Emma's Story

Updated Review

2011-09-26T09:39:00.000-07:00

As posted below, I was invited to try Time4Learning's online education program. I found it when seeking out educational enrichment ideas for Peter. He is a very smart kid and we wanted some way to enhance his education. Both of my older sons took turns trying it out. They both really loved the math section. Neither one of them wanted to try the language arts or science sections and I didn't force them to much since we were just trying it out.

I think this program would be great as a supplement to an education. Whether it be for a home-schooled child or a publicly educated child. It would help to reinforce what they are learning in a fun and interactive way.

We were looking for something that doesn't supplement but enriches. Because Peter already knows everything in school we were looking for something that could help him continue to move ahead at his level. Unfortunately, I don't think this program is thorough enough to provide us completely with that. I think it could more thorough if it had more than one lesson on each subject. But as it was, Peter would go through the lesson doing all of the activities and answering the questions. Then he would take the quiz and that was that. While it doesn't take him more than 2 or 3 times to have something down, I do think he would need it at least 2 times.

All in all, we thought it was a great and fun program. It just didn't fit our needs exactly but for anyone looking for something to supplement their child's education I would definitely recommend Time4learning.com.

Review

2011-08-26T18:09:00.001-07:00

I've been invited to try Time4Learning's online education program for one month in exchange for a candid review. My opinion will be entirely my own, so be sure to come back and read about my experience! Find out how to write your own curriculum review.

January 15

2010-01-15T12:56:00.001-08:00

It's been a year now since Emma's passing. Our lives have changed so much since then, yet I still feel like it was just the other day. But today it has been one year and I am celebrating! In a little bit I plan to make her a birthday cake with the boys. I also hope to stop by the cemetery later today. I don't know why, but I don't feel like today should be a day filled with sadness. Instead I feel it should be a day filled with joy. I want to celebrate the amazing spirit she was.

I don't think I'm any different than other moms who have lost children in saying that a single day hasn't gone by that I haven't thought of her. I like it that way. Thinking of her doesn't make me dwell on the sadness of losing her (usually). More often than not it brings a smile to my face. She's always with me.

Do I miss her? Oh yes. Do I wonder what life would be like if she hadn't died? Definitely. But things are the way they are and I know that someday we will see her again.

So today I celebrate you Emma!

Emma's Headstone - It's In

2009-08-10T19:03:00.000-07:00

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

2009-07-10T18:18:00.000-07:00

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

2009-06-23T07:44:00.000-07:00

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!!!!

2009-06-08T18:38:00.000-07:00

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

2009-06-04T20:21:00.001-07:00

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

2009-06-02T14:03:00.000-07:00

Congratulations to Emma!

You are going to be a big sister!

Thank You Thank You Thank You!

2009-05-25T19:02:00.000-07:00

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...

2009-05-21T21:18:00.000-07:00

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

2009-05-20T08:00:00.000-07:00

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

2009-05-12T11:09:00.001-07:00

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

2009-05-08T08:15:00.000-07:00

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

2009-05-07T20:59:00.000-07:00

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!

2009-05-05T20:20:00.000-07:00

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!!!

2009-04-24T13:11:00.001-07:00

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?

2009-04-21T11:13:00.000-07:00

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

2009-04-15T12:10:00.001-07:00

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

2009-04-13T19:56:00.000-07:00

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

2009-04-13T07:28:00.000-07:00

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

2009-04-07T21:52:00.000-07:00

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"

2009-04-06T17:15:00.000-07:00

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

2009-04-01T10:06:00.000-07:00

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

2009-03-29T09:29:00.000-07:00

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

2009-03-25T08:25:00.000-07:00

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

2009-03-16T19:57:00.000-07:00

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

2009-03-16T14:19:00.000-07:00

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

2009-03-12T12:17:00.000-07:00

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

2009-03-11T07:41:00.000-07:00

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

2009-03-08T19:50:00.000-07:00

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

2009-03-04T19:57:00.000-08:00

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

2009-03-02T12:57:00.000-08:00

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

2009-02-27T12:21:00.000-08:00

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!

2009-02-27T07:54:00.000-08:00

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!

