows babies. Nothing wrong with large babies.

Sunday, October 21, 2012

This feels so wrong to be writing...

I don't even know how to start this post... I'm at a loss for words, and each blog post I write comes with the pain of my reality, and I don't know how to deal with this reality. Saturday morning, at about 1 or 2 in the morning, we were awoken by my parents coming into our house. My mom said she had to tell me something, and from just looking at her face, I knew. My grandmother, Mema, had passed away. My sweet Mema...the one person who would call every single birthday and sing to us, the person who used to sing "You Are My Sunshine" to me, and take nature walks with us kids collecting little rocks, and nuts, and flowers, and could always find a four-leaf clover every time she looked at the ground.

Wednesday, October 17, 2012

Praise You In This Storm

Today I stumbled across a facebook page about a little boy named Noah. On October 5th, Noah was born with anencephaly, and he will be two weeks old in just a couple days. Little Noah is truly a miracle, and I pray that we can even hope for that long with Eden! Here is his facebook page if you'd like to give it a visit. Noah's story gives me such hope, and I'm going to be keeping this little boy and his family in my prayers.

Sunday, October 7, 2012

Maternity Photo Shoot and Nearly 33 Weeks

Yesterday I had maternity photos done by a really nice photographer, Lori, that works with Now I Lay Me Down To Sleep. NILMDTS is an organization that provides remembrance photography for families suffering the loss or impending loss of an infant. We went to Branson, MO for our maternity pictures, which is almost 100 miles away, but it was totally worth it. I am totally excited and can't wait to get to see our photos! I'll post a few when we get them back. If you want to see some of the other photos she's done, you can look at her website here. She specializes in baby and child photography, and her work is truly beautiful! If we ever get it in the budget, we'd love to go back to her and do family photos sometime!

Monday, October 1, 2012

My Angel Shower

Saturday my mom and her friend, Sherry, threw me an Angel Shower. An Angel Shower is similar to a baby shower, with a few obvious changes. The purpose is to celebrate the life of the child that isn't going to get to stay on Earth after birth. Instead of the guests bringing gifts like baby clothes and toys, they instead bring things for the parents to help remember the baby, or maybe a giftcard to somewhere, or something for the other child or children.

Saturday, September 29, 2012

The Tiny Rosebud

I have lots to share from today, but I'm completely exhausted and headed to bed, but promise to update soon. For now, I'll leave you with a beautiful poem that my friend, Sherry, modified for little Eden (original poem written by Helen Steiner Rice).

Saturday, September 22, 2012

Our Second 3D/4D Ultrasound

Today was our second 3D/4D ultrasound (read about our first one here), and it was wonderful. Eden has gotten a lot bigger, but she's no less stubborn than she was last time! She was head down, so the tech wasn't having the easiest time getting pictures of her face for us, and Eden kept arching her back and stretching her neck back (kinda like how Brooklyn arches her back when throwing a fit!) to get away from the wand! We did get some really good pictures though anyway, and the tech said that just from glancing, my fluid levels appear normal!

Wednesday, September 19, 2012

30 Weeks and a Blessing

I can't believe that I'm 30 weeks along now. I'm not sure where the time goes anymore - the days do seem to drag by, at least until my husband gets home, but each week seems to be over before I know it, and the weekends are over even faster.

Thursday, September 13, 2012

29 Weeks...and complaining.

I've been avoiding blogging these past couple weeks, because it seems all I can do is complain, and I feel so guilty when I complain, because I'm complaining about part of the only time I'm going to get with Eden...talk about feeling like a horrible mother. But maybe I'm allowed to complain a bit. It's possible to love Eden, and her every (mostly painful) kicks, and still hate being pregnant. I remember hating being pregnant with Brooklyn too - I think I even vaguely remember saying I'd never do this whole pregnancy thing again, which is how I feel right now, but I know I'll eventually forget how miserable I feel while pregnant, like I obviously did when we decided to have a second child...It just sucks. I guess I assumed being 40lbs lighter would make this physically easier on my body, but apparently 40lbs wasn't enough.

