Emma's Headstone - It's In

I don't know why, but we kept putting off getting Emma's headstone. But we finally picked it out and ordered it about a month ago and last week I got an email saying that it was in. We went as a family after dinner yesterday and saw it. It's small and simple, but so was Emma. I really like it.

Another Scrapbooking Invite

Hey everyone! I've put together another time to gather together to work on more of the scrapbook albums. We will be gathering Thursday, July 16, from 6 to 9 p.m. Once again it will be held at the church buildling located at 1555 North 1350 West in Provo. Come empty handed or come loaded with paper cutters, scissors, glue, friends, and whatever else you want! The full announcement is below:

WHEN: Thursday, July 16th from 6 to 9 p.m. Come whenever you can during that time period and just get as much done as you can!
WHERE: Church building located at 1555 North 1350 West, Provo, Utah
WHO: Anyone who can! You don’t need to be super creative (although you can be) to be of help. Feel free to invite family and friends to join you!
WHAT TO BRING:The most crucial supplies to bring will be paper cutters and adhesives. We will have some there, but if we have a good turn-out, you will have to take turns using these items. Also, if you have any old scrapbook supplies you wish to donate or that you wish to use, feel free to bring these and share them with others.

We're continuing to chug along with these scrapbooks, but there's still lots to do! A big thank you to all who have helped thus far! You guys are the best!

Hope to see you there!

Emma's Pond

Each year the Utah Foster Care Foundation hosts a Chalk Art Festival up in Salt Lake. I had never heard of it before until my friend Camille told me about it. Some of you may remember her, she hosted one of our giveaways with a name drawing. You can check out her work here or here. As you can see, she is an amazing artist!

She has participated in the Chalk Art Festival for a few years now and this year she contacted me and asked if it would be okay if she did a little tribute to Emma. She called it "Emma's Pond." I was touched that she would think of doing this for us. Unfortunately, the festival was Friday and Saturday and I was camping all last week and didn't get home until midnight on Friday and then it was raining all day Saturday so I never went up to Salt Lake to see it. But Camille posted pictures on her blogs. So check out Emma's pond here and here.

A big thank you to Camille and all those who were working with her!

A picture of the artists:

The finished work:

We're Scrapbooking Again!!!!

WHEN: Thursday, June 11th from 6 to 9 p.m. Come whenever you can during that time period and just get as much done as you can!

WHERE: Church building located at 1555 North 1350 West, Provo, Utah

WHO: Anyone who can! You don’t need to be super creative (although you can be) to be of help. Feel free to invite family and friends to join you!

WHAT TO BRING: The most crucial supplies to bring will be scissors and adhesives. We will have some there, but if we have a good turn-out, you will have to take turns using these items. Also, if you have any old scrapbook supplies you wish to donate or that you wish to use, feel free to bring these and share them with others.

We're continuing to chug along with these scrapbooks, but there's still lots to do! A big thank you to all who came last time and who have worked on some on their own time! You guys are the best!

Hope to see you there!

P.S. For those who were able to come last time - do you have any suggestions for a better way to organize all of the paper and embellishments? I feel like everything was just scattered about and a lot of stuff got neglected because it was buried. The only thing I can think of is to start with more tables to begin with, but then I'm afraid it'll feel weird to have tables full of stuff surrounding you. Does that make sense? Anyways, any suggestions?

P.P.S. Feel free to bring kiddos along. I brought my boys last time and a couple of other people did as well and they all played together with my husband (love ya Husband!).

P.P.P.S. Will snacks entice you to come?

What To Do

I've been thinking a lot lately about what I should do with this blog. As I've said before and as some of you know, I have a private family blog that I've had for many years. I started this blog mainly because I thought it would be too difficult to blog about Emma and about the fun times we were having with our boys right next to each other. However, as time went on, we found great joy in Emma and I didn't feel like it was a weird thing to blog those things together. But at that point, I had already started this blog. Not only that, but this blog had reached across the country and even to various parts of the world and I was very grateful that Emma's story was being shared and appreciated by so many.

Now it's been almost 5 months since Emma has left us. Wow. Sometimes I wish time would stop and the world would remember our sweet little girl. While we shall never forget Emma, the world moves on without her. We now face the awkward question of "how many children do you have?" While I don't like to make others uneasy, I do like to mention Emma because I don't want her to be left behind.

Having said all that, I'm not quite sure what to do with this blog now. I would love to continue to share Emma's story with the world, but Emma's story is the story of our family moving and continuing on in this world and I blog about that in my other blog. I can continue to blog about ups and downs and I can continue to blog about the scrapbooks (because I still need help!) but I'm not sure of what else to blog.

I think for sure I'm going to take some time to get Emma's blog more user friendly. I realized that I've never put the links to all of the other anen mom's blogs up here and I would like to do that. If you're reading this and you are a blogger of a baby with anencephaly, please leave a comment with your blog address. I have them all in my google reader, but it would be so much quicker if the comments were just left. And if not, then I will just go through my google reader and do it. I think I'm also going to put up links to specific posts on the sidebar so that people who come to this page for the first time can get a better idea of some of the thoughts along the way. I'm also going to be publishing this blog into a book (probably through blurb) so that we can have that as part of our memories of Emma.

Congratulations

Congratulations to Emma!

You are going to be a big sister!

Thank You Thank You Thank You!

A HUGE thank you to everyone who came and made scrapbooks with us today! I had no idea if one person or 40 people would show up, so I was very happy that 20 people were able to come! The only problem, however, was that I underestimated how long one scrapbook would take. I figured that if someone came for most of the time, they could get about 4 scrapbooks done. Oh how I wrong I was. There was only one person who got 2 scrapbooks done, and she did them simultaneously. Everyone else was able to get 1 done. But don't get me wrong, I'm so grateful for those! It just means that we have tons more to do! Several of you e-mailed me and told me that you couldn't make it but you'd love to do some on your own time, and that would be wonderful. Also, we will for sure be planning another get-together to get more done. But the ones that are done look amazing!!!! I love them all! So a huge thank you to everyone! And I guess I was so wrapped up in my own scrapbook album that I completely forgot to take pictures of us all scrapbooking away! Oh well, I'll just have to make sure I do take pictures next time we do it!

Also, I just wanted to say that I haven't forgotten about featuring blogs on Friday, I was just out of town one week, and then did forget the next week, so then I didn't really get back into the swing of things. I will, however, be doing more soon. So stay tuned....

You've been waiting for it...

Scrapbook Album Extravaganza

WHEN
Monday, May 25 (Memorial Day) between 8:30 and 11 a.m. Come whenever you can during that time period and put together one or multiple albums.

WHERE
1555 North 1350 West, Provo, Utah

WHO
Anyone who can! You don’t need to be super creative (although you can be) to be of help. Feel free to invite family and friends to join you!

WHAT TO BRING
The most crucial supplies to bring will be scissors and adhesives. We will have some there, but if we have a good turn-out, you will have to take turns using these items. Also, if you have any old scrapbook supplies you wish to donate or that you wish to use, feel free to bring these and share them with others.

We’re hoping to be able to get most if not all of these scrapbook albums done in this session, but we know we can’t do it alone. We hope you’ll all make an effort to come and join us. If you have any questions, don’t hesitate to ask.