2009-02-26T06:51:00.000-08:00

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!

2009-02-25T08:10:00.000-08:00

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

The Second Winner!!!

2009-02-24T07:49:00.001-08:00

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!

2009-02-23T08:10:00.000-08:00

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

2009-02-20T06:42:00.000-08:00

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

2009-02-19T06:28:00.000-08:00

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

2009-02-18T06:57:00.000-08:00

***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

2009-02-17T06:53:00.000-08:00

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

2009-02-16T07:01:00.000-08:00

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!

2009-02-13T13:33:00.000-08:00

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

2009-02-11T19:59:00.000-08:00

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

2009-02-10T12:47:00.001-08:00

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

2009-02-08T19:48:00.000-08:00

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

2009-02-06T19:26:00.001-08:00

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!

2009-02-04T10:15:00.000-08:00

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

2009-02-03T13:29:00.000-08:00

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.

January 14

2009-02-02T12:42:00.000-08:00

We had scheduled with the hospital for me to go in at 5 pm but were told that they would give us a call when they had a room ready for us. My doctor has also instructed me to eat lunch, but then to eat nothing after noon. At 4 in the afternoon, I was drying my hair when Tim came in to tell me the hospital just called and they were ready for us. I don't know why it shocked me so much, but I was startled that they were calling an hour earlier. I quickly finished drying my hair and packing everything we needed.

Before we left for the hospital, Tim gave me a blessing, with his dad and my brother there as well. I remember hoping that finally the Lord's will would be revealed in that blessing. But once again, it was not. I was blessed with those things I would need though (peace, comfort, strength).

We said goodbye and left Peter and Benjamin with my mom, Tim's parents, and a couple of our siblings. I was not worried at all about how they would do. They were loving the attention of everyone.

We arrived at the hospital and had a short delay in checking in because some information on me was missing. But after they got that taken care of, we were shown to our room. The initial nurse (the one who showed us our room) wasn't aware what was going on, as she had the impression we were like most people and were just needing prostin gel before being induced in the morning. However, another nurse then came in and she was aware of the situation.

Then my doctor came in and checked me. I was not at all effaced and just a fingertip dialated. He ordered that I be given cytotech every 3 hours. Tim and I knew we were in for a long night.

They put an IV in me in a really annoying spot. It was right on the inside bone on the wrist of my left hand. Next they gave me the first cytotech pill (it's given vaginally) around 6:30 pm. Then the visitors arrived! My sister had flown in by this point and my other sister had picked her up from the airport and brought her down. So we had my mom, Tim's parents, my sisters and brother, Tim's sister, and our two little boys. It was fun to have lots of family there to hang out with. The majority of them left when it became obvious that my boys needed to get home and to bed, but my siblings stayed around and we played the Game of Life. Even though they didn't let me win, it was still fun.

During the game, I started to feel a little cramping. At first I thought they were contractions because it was coming and going and the monitor would pick them up, but then it became less of a consistent coming and going and more of a constant irritation. However, it wasn't that annoying to begin with and I was excited that things were beginning.

My siblings left sometime around 9:30 and they gave me the second dose of cytotech at that point. While the pain from the cramping was getting worse, Tim and I decided we would try to get some rest (despite the fact we knew I'd be getting a new pill every 3 hours).

However, rest never really came. After the second pill, my uncomfortableness got worse. I also had to go to the bathroom several times and needed Tim's help with the IV line. Additionally, Emma's heartbeat would begin to fluctuate and our nurse would come in and let us know that it wasn't holding steady where it should be at. But every time, Emma seemed to get it back up to normal, so then the nurse would come back in and let us know that. (Some people might be annoyed by that, but I'm so grateful that our nurse was honest with us). Also, sometimes the monitor would stop picking up Emma's heartbeat and the nurse would come back in and adjust the monitor until she picked it up again.

As the time passed, I became more and more miserable from the uncomfortableness/cramping/contractions. I didn't really know what was going on because it wasn't like my previous labors where there were definite painful contractions. This was just an all around yucky and hurting feeling. Around 11 pm, the nurse gave me a dose of fentanyl to help with the pain. It was wonderful and knocked me right out and I got probably a glorious 45 minutes of sleep! However, it was done after those 45 minutes and I was right back where I had been before: miserable, tired, and in much pain.