Friday, August 31, 2012

A Couple Pictures of Eden

James's parents took us out to dinner tonight in town. While we were there, the waitress, who is an acquaintance that I used to work with, was commenting on Brooklyn and stuff, and then asked if we were ever going to have another one. I really didn't know how to respond. I think I said, "Um...yeah...." and she just took it at that and went on with whatever she was saying...I think if she hadn't responded so quickly, I would have figured out how to explain that I was currently pregnant (I thought I was obviously pregnant...guess not?), and explained Eden's anencephaly to her, but she didn't give me the chance. Just another reason I need to stop procrastinating and just make some cards to give to people. I felt really weird and flustered the rest of dinner.

Tuesday, August 28, 2012

Third Trimester

Has another week really passed? It seems so, and I'm finding it crazy how quickly time is going by. The weekends are a total blur, but even the weekdays are soaring by...I'm 27 weeks now. Today is the last day of my second trimester.

Monday, August 20, 2012

We have a domain!

In case you haven't noticed, you can now find us at www.thelifeofedenmarie.com instead of the .blogspot address, though that one will still redirect you here if you so wish to use it. My mom purchased the domain so it would be easier for her and everyone else to remember it. Thanks, Mom!

Thursday, August 9, 2012

More Blessings

Today some blessings arrived in the mail. The first package was the breast pump that was donated to me that is going to enable me to pump and donate milk once I give birth. This was really important to me, because it doesn't look like donating Eden's organs is going to be an option. To be able to donate her milk to another mama who needs it will really make me happy - I've always wanted to donate breastmilk, but I never could get significant amounts while also breastfeeding a newborn on demand - I probably wasn't committed enough, or maybe Brooklyn was just a little piggy, but only after she went to bed and it had been several hours could I get more than a half ounce for all my efforts.

Tuesday, August 7, 2012

Happy V-day My Sweet Girl

Today I am 24 weeks, which means today is Eden's V-day. V-day stands for "viability day". This day is usually a huge sigh of relief to moms, because it means if their baby was born now, there is a chance of them surviving outside of the womb, though not without a lot of help. In actuality, the "viability" of each baby can vary to a degree (some have survived who were born at 23 weeks), but most hospitals have policies that require a baby to be 24 weeks before they'll use extreme measures to keep the baby alive. This day was a day I was so excited and relieved to hit with Brooklyn...I felt so SAFE once I hit 24 weeks, especially since girls seem to have better survival rates when born very prematurely.

Saturday, August 4, 2012

We are blessed...

Yesterday I was looking at infant urns. It's hard to look at urns as I feel my baby girl kicking inside me. I've started looking at urns and had to stop a few times now, but while looking, I'd always seem to end up at the same one. It's a little wooden box that says, "Sweet Baby Girl, You Are Loved" on it, and it has a place next to that for a picture. After looking at it a couple times, I also realized it played Amazing Grace. Amazing Grace was my Great Grammie's favourite song, and when I saw that, I felt like Grammie was telling me that Eden was going to be okay, that she would be there to scoop her up in her arms as soon as she gets to Heaven. God telling me this was the urn we were meant to have for her. I wish I could have bought it right then and there, but it was something we'd have to save for. I was thinking maybe we could get it by Christmas perhaps. 

Thursday, July 26, 2012

Peace Lily

I think I've said this before, but God has given me tremendous peace. I read a blog that described this journey of carrying a child with anencephaly as a series of peaks and valleys. It's surprising, especially to myself, but through this so far, God's given me more peaks than valleys. I'm able to laugh with my family, and smile, and sew, and complete my homework, and smile at Eden's kicks, and do all the other stuff that is part of my normal life, and I think I appreciate it all just a little more than I used to. Of course, there are times when I get sad because it'll just hit me outta nowhere that I'll never get to see Eden do the stuff that Brooklyn is doing, like learning to talk, or that I might never hear Eden cry or get to see her beautiful eyes, but then I remind myself that right now she's alive, and right now she's happy and safe inside me, and even once she's gone, only we are going to be sad. It isn't going to suck for her like it sucks for us - she gets to go be with Jesus, and she'll be sitting in my great-grandmother's arms watching out for us. It just sucks for us because we won't get to watch her grow up.