Hope to see you there!

Scrapbook Extravaganza

First of all, I just wanted to say congratulations to my sister and brother-in-law and a big welcome to the world to my newest niece!

Now, as for scrapbooking - we're not doing it this Saturday. So, for those of you planning on participating, would you rather do it this Monday in the morning (Memorial Day) or next Saturday (May 30) with the possibility that it may have to be delayed again if we do it next Saturday. Thoughts?

A Few Thoughts

1. Thank you to everyone who has given me positive feedback about my KSL High 5. It wasn't as embarrassing as I'd thought it would be (considering I hadn't showered) and it's kind of fun having people both that I know and don't know tell me that they saw me on TV.

2. On Saturday there was a Remembrance Walk for those in the area who have lost their babies or small children. It was definitely a tear-jerker. It makes me want to move to an area that doesn't have any of these amazing resources of support that we have so that I can start them there and bless others' lives with them. If you're in an area that doesn't have these kinds of things, feel free to e-mail me and I can let you know all of the many resources we've been blessed with so you can possibly get some stuff started in your own area.

3. In my church, The Church of Jesus Christ of Latter-day Saints, there is no paid preacher or pastor. The ones who speak or give talks are members of the congregation. I was asked to give a talk this past Sunday (Mother's Day). Because of time constraints, I only gave the first half of my talk, which was basically my story of motherhood. I feel pretty good about how it went, but sometimes I wonder if I come across as always talking about myself because of the fact that I bring up Emma's story so often. Tim doesn't think so, but he's an amazing husband who loves just about everything I do.

4. Scrapbook albums. For those of you who are new, let me go back a bit. After Emma died, the hospital gave us several things for mementos. One of which was a pre-made scrapbook album. I also had a cousin-in-law give us one. I loved both of these books and it was so nice to just print pictures and stick them in and then have them ready for display at Emma's funeral. However, the lady who runs the whole bereavement support thing said that they don't have very many left and the original ones were all donated. So I have had a few different scrapbook stores and people donate scrapbook supplies and/or money and we now have everything we need to put these together! So we're thinking that on Saturday, May 23rd sometime in the morning, anyone and everyone is invited to come join us to put these together. Whether we know you or not, you're invited! I'll be posting more exact details sometime next week (like place and time), but tentatively put it on your calendars. The more the merrier!

5. Pregnancy and birth in general can really mess with your hormones, but since losing Emma, I didn't realize the tremendous swing there really would be. My self-esteem has had some of it's highest highs and some it's lowest lows over the last little while. Lately I've been on the lower end and I've been trying to figure out what will help me the most to kind of get out of my low self-esteem funk. One thing I've decided is that I'm going to be checking and posting on blogs less. So I apologize, but Emma's Story will not be updated as often as it used to be (which used to be every couple of days). I also apologize for the lack of comments I will be leaving on others' blogs, but at this time I want to spend more quality time with my boys and husband, as that is what truly makes me happy.

6. Just a friendly reminder that the Running With Angels 5k is this Saturday. We are already signed up and ready to go! Come run with us (or you can run and then leave us behind when we have to start walking)! Click here for my original post about it.

Here's the Link

Thanks to Staci for e-mailing me this link. I tried to find it myself, but I couldn't. Here's the link to the story and the news clip for my High 5:

http://www.ksl.com/index.php?nid=148&sid=6415217

I also wanted to give credit to Julie Whiteley for many of the photos. She's given us permission to use them however we'd like, so my sister sent some to KSL 5 and they attributed them all to her.

E-mails

I really don't think I can thank you guys enough for the love, the support, the prayers, and everything else that you've shown us over the last while. I know I say it a lot (that I can't thank you guys enough) but that's because it's true. You are all so wonderful.

I also wanted to thank those of you who have e-mailed me and shared with me your stories. The e-mails aren't flooding in, but I have gotten quite a few e-mails from people across the globe who have similar and not so similar stories. I am so grateful for the stories and words that you have shared with me. They have touched my heart and I'm happy to know that Emma's story has touched your hearts as well.

So once again, I say thank you.

And for those who have asked, my High 5 is being aired on KSL5 tomorrow morning at around 6:25 (possibly a few minutes earlier).

My High 5!

This what the producer had to say about when it will air:

"May 8th, the Friday before Mother's Day. We figured that would be a nice gift for her, and a tribute to mothers everywhere. So, let people know May 8th at around 6:25. I'd tune in sooner just to make sure you don't miss it."

So there you have it. Anyone want to invite me over around 6:15 in the morning this Friday so I can watch it (we don't have any tv stations) or anyone want to tape it for me?

P.S. Hawaii was wonderful.

Scrapbook Albums!!!

Okay, I know I keep saying things are still coming together with them, and that continues to be the case. But they are getting much much closer! I have to thank both Sandy and Michelle for all of the stuff they've done! I would be no where still if it wasn't for them.

So I am going to Hawaii next week!!!!!! (I know that's besides the point, I'm just a little excited so I had to throw it in there). When we get back, I'm going to have a scrapbook party where you all can come and we can officially make these albums!!! (Okay, I'll try to contain the !!!!s).

I set up a poll on the side of various dates and times when we might have the scrap booking extravaganza. It will be here in Provo, probably at our church (I will give the address later when we know for sure that's where we'll do it). Anyone and everyone is welcome and invited to come. It will probably also be a time frame, where you can feel free to come to whatever parts of it you can (i.e. doing it from 5-9 and maybe you come from 5-7). We'll finalize the details later, but I want to get a general idea of when people would want to and can do it.

For the poll, you can vote for a preference of date and time, or you can vote for a preference against a certain date or time. I also think that if you want to vote more than once, you can clear your computer's cookies and that way if there are a few days you want to vote for, you can do that as well. Feel free to leave any comments or suggestions about dates, times, whatever.

Thanks!

Why?

Apparently a lot of anencephaly moms have been getting attacked via the internet lately. The comments and emails being sent to them aren't just hurtful and rude, many of them are obscene. I know that Myah (mommy to Faith), Nicole (mommy to Logan), and Misty (mommy to Isaac) have all had unsettling comments or emails sent to them. As if going through this wasn't hard enough, people have to make it harder by just being nasty. It makes me sick to think about.

So I'm asking a favor. Please pray for these people who are attacking these courageous mothers. Pray that they might let God enter into their lives. And if they can't do that, then maybe we should pray that they can just be nice. And if they can't do that, then maybe we should just pray that they won't be mean.

3 Months

Today marks 3 months since Emma's birth and passing. Time really does go by quickly. I still haven't visited Emma's grave site. We couldn't put a headstone in until April, because the ground is oftentimes frozen before then, but we still haven't done it. I think that's the reason why I haven't visited though. I think I need something tangible to look at and to touch. Not just some grass and thinking that she's somewhere around.

However, since it is her 3 month birthday, I want to come up with some traditions that our family can incorporate to remember Emma by. Here are a few suggestions I've gotten from other people:

• go to the grave and sing Christmas carols around Christmas
• hike the "Y" (it's a big Y on a mountain here) on the birthday (I don't think this one would work for Emma though because of the time of year)
• every year on the birthday, do some charitable act related to how old that child would be (i.e. at one year - donate 12 mo. girl clothing to a shelter, at 6 year - donate books to a local elementary school, etc.)