I'm a Winner!

2009-01-31T20:15:00.000-08:00

I have several random thoughts in my mind that I've wanted to blog about, but I haven't found the time yet to sit down and think them out well enough to write about them. However, I did want to give a huge thank you to everyone who voted for me in the seriouslysoblessed.blogspot.com makeover contest. While I was not the grand prize winner, I still get some pretty awesome stuff. Next week is my birthday and I'm counting my winnings as part of my birthday celebration! I'm super excited for everything that I won.

I get:

gift card for 2 to Cafe Rio
gift card to Shade Clothing
anything of my choosing from the Pretty Kitty
a hoodie sweatshirt
a facial and pedicure from Jacque Gunderson at Visage Skin and Beauty Bar
a family photo session from Wendy Whitacre at Blue Lily Photography

I am so grateful that I got to be a part of this contest. Thank you to everyone who nominated me and to those who voted for me! Also thank you to those who voted for the other contestants as well. Those were some amazing women who also could use some major pick-me-ups. I'm glad we all get to be spoiled! And of course, thanks to TAMN at seriouslysoblessed and the sponsors who donated their stuff.

Okay, basically thanks all around. People really do make me feel so loved and cared about and it is just an amazing thing. From the hugs, to the cards, to the messages, to the goodies and dinners, to the gifts, to the prayers, to everything else. Thank you.

What Now?

2009-01-29T07:37:00.000-08:00

I feel a little directionless right now. Actually, to more accurately describe it I guess I should say that I'm confused as to which direction to take.

I am a young, stay-at-home mother of young children who has just had this life-changing experience by carrying and then holding one of Heavenly Father's choicest children.

And yet, here I sit, a young, stay-at-home mother of young children, doing the exact same things I did before Emma entered our lives. I feel like life should be different. More than that, I think I want life to be different. But I just don't know. Where do I go from here?

2009-01-27T13:26:00.001-08:00

I've been feeling extremely grateful lately. Here are some of the things I'm thankful for:

an occasionally cramping and sore body - because it means my body is healing
drawings on many surfaces in our house - because I have children who are developing
a sink full of dishes - because I have food to eat and to feed my family with
a tired husband - because it means he got up early with the boys and let me sleep in
a flabby stomach - because I am able to bear children
endless loads of laundry - because we have clothes to wear
falling behind in the makeover contest - because an amazing woman is going to get a much needed pick-me-up
hurtful comments - because I live in a country where people are free to express themselves
a high heating bill - because we have stayed warm this winter
painful trials - because they help me to grow stronger
my exhausted body - because I get to stay home and play with my children
depleted funds - because it means my husband is getting a good education
sore knees - because I have been in prayer with my Father in Heaven
a dirty home - because I have children
a busy husband - because he is serving the Lord and working hard in school
snotty noses - because my children have healthy immune systems fighting off colds
awkwardness - because I have people who love me and care about me and want to help

There is so much more that I am grateful for. While the trials have been hard, the blessings have been much greater. I know without a doubt that our Father in Heaven is mindful of us and watching over our family at this time.

The Little Things

2009-01-25T20:19:00.001-08:00

There are a few little things about Emma that I hope I don't ever forget.

1. Her long and slender feet, toes, and fingers. I was amazed at how long and skinny they were. They were so beautiful too.

2. Her hair. Both of our boys were born with heads full of thick, dark hair. I joked how I would one day have a girl that was completely bald. When we found out about Emma's diagnosis, I realized that my joke might actually be true. However, Emma's anomaly was really only on the top part of her head. On the back of her head there was plenty of hair and she had a few little wisps around the top of her head.

3. Her beauty. Others who have gone through similar experiences will tell you how beautiful your child will be to you, but it really is hard to believe until you're in that moment. Emma had the potential to look really weird, yet she didn't at all. She was beautiful and perfect, except for a small opening on the top of her head. I loved holding her and just staring at her.