Wednesday, July 18, 2012

The MTHFR Gene Mutation

A couple days ago I received a call from the specialist's office, and they told me that my MTHFR test results were back. I have what is called a compound heterozygous mutation in my MTHFR gene. Though it looks like a text-speak derogatory remark, MTHFR stands for methylenetetrahydrofolate reductase. When I asked what my diagnosis meant for future pregnancies, they told me that if I changed nothing, I'd have a 1 in 25 chance of this happening again. They said if I take 5mg of folic acid, that I would have a 1 in 50 chance of this happening again, and if I take the 5 mg of folic acid, plus a prescription called Methanx, that I would have a 1 in 100 chance of this happening again. A "normal" person is said to have a 1 in 1000 chance of this happening. I cried after learning all this. However, the more I've researched the mutation that I have, the more in control I feel, and the more I question if the numbers the doctor's office gave are fully accurate. I'm actually very curious as to where their numbers came from, and I plan on asking the next time I speak with them. I also don't think their "solution" is the only solution or the best solution that is out there for this.

Sunday, July 15, 2012

It Isn't Fair

People keep telling me how strong I am. I may appear to be strong through my writing, or because I'm going about my days the best I can, or because I'm carrying Eden as long as I'm supposed to, but it's not me who is getting me through it, it's God. And honestly, I don't feel strong at all. Some days are definitely easier than others. A couple days ago when we had our ultrasound, I was happy. I was happy we were seeing our beautiful daughter, I was happy I could see personality in her, I was happy that God blessed us with this little girl, and that He had given us peace and allowed us to enjoy the ultrasound without sadness. Yesterday and today I've just felt like a mess.

Friday, July 13, 2012

Our First 3D/4D Ultrasound

Today we had our first 3D/4D ultrasound that some family members blessed us with for my birthday. It was utterly amazing. Words really can't describe the joy we both felt as we watched our daughter sucking on her hands and wiggling away from the ultrasound wand.

Monday, July 9, 2012

From Daddy's Eyes

The day that we found out that Eden Marie had a birth defect, was the worse day I have ever had. We are going to lose our child, our little girl. The moment the doctor told us that she has a 100% lethal defect, my world stopped. I remember looking at Virginia with tears streaming down my face as she sat there crying with her face in her hands. My mind started racing, how could this happen to us, how are we going to make it through this, what is our next step? My mind couldn’t slow down as we held each other and the questions going through my head went on and on. How is Virginia going to ever be able to go through a full term pregnancy? I felt like I needed to get it together. The only way to get through this first part was to maintain order and worry about my wife and family. I kept telling myself that my feelings didn’t matter right now. My priority is Virginia, and she needs me like she never has before right now.

Saturday, July 7, 2012

Mommy's Birthday

Today was my birthday. It really was a day of mixed emotions. I woke up fairly early after another restless night, and was greeted with breakfast from my amazing husband. He really is do everything "right" through all this... I really wanted to be mad at him at first for going about life and watching TV and playing and laughing with Brooklyn, etc., but it's exactly what he needs to do. He's supporting me, and he's always lending a shoulder for me to cry on, but Brooklyn needs him to be playing and laughing with her, because it's not that easy for me yet. I know it's different for him than it is for me because he isn't carrying Eden, and he may never feel the pain quite the same as I am, but I know he's still feeling the pain of losing a child.

Friday, July 6, 2012

Eden Marie

She's a girl!
On July 3rd, we had Eden's "20 week" ultrasound. Our only concern was whether she was a boy or a girl. The ultrasound seemed to be pretty standard. The tech chatted with us about Brooklyn, our first daughter, we found out Eden was a girl when she finally uncrossed her legs, and the tech left the room at the end to go get our pictures. During that time, James and I discussed the name. Prior to finding out Eden was a girl, we hadn't thought of any girl names.

He suggested Eden, and I immediately fell in love with the name - he always suggests the most beautiful names. We decided Eden Marie would be our baby girl's name, and we were so excited. The tech took a long time coming back to the room, but we weren't sure why - we never even dreamed it was because something was wrong. When she finally came back, she handed us three pictures; one of Eden's arms and hands, one of her foot, and one of her "girl parts". I was disappointed we didn't get one of her little face, but I assumed it was because she was so wiggly, and the tech couldn't get a good enough picture. The whole time I was there, it never occurred to me to ask if everything looked okay, because I guess I just assumed it did. I guess it was a blessing I didn't think to ask, so the memory and joy of finding out our baby is a girl wouldn't be tainted in that moment.