We're still trying to figure out what works and what would be meaningful to us. But we're also not very creative people, so if you have any ideas, please share them with us!

Running With Angels

I received this email earlier today.

Dear Friends,

Pam Hansen, who is the author of the book, Running with Angels is co-sponsoring a 5K Run/Walk on May 16, 2009 along with the help of Intermountain – Utah Valley Regional Medical Center. It is at 8:00 AM at Thanksgiving Point, in Lehi. This year, she has designated that all of the proceeds of the race are to go to Angel Watch to support our program in the Utah South area, with any special donations going to our statewide program! We are so grateful for her kind generosity!

As the statewide Angel Watch program is at risk for any further funding next year as we are almost entirely funded by donations, we would like to encourage you and your families and friends to register for this walk/run and participate on May 16th as you can, so that future potential Angel Watch families can receive support as they have in the past.

The link to the race/walk information and the registration form is attached! Thanks for your support and ….See you at the race!

Love you!

Carolyn Kasteler, RN
Director of Angel Watch

PS – For those of you who are not able to attend the race but would like to make a donation to Angel Watch, please go to www.mckay-deefoundation.org to make an on-line donation! Thanks in advance for any support you can give us!! We hope to be here to support any families in the future who may have these needs.

I fully intend to participate and run in this race. For those of you who may not remember, Angel Watch was the program that got in touch with us after we received Emma's diagnosis and they came and visited us twice in our home before her delivery and once afterwards. They helped us talk things out and really discover how we were feeling. They also helped us out with our birth plan and funeral arrangements. They were there for us with as much or as little as we needed.

I invite all in the area to come and join our family in this event. Online information can be found here: http://runningwithangels.com/. I also have a registration form that I can email you and you can send in if you don't want to do it online. Prices go up after May 2nd, so register today!

Let's see...am I forgetting anything else? If I am, just let me know. And I hope lots of you will be able to participate with us!

Happy Easter

I spent the day yesterday with my family, so that's why I'm only now getting around to an Easter post.

This was a very special and meaningful Easter for me. I had the opportunity to teach part of an Easter lesson yesterday to the girls ages 12-18 at my church. Preparing for and giving that lesson was an uplifting experience that made my testimony of our Savior even greater.

I know that He died for me and for you. But more than that, I know that He rose again on the third day and I know that He lives!

And I know that we too will rise again after our deaths. That means so much more to me now than it ever did before. I know that we will be reunited with Emma after this earthly life and that we will be with her forever.

This Easter season has filled me with hope. Not a "I hope these things will happen." Because I know of their surety. But a hope that has allowed me to lift my eyes towards Heaven and rejoice in His glorious plan.

I love my Lord and Savior Jesus Christ. I am so grateful for Him as He walks this path of life with me and my family. I am grateful for the gift of eternal families and that my family can be together forever someday. Until then, I will continue to hold Emma close in my heart.

Happy Easter!

Thinking of Misty

Tonight my thoughts are with my friend Misty and her family. I met Misty through one of my anencephaly yahoo groups when she started a message with, "Hello from Utah!" I contacted her and it turns out that we live in the same city (in fact, she lives across the street from one of my husband's cousins). We got together after Emma was born and there was an instant bond. She is currently pregnant with Isaac, who has also been diagnosed with anencephaly.

A week ago, Misty found out that she has polyhydraminos (excess of amniotic fluid (it is not uncommon in anencephalic pregnanices)). Unfortunately, her poly was so bad, that it was a serious risk to her. So her c-section was moved up from May to tomorrow, April 8th. I can't get her out of my mind and I pray that the Lord will give her the strength she needs tomorrow and that she will be blessed with time, so that she, her husband, and her three other children can enjoy time with Isaac.

If you think about it, please stop and say a prayer for Misty, Isaac, and the rest of their family.

Hopefully Misty will update her blog. If you want to read it, you can find it here: A Road Less Traveled.

My "High 5"

I've recently joined a gym as part of a decision to get back into better shape. I go almost every day at around 3 in the afternoon. Sometime last week, my sister e-mailed me and said she was coming to Provo to do some things and wondered if she could stop by my house to visit (she lives about 45 minutes away). She said she wouldn't be able to stop by until 2:30, so she asked if I could go to the gym later in the day. I replied in an email and said that would work, I then asked what she had to do in Provo.

I never got a response back from her and didn't think much about it until this morning when I was planning my day out. I started to get really worry that something was wrong and she needed to come talk with me face to face about something. I got a little more anxious still when Tim came home for the afternoon. I was worried that Kristen (my sister) would be uncomfortable talking about whatever it was in front of Tim.

Oh little did I know!

So I was on the phone with my parents, first my mom, and then my dad, just talking away and looking out our window. I was wearing sweatpants and a t-shirt because I was going to the gym in an hour or so.

So I'm looking out the window and then I think I see my sister drive by. But our neighbor's have a car similar to hers, so I figure it must be them. Then I see this car pull up slowly on the street, but I don't think much of it because it goes out of my view. A minute or so later, another car that I don't recognize pulls up and stops outside my house on the street). I can't see the people getting out very well, but I know that I don't know them. Next I see the car that I thought was my sister's drive by again. And then? I see my sister-in-law drive by and I am almost positive it's her. It continues to get better, because Lecia (my sister-in-law) drove by two more times! I'm a little perplexed now but still don't think much of it. Then a white car pulls up and stops on the street in front of our neighbor's house. I didn't recognize the car, until my aunt gets out of it! I'm so confused, so I change windows to get a better view and see my sister, my aunt, and two other people I don't know all talking on the sidewalk. I told my dad that I needed to go and hung up the phone. I continue to watch the people, while Tim is totally just sitting on the couch, not wondering what's going on at all. And then I see the lady I don't know pull out a microphone with a news label on it. I tell Tim and he casually says, "maybe you should change your shirt."

ACK! I quickly run into my room and change both my shirt and pants, but there's no time to fix the hair or put on makeup because the door is being knocked on! Tim tells me I'd better answer it. So I open the door and there is the woman with the microphone, a man with a video camera, my sister, my sister-in-law, and my aunt!

I forget the woman's name, but she was from KSL5 and was giving me a "High 5." She said that they seek to recognize people who have changed others lives for the better and that my sister had nominated me for a high five! So we gave high fives and then she interviewed me a little, while I'm standing there dumbfounded on my doorstep. She also interviewed my sister, Kristen. All the while, Peter is jumping and throwing his blanket in the background.

Then they wanted to get some shots of me playing with the boys, so we tried that, but it's hard to stage playing, especially when you know people are watching. Then my best friend Janet came! She had walked from her house to mine with three kids 3 and under!!!! She is amazing! They interviewed her as well and Janet says such good stuff in front of the camera! I hope they show mostly her and Kristen, and not so much me.

Anyways, we got a gift bag that's got some passes in it for some places and a few other items. All in all, it was a really cool thing and I'm honored that my sister thought to nominate me! And now it makes sense why Tim spent his afternoon home cleaning our house (they told my sister that they might film inside or outside my house). They said that they air their high 5s on Friday mornings around 6:30, but the woman didn't know if it would be this Friday or the next one. So once I find out, I'll let you know. I guess you can also see it on ksl.com after it'll be on t.v.