4. Her little bum. This is going to sound funny, but because she was so tiny, her little bum was so adorable! Tim thinks I should add in the fact that she pooped (which I was surprised about). We had her wrapped warmly in a blanket most of the time, but even through the blanket, I could feel where her tiny little bum was. It was so cute.

5. Her final kick. A little after 3:30 in the morning, our nurse came in because the monitor was no longer picking up a heartbeat from Emma. This had happened several times prior to this point, but she had always been able to find something after she moved the monitor around for a while. This time, however, she was unable to pick anything up. She brought in the ultrasound machine and found Emma's heartbeat. She didn't say anything at that point except that she was going to go get the head nurse to take a look. When the head nurse came in, it was obvious to me (I could see the screen they were looking at) that Emma's heart had little left in it. It was still beating, but at less than 20 beats per minute (normal range was 120 to 180). Not too much was said, but it was decided that we would stop monitoring Emma (with the underlying notion that she was very close to her death). That was at 4:00 am. As soon as they turned the machine off, I felt one last kick. Emma was pronounced dead at 4:01 am. I am so grateful for that last little kick of love that she gave me.

My Musings

2009-01-25T17:03:00.000-08:00

I have another blog that I've had for a couple of years that is private. Last Thursday I posted the following on that blog. I was nervous at first how my thoughts might come out, but I think I'm okay now posting my thoughts and feelings to the "public." This was written one week after our Emma left us.

"The boys are asleep in bed, Emma is in Heaven, and Tim is at a basketball game. I'm finally taking some time to think and write out various thoughts. I've been writing a lot on Emma's blog lately and not much on this blog. I originally started Emma's blog so that I could keep family and friends updated on what was going on. Also, because of how devastating the diagnosis was, I felt like I needed somewhere else to talk about Emma. I felt guilty at first having anything happy on this blog that might follow any news/thoughts/updates on Emma. I now feel differently, but I already have the other blog for Emma and I know that people beyond my knowledge read that blog, so I don't want to stop doing it. In fact, on January 15th Emma's blog was visited over 800 times. Wow. There is strength in numbers. And yet, despite the numbers, our prayers were not answered the way we desired.

I've thought a lot on that since Emma's passing. I knew I didn't have enough faith. I gave it my all, I really did, but I still felt like I fell short. But I knew that the combined faith of everyone was enough. My amazing young women even got together on their own and were all fasting for Emma and me. So why weren't our prayers answered? Don't get me wrong, I don't doubt. The fact that I didn't get what I wanted is not shaking my faith. I just honestly want to know why we weren't granted the miracle we desired. I know Heavenly Father could have done it. As usual, I don't think this is coming out like I want it to, but oh well.

After Emma died during labor, I had a whirlwind of thoughts. But right now two are coming to my mind. First of all, I thought of everyone who had been praying and fasting for us. And I thought of all those people who's prayers were not being answered the way they desired. Second, I thought about the fact that her dying inside of me just made this trial ten times harder. At least in my opinion. But maybe Heavenly Father knows me better than I do. Maybe I wouldn't have been able to watch my child die with my own eyes. Who knows. But I've wondered why things had to get harder.

And now my random musings move on. My labor with Emma was miserable. I was in labor for 24 hours and it hurt pretty soon after the start. I was given cytotech to ripen my cervix. Apparently (I didn't know this until in the moment), cytotech can cause constant cramping as it ripens your cervix. And cause it did. And the biggest pain was that there was no relief to it. As soon as Emma passed, I wanted out of that hospital. I was done being miserable, I was done hurting and I just wanted to go home and be with Tim, Peter, Benjamin, and Emma (still inside of me). Unfortunately, it wouldn't have worked out that way. Emma passed away 11 hours in to the labor and so I still had 13 hours to go after she passed. Several times I had feelings of "what's the point?" It was hard both physically and emotionally.

Spiritually? This really hasn't been that much of a struggle for me spiritually. I know this is Heavenly Father's plan. I know that this will make me stronger (yet I think that will take some time to actually come true). I know that families are forever. I know that I have a Savior there for me. And really, as much as I wanted our miracle to be a living and breathing Emma, I know that the miracle is the Atonement of Jesus Christ and the opportunity to be sealed to our families forever.

Tim is amazing. He's not perfect and I'm even further away from perfection than he is, but he's perfect for me and I'm so glad that I've not been alone through this trial. I'm grateful that we've gone through this together. He is wonderful.

And my final musing for the evening? This has been the hardest thing I have gone through in my life thus far and I pray that others don't have to go through similar trials. Yet, I wouldn't change it for the world. Emma has become such a part of me and our family and she has taught me so much and I have learned and grown so much from her and everything else. I love her."

Talk About a Pick Me Up

2009-01-23T15:08:00.001-08:00

I've been chosen as a finalist for a complete makeover (hair, makeup, clothes, photo shoot, and a few more things). If you go to seriouslysoblessed.blogspot.com, you can see me and the five other finalists. I would like to ask for your votes, but I feel almost guilty doing so because I think the five other women deserve it just as much if not more so.

So if you can stand to not read the other entries, then vote for me please! If you can't resist and you read the other entries, I'm still asking for your vote, but I'll understand if you vote for someone else because those are some amazing women who could also use a good pick-me-up.

Thanks!

Emma

2009-01-22T15:13:00.000-08:00

Day One

2009-01-21T20:30:00.000-08:00

I called today day one because it was the first day that I had to be on my own. All of our family that had traveled here for Emma's birth and funeral left at some point yesterday. We loved having them here and were so grateful that they all came, but we were also ready for the peace and quiet in our home to be back (okay, as much peace and quiet as you can get with two little boys running around). However, the hardest part for me was the fact that Tim had to go back as well. Being a student, he was excused from his classes for this, but it still doesn't mean he doesn't have to make up the work. He has to get it all done, so the more he misses, the harder it makes it. And Wednesday is probably his busiest day, so it made sense that he needed to go back.

Since I like to plan ahead, I made sure that I had things to do. I figured I would much rather have my time filled with things and then decide not to do them if I'm not up for them than have nothing to do and sit at home being depressed when I needed to get out. So this morning there was a playgroup that I attended. Things were going great until a mother who I only know a little bit asked me how my pregnancy was going. I didn't even think before I responded, but I said, "It's done. She died last week." And then I started into tears. I felt so bad for the other mother because she felt terrible that she had asked and that I was now crying and what not. I'm hoping that she started to feel less bad after I calmed down. While I know that it's okay for me to cry and be sad, I still don't like doing it in front of other people.

While at playgroup, Tim called to see how I was doing. I was really sad to miss his call, but it meant so much to me that he was checking in on me. I know a lot of people think that they have the most amazing husband and I am definitely one of those. But more than anything, Tim is the perfect husband for me. I missed him so much and couldn't wait until he got home, but I was so glad that he called to check on me.

This evening, I went to a function at our church that was for the women. It was nice to see so many friendly faces there. I did tear up a few times again, but it was also nice to talk to people and to be openly honest with them that I'm having ups and downs physically, mentally, and emotionally. And on that note, I'm glad that I've recognized and am allowing myself to have both the ups and the downs and to be okay with it all. I don't know what the "healthy" way to go is, but for me, I feel like that is working.

In Remembrance of Emma Charity Bishop

2009-01-20T19:11:00.000-08:00

We held Emma's memorial service today and it was everything Tim and I could have hoped for and more. We thank all of you that were there and we felt the love of many that weren't able to be there. I know I say this a lot, but the love and support we have received by so many has been such a strength and support to us. Thank you so very much!

There is an organization called Now I Lay Me Down to Sleep. I have a link on the side to their webpage. For anyone who is going through a similar experience, I highly recommend contacting them. They are a group of professional photographers who donate their time and talents to families who have received a poor prenatal diagnosis.

We had the wonderful opportunity to work with a photographer named Julie. She has been amazing to us, despite the own trials she has been facing in her life the past several months. She came and took maternity photos, then came to the hospital to take pictures there, then she worked tirelessly to get us the pictures by Emma's funeral today. She also made a DVD with a song and a slideshow of the pictures she took which we played at the memorial service today. You can see more of her work at http://www.juliekayephotography.com/. The above three pictures were all taken by her. They are priceless and I am so grateful for everything she has done for our family. Thank you.