(Sorry if that ended abruptly. While in the middle of the last paragraph, Benjamin started screaming and I went to check and blood was oozing out of his mouth (and wouldn't stop). We've now got everything under control, but I lost my train of thought and just ended the story soon thereafter.)

Thanks for the High 5 KSL and everyone who was in on it!

Emma's Imprints

Some time after Emma was born, Heather (the bereavement specialist) did imprints of her hands and feet in clay. We just got them back this morning and I love them! There is a Christmas ornament type one with her feet and her first name, and then there is a bigger one with both her hands and feet with her first and middle name. They are so beautiful and I'm so grateful to Heather for doing these for us!

When Heather dropped these off, I talked to her about making the scrapbook albums and she's going to see what funds they might have to help us towards purchasing albums or what kind of deductions we can get from being a tax-exempt organization. So I will let you know more as we figure out more.

Scrapbook Albums

Sometime after we found out about Emma's diagnosis, Tim's cousin Jamie sent us a pre-made scrapbook album. It was adorable and I loved it (still do)! In the hospital, we were sent home with another pre-made scrapbook album (by pre-made, I mean all the pages are cute and decorated already and they are just waiting for you to put your pictures in). We filled both of them with pictures right away and were able to display them at Emma's memorial service. Pictured below are both of the albums, the one on the left being from the hospital and the one on the right being from Jamie.

About a month after Emma left us, we met with the sweet ladies from Angel Watch again. Two of them had already seen Emma (one was our nurse when Emma was delivered and the other one came in afterwards and helped us bathe and dress Emma, took pictures, and did molds of her hands and feet). However, the third lady had not seen Emma and asked if we had any pictures. I brought out these two albums for all three of them to look at. They loved looking at the pictures and both the nurse and Carolyn, the lady who had not met Emma, were astonished at how beautiful they were. I told them that Tim's cousin had made one and that Heather had given us the other one (Heather being the one who helped us bathe and dress Emma, etc.). Heather then explained that a mother had donated about 100 of those albums and she was able to give them out to families that lost their babies or young children, but that she was almost out of them.

I decided to contact several scrapbook stores to see if they would donate any supplies so that I might be able to make some more books like these to pass on to other mothers. I didn't think I would get much of a response, but I figured it wouldn't hurt to at least try. Well, a sweet lady from amillionlittlethings.com responded to me and told me that she would love to help. She said that she would put a box of things together and send it my way. I received that box yesterday and was completely amazed! There was probably hundreds of dollars worth of stuff in there! Take a look for yourself at the stuff she sent (and I don't think the picture does is justice because you can't see all of the stuff underneath other stuff). There's tons of paper and embellishments.

So now Tim and I are trying to figure out how to best go about this all. The thing we most need now is albums to hold everything in. We've discussed various ways that we could home-make some albums, and we've looked a little online at albums we could purchase. I'm wondering if any of you have any great ideas of what we should do for albums. We like the 8x8 size, but most of the paper is 12x12 so we could do that size as well. Also, we're totally fine with not having everything uniform. If some are 8x8 and some are 12x12 and some are 6x6 and some are 8 1/2x11, we're totally fine with that. But I'm looking for your guys' input on any ideas on the best way to make/purchase albums.

Next thing we're trying to figure out is the process of assembling everything. We talked of offering it to one of the young men at our church who might use it for an eagle project or working with a young woman on it for a value project or discussing it with the Humanitarian Committee, doing it for a mutual (youth group) activity, or just putting something together ourselves and just inviting whoever wants to come and help to do so. Any thoughts? Would any of you be interested in getting together at some time and helping us? Also, if it's something that we put together ourselves and you're interested in joining us, would some time during the day be best or in the evening or on a Saturday? We were thinking that we might just set up some tables in our church's gym so that we can spread everything out and work on it.

As you can see, we're a pretty indecisive couple. So I'm writing this because I'm way excited for this all to take place and because we're trying to figure out the best way to go about it all.

Also, if you're someone who loves to scrapbook, but have switched to mostly digital stuff, we'd love to take any donations of your old stuff that you'd be willing to give. Or if you're interested in contributing in a monetary way to help us purchase albums, that would be more than welcome as well. Or if you know someone who could get us a discount or really anything you can think of. So if you have any thoughts or comments or are interested in participating or helping out in any way, please leave a comment or email me at emmasstory@gmail.com (or my personal email address if you have it).

Thank you!

A week of births

I know of three anencephaly mommies who will be delivering their babies within the next week. Today, Brandy will be induced in Kansas and will deliver baby Francis. On Friday, Holly from Ohio will be induced and will deliver baby Carleigh and next Monday, Jill from Texas will be having a c-section to deliver baby Ellen. They are all in my thoughts and prayers at this time as they prepare to meet their little ones. It is such an exciting, yet frightening time. Feel free to join me in thinking of and praying for these mommies and their families.

Thinking About My Angel

I've been thinking a lot lately about Emma dying before birth. I said before that I was struggling with this, and I still am a little, but through the grace of our Father in Heaven, he is helping me to heal, draw nearer unto Him, and to understand His hands in all things.

I received new insight tonight, sadly it is because of my dear friend's loss. My heart is breaking for her and her family. But it made me realize something. I realized that I have been focusing too much on what we didn't have with Emma - a live birth.

But oh what things we did have with her!!!

I got to carry this sweet child for 8+ months. I got to make memories to last with her while she was inside of me. I got to hold her precious body, bathe her, stroke her fingers and toes, and snuggle with her. I have beautiful pictures with her that I can always look at. I got to feel the presence of a sweet, sweet Spirit in my life. I got to hold and see the body of an angel that was sent to touch our hearts and bless our home and family forever.

I can't help but be so grateful to Heavenly Father for all that He has blessed us with and everything we got to have with Emma.

Maternity Shots

Once again, I am so grateful for our photographer and these amazing pictures she took. I do not enjoy being pregnant, but it has been more than worth it for my children and the same goes for Emma. I'm glad we have these pictures to capture me carrying her.

Family Pictures

My NILMDTS photographer came and took maternity shots of me before I had Emma. She came kind of early in my pregnancy (I think it was the last week of November), so I wasn't showing a lot, but I was so nervous of a stillbirth inside of me that I wanted her to get them done before Emma left us. I'm glad we did them when we did because my photographer ended up having to go on strict bed rest for her own pregnancy soon after that up until about a week before Emma was born.

In addition to the maternity shots, she also took some of our whole family. We just got the CD yesterday and I love them! I will post more of the maternity shots later. But for now, take a gander at our family shots.

Waiting Game

When I first got my blood drawn and sent it off to Duke for additional testing on whether my chromosomes are abnormal, I wasn't worried at all about the results that would come back. But I find now, the longer I wait, the more nervous I make myself about what the results will actually be. Hopefully we'll hear back any day now, but it could be a week or more still.