Emma's Memorial Service

2009-01-18T19:13:00.000-08:00

We are having a semi-private/semi-public memorial service for Emma. We want to make sure that everyone who would really want to be there will be there, but we don't want to make it a public invite. Unfortunately, we haven't really been able to figure out a good way to go about this.

Therefore, we are planning on having it this Tuesday (January 20th) in the morning. If you are interested in attending, you can email us at tiffany.bishop@gmail.com and we will give you the information on place and time.

Our Beautiful Angel

2009-01-17T08:29:00.000-08:00

Emma Charity Bishop

2009-01-15T19:23:00.000-08:00

Emma Charity Bishop was born still at 5:33 pm this evening, Thursday January 15, 2009. She was 3 lbs 2.5 oz and 15 in. She is beautiful.

Tiffany is feeling and doing well. She appreciated her dinner this evening and we have enjoyed holding and seeing Emma.

A short update

2009-01-15T15:35:00.000-08:00

We are still in the hospital waiting for labor to proceed far enough for Emma's body to come out. Things are looking good to work out in the next hour or two. Then Tiffany will finally be allowed to eat something after not eating since lunch yesterday.

One More Angel in Heaven

2009-01-15T04:05:00.000-08:00

Emma left us this morning. At 3:30 am the nurse noticed the heart rate lower than it should be. She spoke with the doctor and they were going to ease off on the inducing medication. Then at 4:00 she couldn't find the heart beat with the little belly monitor. She brought in the ultrasound machine and found that Emma's heart had slowed to about 40 beats per minute and the beats were only feeble attempts of the muscle to keep going. The pressures of labor were too much for her little heart, and Emma gave one parting kick to her mom.

Tiffany and I are heart-broken but peaceful. There isn't a lot to say, except that we thank our Father in Heaven, who is God of all, for the great blessing it has been to grow up a little with little baby Emma.

We want to thank everyone for their prayers; they are felt. They have not gone unheard or unanswered.

I found a poem the other day, for which I am also thankful, a portion of it I leave here now:

The Earth would be dreary without them,

The world all a desolate waste,

What wonder bright angels about them,

Call home to the Father in haste?

Oh mothers! Your treasures most holy

Which seem not a virtue to lack,

Almost like, “The Lamb” meek and lowly—

What wonder God wishes them back?

What wonder he chooses the purest,

The happiest, dearest, most blest?

In His home all things must be surest—

He wants but the truest and best.

He plans for us Immortal pleasures,

As emblems our babies are giv'n,

He kindly secures us our treasures—

He knows we should want them in heaven.

Oh! The children! Our light and our blessings,

Without them the world would be nought;

Through natures rich chambers and dressings

Would sweetness all vainly be sought:

Our hopes and delights were all riven,

We should know only doubt and despair—

Who would ask for a portion in heaven,

If children were not there?

And this snippet from another poem by the same author:

We can live though bereft of the blessings,

Which seem more than half of our lives;

The babies, the youths and the maidens,

Even parents and husbands and wives;

Our prophets indeed may be taken

And we bow ‘neath the chastening rod,

‘Till the blessed, sweet Comforter cometh—

We can do without all but our God!

In the hospital - by Tim

2009-01-14T20:54:00.000-08:00

Tiffany was admitted to the hospital around 5:00 this evening (Thurs). She has been given cytotech to prep things for being induced tomorrow morning. Tonight may not be fun with new doses every three hours, but it seems that things are moving along as hoped. We thank all of you for your continued prayers and thoughts. You mean a great deal to us at this time.

They're Coming!

2009-01-13T07:40:00.000-08:00

When my parents first heard of Emma's diagnosis (and we told them soon after we found out), they wanted to be right here with us. Unfortunately, they live a 24 hour drive away. That wasn't possible, and it probably wouldn't have been for the best either. Tim and I needed to cope together. My mom was able to come out a month or so later to just be of help and both of my parents planned on coming out for Emma's birth and funeral.