Emma's Middle Name: Charity

1 Corinthians 13

4 Charity suffereth long, and is kind; charity envieth not; charity vaunteth not itself, is not puffed up,

5 Doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil;

6 Rejoiceth not in iniquity, but rejoiceth in the truth;

7 Beareth all things, believeth all things, hopeth all things, endureth all things.

8 Charity never faileth...

Moroni 7

45 And charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things.

46 Wherefore, my beloved brethren, if ye have not charity, ye are nothing, for charity never faileth. Wherefore, cleave unto charity, which is the greatest of all, for all things must fail --

47 But charity is the pure love of Christ, and it endureth forever; and whoso is found possed of it at the last day, it shall be well with him.

Baby Faith

I've been reluctant to post this because I have issues. Issues with jealousy and pride (along with many other things). I'm working on them, but I still have a long ways to go.

Faith was born on February 19. She is anencephalic, but is still alive (that makes her 13 days old today). At first I really struggled with this whole story because I felt a little hurt that Heavenly Father would bless Faith's family and friends with this tremendous miracle, when all we were asking for was the miracle of Emma being born alive. I'm still not completely over it, but I am able to take more joy in Faith's life now and realize what a miracle and blessing she truly is.

If you want to read updates on Faith, you can check our her mommy's blog at http://www.babyfaithhope.blogspot.com/.

Awkward Encounters

After we found out about Emma's diagnosis, Tim and I agreed that it wasn't best to "hide" it from anyone. While we didn't want to shout it from the rooftops, we also wanted people that we knew and would see more than once to know the truth. It made for some awkward encounters all around.

For example, there was the time that we got our flu shots. They asked if there was a chance that I might be pregnant and I said that yes, I was pregnant. Next they asked when I was due and I said January (because that's when we were planning on inducing) and they then proceeded to list all of the great benefits that the baby would have for the first six months of it's life because of me getting a flu shot. Tim and I just smiled and nodded our heads. A little awkward, but not too bad since they had no idea what was going on.

However, there were many other times that friends of ours would ask if we had found out yet what we were having. When we replied that we were having a girl, usually they would be really excited and ask us if we excited to be having a girl. For strangers, we just told them that yes we were. However, for friends we would then explain to them about Emma's diagnosis. It usually made for an awkward situation because then they felt really bad about it and we felt bad that they felt bad and so on.

I definitely had more of these "awkward encounters" when I was visibly pregnant, however, even though you can't see that I'm pregnant, I still have a few of these moments.

Today I had my post-partum checkup. (Has it really already been 6 weeks since Emma left us?) Before I went in to see the OB, his nurse was checking my weight and blood pressure. She asked me what my baby's name was and she asked what her weight had been (she was recording it in my chart). When I told her that she was 3 lbs. 3 oz. she looked surprised and asked how she was doing now and if she had gained more weight. I didn't want to lie, especially since I knew somewhere else on my chart it had Emma's diagnosis, so I told her that our baby had died. I couldn't help but cry. I really don't like these awkward encounters. The nurse felt bad and I felt dumb for crying. Luckily, it didn't last long. And luckily, my doctor remembered me and was very sensitive about everything. And he was kind of glad to hear that Emma's anencephaly was because of a chromosomal abnormality. While he did say that could lead to problems (if either Tim or I have a balanced translocation - hoping to hear back from Duke this week), he said he was really glad and I should be too that it wasn't a nutritional thing that caused Emma's anencephaly and that I could know that I had been doing everything I should have. While I've never felt guilty about Emma's defect being my fault, it's good to know that my OB doesn't feel that way either.

So I've sidetracked. Anyways, twice in the past week I've had people ask me about how my baby's doing and I've had to explain that she died and I've cried. As far as I see it, there's no good way to avoid these awkward encounters. So while I'm glad that they are less frequent now, I find them harder to deal with now that Emma actually has left us.

The Big Question

The question I get asked all the time (which I don't mind) is how are you doing?

At first I answered everyone with something similar to one of these two responses:

I have ups and downs, but more ups than downs.

Much better than I expected.

Those were my two most common answers because they really spoke the truth about how I was doing. But it's a little different now. I still have ups and downs, with more ups than downs, but I'm no longer doing better than I expected, because I feel like I'm still struggling. And in no way am I saying that I'm not allowed to be struggling, but I didn't expect it by this point, especially because of how well I felt I was doing immediately after Emma's birth.

However, I still really struggle with the fact that she died during labor. I know that Heavenly Father is good and great and that He has a plan for me. But I also know that I don't know what that plan is. And thus, it really makes things hard. I accept that Emma died during labor and that that was Heavenly Father's will, but because I don't know why it was His will, I struggle with it. I still greatly wish that she could have been born alive.

At the time that I said it, I don't think I truly understood how true my statement of "Emma dying inside of me just made this trial ten times harder" would really be. I can't explain why it's so difficult for me, because I don't know why. But it is, and I'm really trying to be an instrument in the Lord's hands right now as I seek to understand His will for me and our family.

Our Final Winner!

Congratulations to Kristen Brady!!! You won a name painting from Camillion Creations!!!

Thank you to everyone for everything! A huge thank you to the sponsors who donated the prizes. Be sure to support them!

Hooray for double winners!

Today's winners are Trine Krueger and Camille Grimshaw!!! Congrats you two!!! You each won a $10 gift card to Pennyroyal Cafe!

I will be emailing you guys later with more details.

The last winner will be announced tomorrow!

Another Winner!

Congratulations to Josie Malquist - the winner for the customized blog header!!!

The Second Winner!!!

Today's winner is Kim Bishop!!!

Congratulations Kim - you won 2 pairs of leg/arm warmers from Knotty Baby Wear!!!

A reminder to all winners: the only obligation you have (besides claiming your prize) is to spread the word about the company you won from. Thanks!!!

Our First Winner!

The $20 gift card from Scribble It goes to Jennifer Doiron!!!

Congratulations! The winner for the Knotty Baby Wear leg warmers will be announced tomorrow.

Showin' the Love - Day 5

Today is our last and final giveaway. It is sponsored by:

This giveaway is very near and dear to my heart. Camille, from Camillion Creations, is someone who I've never met, but whose love, support, and prayers I have felt throughout this experience. She is not only an amazing person, but she has incredible talent. Her work ranges from paintings to prints to art pendants to note cards. You can check out her website and her etsy shop. Also, go here to specifically see examples of the giveaway.

One lucky winner will receive a name painting!!!

Here's how it works:

• Anyone can enter!
• To enter all you have to do is leave a comment
• You can leave one comment per day for each giveaway, but no more than that (meaning you can enter each one up to 7 times)
• If we find that the winner has more than one comment a day for that giveaway, he or she will be disqualified and a new winner will be picked
• Winners will be picked at random
• If you win, you promise to spread the word about the company you won from (not too hard considering all you have to do is tell people that you won something from them)
• All contests will run until midnight on the sixth day following their posting (so this contest ends next Thursday at midnight MST)
• Winners will be announced the day after the contest ends

I hope you guys enjoy! Continue to enter the contests until their ending dates. Winners will be announced after their ending days next week.

I'm headed to Vegas today and while I won't be a winner there (because I don't gamble) you all can be winners for me! I'm excited to find out the winners!

Showin' the Love - Day 4

Today's giveaway is sponsored by:

For a long time, Provo has needed a place for people to grab some inexpensive, healthy food, sit, relax, do homework, listen to music, read good books and meet people who share the same interests. The Pennyroyal Café is a place for that to happen all day and into the wee hours of the night. This cafe has free Wi-Fi internet, shelves of books to read, and over 2000 square feet for seating. This is the latest and greatest thing to happen in Provo. If you haven't been to The Pennyroyal Cafe yet, you need to check it out!

TWO lucky winners will receive $10 gift cards (enough for a meal and a dessert)!!!

To enter this giveaway you need to be local enough to redeem these gift cards or know someone local

Here's how it works:

• Anyone can enter!
• To enter all you have to do is leave a comment
• You can leave one comment per day for each giveaway, but no more than that (meaning you can enter each one up to 7 times)
• If we find that the winner has more than one comment a day for that giveaway, he or she will be disqualified and a new winner will be picked
• Winners will be picked at random
• If you win, you promise to spread the word about the company you won from (not too hard considering all you have to do is tell people that you won something from them)
• All contests will run until midnight on the sixth day following their posting (so this contest ends next Wednesday at midnight MST)
• Winners will be announced the day after the contest ends

I hope you guys enjoy! Come back tomorrow for our next giveaway!

Showin' the Love - Day 3

***Just to clarify - you can enter each giveaway more than once. The rules are that you can enter once each day, so technically you have 7 chances to enter each giveaway. If this is your first time checking today, it means you can enter all three giveaways (even if you entered the other two yesterday or the day before).***

Today's giveaway is sponsored by:

My guess is you've seen their work around the internet, but probably didn't know to give credit to them. Day Dreams by Design is a company that provides both design services and business coaching. What I love most about their work is that everything is original and unique. On their homepage you can easily see the variety and creativity of their work through clients they've had. Day Dreams by Design is who did my new header above! And if you like their designs you're going to love their greeting cards! Check out Line upon Line Greeting Cards.

One lucky winner will receive a Header Design (a $150 value)!!!

Here's how it works:

• Anyone can enter!
• To enter all you have to do is leave a comment
• You can leave one comment per day, but no more than that
• If we find that the winner has more than one comment a day, he or she will be disqualified and a new winner will be picked
• Winners will be picked at random
• If you win, you promise to spread the word about the company you won from (not too hard considering all you have to do is tell people that you won something from them)
• All contests will run until midnight on the sixth day following their posting (so this contest ends next Tuesday at midnight MST)
• Winners will be announced the day after the contest ends

I hope you guys enjoy! Come back tomorrow for our next giveaway!

Showin' the Love - Day 2

Today's giveaway is sponsored by:

Knotty Baby Wear is an etsy shop that sells leg warmers and arm warmers for kids. She offers almost any color, pattern, or design you could want. Her warmers are made for babies, toddlers, and young kids. Click on the above logo to check out all of the neat stuff in her shop!

One lucky winner will receive 2 pairs of leg/arm warmers of your choice!

Here's how it works:

• Anyone can enter!
• To enter all you have to do is leave a comment
• You can leave one comment per day, but no more than that
• If we find that the winner has more than one comment a day, he or she will be disqualified and a new winner will be picked
• Winners will be picked at random
• If you win, you promise to spread the word about the company you won from (not too hard considering all you have to do is tell people that you won something from them)
• All contests will run until midnight on the sixth day following their posting (so this contest ends next Monday at midnight MST)
• Winners will be announced the day after the contest ends

I hope you guys enjoy! Come back tomorrow for our next giveaway!

Showin' the Love - Day 1

Let us begin the giveaways!!!

Today's giveaway is sponsored by:

Scribble it is an online store that covers not only all of your vinyl needs, but anything you could ever want as well. They offer wall art, lettering, and metal art. They also have opened an Etsy shop called Pink Sprinkle Prints that offers printable calendars, note cards, gift tags, stationary and more!

One lucky winner will receive a $20 gift card to their online store!!!

Here's how it works:

• Anyone can enter!
• To enter all you have to do is leave a comment
• You can leave one comment per day, but no more than that
• If we find that the winner has more than one comment a day, he or she will be disqualified and a new winner will be picked
• Winners will be picked at random
• If you win, you promise to spread the word about the company you won from (not too hard considering all you have to do is tell people that you won something from them)
• All contests will run until midnight on the sixth day following their posting (so this contest ends next Sunday at midnight MST)
• Winners will be announced the day after the contest ends

I hope you guys enjoy! Come back tomorrow for our next giveaway!

Happy Valentine's Day!

Okay, Happy early Valentine's Day!

Remember how loved you guys make me feel? Remember how much I have appreciated your love, support, and prayers through everything? Remember how you guys are just so wonderful?

Well I sure do!

I've been trying to think of ways to show you guys how much I love you in return and how grateful I am for you, because sometimes words just don't do it justice.

And while what I've got still doesn't fully express my gratitude, I think you'll still enjoy it.

So here's what we're going to do:

We're going to be having a giveaway!

Stay tuned! Details will be coming soon...

January 15 Part 3

As soon as Emma was born, her teeny tiny body was placed immediately on a blanket that was on my belly. I don't think I can accurately describe how absolutely beautiful she was. I just got to hold her while the doctors did the stuff for the Duke Study (they had to get her cord blood, but leave the placenta inside of me while doing it, etc.). Besides the anomaly on her head, there was absolutely nothing wrong with her. She had beautiful long fingers and toes and her whole body was very slender. Also, her anomaly was only on the top of her head. Besides that she actually had a nice round head in back with the traditional dark hair that my babies thus far are always born with.

Many people who had gone through similar experiences told me that all you would see was your baby’s beauty when they were born, but it was a hard thing to believe until it actually happens to you. But that sure was the truth with Emma. Also, despite the fact that she hadn’t been alive for 13 hours already, her coloring wasn’t bad at all.

Once they were done with the Duke Study stuff, we had Emma measured for weight and length. Then we swaddled her and tried to put a cap on her head. The hardest part was that there was nothing for the front of a hat to grab onto unless we wanted the hat covering her eyes. So we would put the hat behind her head like a normal hat, but then it was just rest in the front right above her eyebrows.

Then our families came in. At first they all just looked on while I was holding Emma, it almost seemed as if everyone was hesitant as to what to say and do. Then I offered to let others hold Emma. She first was held by her grandmothers, followed by her grandfather that was able to be there (due to health, my dad couldn’t make it out here). Then the aunts and uncles all got their turns as well.

I hate to admit this, but as soon as Emma started getting passed around, my focus became food. I was soooo hungry. Luckily the nurses were able to bring me in several snacks and some juice and my family had saved a little pizza for Tim and me. I felt much better after I got some food into my system.

Some memorable moments from that time with family:
- Gerald (Tim’s dad) thanking Emma for being a part of our lives
- Benjamin saying “Emma” (Peter did too, but we already knew he could say Emma)
- Benjamin holding hands with Emma
- The love and spirit that filled the room

After everyone got a turn or two at holding Emma, she was given back to Tim and I to bathe her. Heather, the bereavement specialist from the hospital (who we previously met through Angel Watch) came in to show us how to do this. This was when we really noticed how long and slender she was. It also reconfirmed to us how beautiful she was. It was harder to bathe her than I thought it would be, but I guess bathing any newborn is not that easy, but add in the fact that you are trying to keep on a hat that isn’t on all the way and it makes it just a bit more difficult. Also, Emma pooped! I was so surprised when we tilted her on her side and that black tar stuff was there. We put a super tiny diaper on Emma which in my mind was so adorable.

After we bathed her, we put on the beautiful white dress that my mom had bought. Then we took more pictures! I am so grateful for all of the pictures that everyone took. At this point it was starting to get late, so everyone said their goodbyes to Emma and our families left. I am so grateful to have those wonderful people in our lives.

Tim and I spent a little more time with Emma and then Heather came to get molds of her hands and feet, take some more pictures, and also do some imprints. She took Emma over to the side and started to get everything ready and you know what? I fell asleep! I guess I was so exhausted that I just couldn’t lay in my bed and not fall asleep.

I woke up when the nurse next came in. Heather was about done at this point. I asked the nurse how much longer I had to have my IV in (it was in a really uncomfortable and inconvenient spot). She told me that it would probably be ready to come out after I first went to the bathroom. I was excited because I needed to go the bathroom! So she and Tim helped me to the bathroom and then I came and got back in bed. I then asked the nurse the same question and she said that it would probably be ready to come out when I was ready to go to bed. Yes Please! It was probably 10:30 pm at this point and I was exhausted. Long story short (or not so short), she took it out for me even though I think she probably was supposed to leave it in for longer. Oh by the way, this is a new nurse now. Shortly after Emma was born, Marilyn went off shift. Also, our nurse from the entire night before stopped in to say hi and thank us for our example to her as she was back on a shift again.

Heather gave Emma back to us and said that she would bring the molds back when they were dry. Tim got a roll-away bed, Emma got a bassinet, and we all went to sleep.

I slept wonderfully! I did have to get up several times to go to the bathroom in the middle of the night (I think because I drank so much after Emma was born), but I kind of liked it because after every trip I would stop and spend some time with Emma before going back to sleep.

January 15 Part 2

We were woken up around 7 am when my doctor came in to check on us. We now had a new nurse, Marilyn, but this was the nurse that we had met with before in our meetings with Angel Watch. I think I was dialated to a 1 or a 2, so the doctor decided that we would stop with the cytotech and do something else. I'm not quite sure what everything is called, but the essence is that they stuck a catheter in me that had a balloon on it. They then inflated the balloon once it was inside of me. Since Emma did not have the head pressure of most babies, this was to assist in putting pressure on my cervix from the inside.

At this time, we decided to call our families and to tell them. Tim was in charge of informing his family and I was in charge of informing my family. My mom didn't answer her phone, so I next tried my sister Erika. She didn't answer either but called me right back. I broke down in tears as I told her, "it's done." Quickly realizing that this didn't explain much, I told her that Emma was still inside of me, but that she had already passed away.

Honestly, I hated making that statement. It was still such heartbreaking news for me, but I also knew that it would be heartbreaking for others as the word was passed around. I asked my sister to make sure that the rest of my family was informed.

Tim then posted here on our blog that Emma had died. He had actually written the post soon after the actual passing happened, but when we decided to hold off on calling our families, we also decided to hold off on posting about it.

Soon after our immediate families were informed, family visitors started to arrive. We laughed and we cried together. I am so grateful for what wonderful families Tim and I come from. The atmosphere was peaceful, reverent, and respectful, but also one filled with happiness, laughter, and joy.

My mom stayed the rest of the day with us in the hospital room while other family members came and went. It was nice because I didn't really feel like being alone, but that way Tim could go get something to eat for breakfast and lunch without leaving me by myself. My mom was also able to go and get things to eat as well.

Things throughout the day progressed, but very slowly. I varied in my emotional and physical strength. As you can see from the other posts, neither Tim nor I got a good night's rest. Maybe two hours here, an hour there, 30 minutes there, and that was probably it. So I dozed on and off throughout the day. Additionally, I really just don't like epidurals. While it was so nice not to be in extreme pain, I was still in some pain from all of the cramping and I was quite uncomfortable. I probably had Tim help me flip over to my other side every half hour in order to try to get a little more comfortable. Oh, and by this point I was extremely hungry! I hadn't eaten since noon on Wednesday the 14th.

Throughout the day, I would also have Tim check this blog and read me some of the comments. As sad as the situation was, I don't think I can truly express how much the love and compassion and pure numbers from the comments uplifted me. It really lightened my heart to know how many people were praying for and thinking about us that day.

As late afternoon came, I finally was dialated to about a six, but my water had broken naturally, so we hoped that the labor would speed up a little. Also, the balloon catheter came out at that point because the balloon was now smaller than my cervix.

The majority of our families went home to go rest for a while and then to eat dinner. Around 4 I was dialated to about an 8 and then around 5 pm (24 hours since we had checked in) I was a 9, pushing 10. My mom called everyone to let them know that it was almost time. Around 5:15 I was dialated to a 10 and my doctor (who had been informed how close I was) arrived minutes later. My mom left the room to go join the rest of our family (who were eating pizza in the waiting area) and I got prepped to push.

My doctor realized how much pain I was still in however and called for the guy who gives epidurals (sorry, I'm not even going to attempt to spell it) to give me a second dose before I pushed. After I got that, my OB waited a little bit to let it get into my system. He went over with the nurse what they needed to do for the Duke Study while we waited. Finally, it was time to push. It only took a push or two to get Emma's head out. She was face up, but because of how small she was it didn't really matter. However, her shoulders did get stuck. So the doctor had to work a little to let her shoulders loose. But a couple of minutes and a few good pushes later, Emma Charity Bishop was delivered. Her delivery time was recorded as 5:33 pm.

January 15 Part 1

If you remember from this post, January 15th started out with me feeling a little on the miserable side. My nurse had been saying for several hours that they would give me an epidural as soon as I wanted and that I didn't need to tough it out. I don't know how to best explain this other than to say I'm not a huge fan of epidurals. However, I am a major wimp and don't handle pain well. We talked to my nurse a little after midnight and decided that it might be best for me to get an epidural. That was administered to me around 12:30 am and was followed by my next dose of cytotech. I was then able to sleep for a little bit.

Around 2 am, my nurse came in again and told me that Emma's heart rate had dropped to about 80 bpm (remember, normal is 120 to 180) and it was not picking up at all. She said it wasn't dangerous, but it did worry her a little. So our nurse called my doctor and he said that they should back off of the cytotech for a little while because the dosage might be too much for Emma to handle. (I should also insert here that up to this point my doctor had called the nurse a couple of times to check on me). So the nurse told me that was the plan and I went back to sleep.

Around 3:30 am the nurse came back in because she was no longer picking up a heartbeat from the monitor. This had happened a few times before and after adjusting the monitor, we were able to pick something up again. However, as the nurse continued to adjust the monitor, she was not able to pick anything up. She told us that she was going to do an ultrasound to check on Emma.

She brought in the ultrasound machine and found Emma's heart and focused in on it. I could see the screen and saw that the heart was moving in some sort of manner, but I knew it wasn't nearly as normal or fast as it should be. Our nurse said that she was going to bring in the head nurse to take a look at it with her.

The head nurse came in and it took them a while to focus in on Emma's heart, but finally they did. Neither of them looked at me, but they started to discuss and explain to Tim and I how Emma's heart was really only fluttering and that as they counted, it was less than 20 bpm. They went on to explain several other things about what was going on. They did not say that she was close to death, but both Tim and I knew it and I couldn't help but begin to cry. The nurses then turned to face me and while nothing was said, we all knew that each other knew that this was the end. I began to cry some more. Our nurse said to us, "I think we should stop monitoring Emma, is that okay?" We agreed and our nurse turned off the ultrasound machine. I felt one last kick from Emma in the seconds after the machine was turned off. That was at 4 am. Emma's time of death was listed as 4:01 am.

The nurses left the room and Tim and I cried together and held each other and cried some more together. I don't remember all the words that were exchanged between us, but both of us were heartbroken. Tim said a prayer and I also don't remember much of the prayer, but I do remember that he asked a blessing upon all of the people that were praying for us. I am so glad he did that because I knew how much Emma was loved by others and I knew that we wouldn't be the only ones who were heartbroken.

And yet, as heartbroken as I was, I have to say that I was filled with such an immense peace. Going into labor, I thought I would be devastated if Emma didn't survive the birth, but I wasn't. I know that Heavenly Father gave me that peace to ease the burden and oh how grateful I am for that. I don't think I can accurately describe the peace I felt, but it was there, despite the heartache.

As Tim and I continued to talk, I had a whirlwind of thoughts and feelings. One major one was I wanted to go home and be done. I didn't want to be in the hospital anymore. However, that wasn't possible. I also sulked for a little bit about how much harder the whole situation just became. And then, once again, I thought of everyone who was praying for us and my heart ached for all of you.

I need to add here that words cannot accurately describe what exactly went on after about 3:30 in the morning. However, I want to do the best that I can so that I have a written record of it. Additionally, I'm not ready to share with the world all of the experiences I had at that time. So because some things are too sacred and personal, I'm not sharing them.

We decided not to call our families right away. It was now about 4:45 am and we knew that our news would be upsetting enough that it might disturb people's sleep, so we decided to wait until later in the morning.

Because Emma had already left us, I was given one more dose of cytotech around 5 am. The nurse then reviewed with us Emma's heartbeat patterns since the time we had arrived (at this point, over twelve hours ago) and then Tim and I went to sleep.

Update on my Dad

I've been busy this week. So busy in fact that I planned on going grocery shopping on Monday, but I didn't have time to do it. It got pushed back every single day as I continued to not have time for it. Finally, tonight (Friday) I quickly ran to the store after Tim got home because I realized that I didn't have enough cheese for our meal.

But I wanted to post just a quick update on my dad. According to what I've been told, the surgery went better than expected. In my opinion, that is very good news! They just started him today on the anti-rejection medicine and apparently it can give you some serious and nasty side effects. For my dad, it's causing him to sweat and sweat and sweat. So much so that he soaked through at least two sets of bed sheets. I say at least because this update was given to me this afternoon and it's now evening.

So I thank everyone for their prayers and love!

It's Liver Day!

A liver became available for my dad last night and he has now begun the six hour surgery process. Prayers for him and his doctors are welcome and invited. Thank you!

Emma's Chromosomes

I plan on finishing the rest of the labor and delivery story later. I doubt anyone's at the edge of their seats to hear what happened next, because most of you already know the general story. However, I want to have it recorded before too much time passes and I also found it a little therapeutic to take the time to think about it and start to write it out. So it will be coming.

In the meantime, we got the results back from Duke University. As many of you know, we found a study that they were doing on anencephaly and decided that we wanted to participate. It required Tim and I to give them samples of our blood, answer lots and lots of questions in a telephone interview, and then donate Emma's cord blood for them to test after she was born.

As we suspected, Emma did have a chromosomal abnormality. Our perinatologist was the one who said she thought Emma might have one because in addition to the anencephaly, she had several other things that were wrong. The perinatologist suggested that Emma might have one of the trisomies (most likely 13 or 18). We opted out of the genetic testing anyways because only 5% of babies with anencephaly end up having something abnormal in their genetics. But when we decided to participate in the Duke Study, we learned that they would do it for us.

So the results. Emma did not have a trisomy. Emma was missing part of her Chromosome 1. The exact result was: 46,xx,del1p36. That means that she had 46 chromosomes, she's a girl (xx), and that there was a deletion on chromosome 1 on the short (or p for petite) arm. The 36 further specifies the spot, but obviously it was the end.

We found this out last Friday, but I was just able to speak with the geneticist again today to ask her more questions and to clarify some more things.

Here's what I learned:

In the 5% of babies with anencephaly that they find a chromosomal abnormality, the majority of them have Trisomy 18. That would mean that their test results would read 47, xx (or xy in the case of a boy). The other babies that fall in that 5% but do not have Trisomy 18, usually have random findings. Emma is the first baby in Duke's study (they've been at this since '93 or '94 I think) that has had a deletion on chromosome 1. However, the geneticist did some research and there was (or is, I don't know) a study in California and they too had one anencephalic baby that had a deletion on Chromosome 1. I guess just two babies is enough for the geneticist to think that there might be something significant there. But my guess is that will take a long time to figure out.

Now to enlighten you about Chromosome 1 and the actual deletion. Chromosome 1 is the largest human chromosome and represents about 8 percent of the total DNA in human cells. There is a specific syndrome for this deletion. It is called 1p36 deletion syndrome. However, neural tube defects are not associated with this syndrome. It is one of the most common deletion syndromes and occurs in one every 5,000 to 10,000 births.

What does it mean for us? Duke University is sending us another kit for some blood work to be done. They want to do some more testing on my blood. Because of their lack of funds right now, they are not going to test Tim's blood initially. If my results come back normal, they still might not test Tim's blood, but they'll decide when we get to that point.

Here's what wikipedia had to say on the matter:

Most deletions in chromosome 1p36 are new mutations, that occur before fertilization, during the formation of gametes (eggs or sperm). There have also been reports of patients with 1p36 deletion syndrome whose parents have a balanced or symmetrical translocation. This means a portion of one chromosome is transferred to another chromosome, so the parent has the "36" portion of chromosome 1 attached in an alternate location. When this occurs, cell division creates gametes that are missing a piece of 36.

In new mutations, the mechanism causing chromosome breakage is unknown. Deletions of paternal origin (father) are larger than the deletions deriving from the maternal (mother) chromosome. The majority of deletions are maternally derived. There do not seem to be differences in the clinical manifestations (the symptoms or observable conditions which are seen as a result of 1p36) based on whether the deletion is on the paternal or maternal chromosome.

I should also mention that the majority of facts from this post were either given to me verbally by the geneticist at Duke University that we are working with or taken from the wikipedia page on 1p36 deletion syndrome.

I'm not too worried about it at this point. Mostly because I don't think they'll find anything wrong with my chromosomes. Both the geneticist and the information from wikipedia lead me to believe that it happened on its own. But secondly, even if they do, I know that Heavenly Father is watching out for me and my family.