Unfortunately, my dad (who has had poor health off and on for the last seven or so years) continued to get more sick. To the point where he was hospitalized several times and it was determined that he needed a new liver. He went through all the tests and procedures to qualify and is now on a liver transplant waiting list! Great news! Sadly, it means he can't travel anywhere that is more than 4 hours away from his hospital (24 minus 4 doesn't quite make the cut). We've known for a while that my dad wouldn't be able to make it out here.

My mom has been pretty torn about whether or not she could and should come out. She was originally planning on doing so, but my dad's health continues to deteriorate. Plus, she wants to be there for him when he goes in for his transplant surgery. A while back (before my dad's health got much worse) she bought a ticket to fly out here yesterday. On Sunday she told us that she would not be using that ticket. Then yesterday she and my dad went to the doctor's. While my dad was having a really rough time, they were told that he is dehydrated and that that should help with some of the trouble he is having. They were also told that he is probably a week or two out from being called to get a liver. That was enough positive encouragement for my mom. She quickly started taking up the many wonderful people out there on their offers of help and she bought a plane ticket to fly out today! She won't get here until this evening, but I'm really excited she's coming.

Also, my in-laws are coming to town as well (they live about a 13 hour car drive away (and in the opposite direction as my family)). Tim told me that they were debating between driving up all day Wednesday or splitting the trip into two days and doing part Wednesday and part Thursday. I was really nervous that things would go super well with the prepping and induction and that Emma would be born and pass away before they even got here. I was glad to hear later that they had decided to do the drive all on Wednesday and to get here that evening. Then last night, Tim called them to tell them that my mom was coming after all and they informed him that they were doing part of the drive today (Tuesday) and the other part tomorrow (Wednesday). Meaning they'll get here before I even have to go in to the hospital.

Finally, my sister Erika is flying in on Wednesday late afternoon. The weather is expected to be clear for the next ten days, so no one should have problems due to weather.

I'm so grateful that everyone is coming and that things are working out. I told Tim a couple of weeks ago that one thing I worried about happening to me was not relaxing and enjoying the time with Emma because my anxiety might get in the way of everything being perfect and going the way we want it to and for making sure everyone is pleased. I've been working really hard to do as much prep in advance and then to rid myself of responsibilities once Emma comes so that I really can feel peace and comfort.

I should also add that I have a brother and a sister that live nearby and that Tim also has a brother and sister that live nearby. We're glad that they've been here for us and that they don't have to travel to see Emma!

We've Been Scheduled

2009-01-12T11:25:00.000-08:00

I had my last doctor's appointment today before I'm induced. There's good news and not so good news. The good news is that he doesn't think I need a full 24 hours to prep, he thinks 12 hours will suffice. So I don't have to go in until Wednesday evening! The perinatologist told me that I would need 24 hours, so I had been thinking I would need to go in on Wednesday morning, but my OB thinks I'll be fine with going in later. I'm especially grateful because that means that Tim can be there with me! He said he'll decide what they're going to do once I get to the hospital and he checks me. He might do one of three things, only one of which will allow me to go back home before being induced on Thursday. So we'll see what happens.

The not so good news is that my uterus is measuring smaller than it was 2 weeks ago. I didn't even know that was possible. Had we not already been planning on later this week, my OB would have tried to strongly persuade us to induce immediately. I'm 35 weeks and my uterus measured at 26 1/2 cm. Last time I was at 28 cm. As he was measuring, he kept asking me about Emma's movements and I told him that she's definitely still in there and active and as soon as he listened to her heartbeat he was more assured that she's still just hanging out.

I have to add in another note about my doctor. It really lifted my spirits when he was explaining things and he said "we're going to treat this delivery just like any other delivery with a viable baby. The only differences are we won't do an emergency c-section and we'll wait as long as we can to break your water. This baby is just as viable as any other baby." I am so appreciative for my doctor and that he wants to do everything in his power to deliver a live baby. Thank you Dr. G for everything you've done for Emma and I and I pray that angels will attend you as you seek to deliver this baby.

Emma's Prayer Shower

2009-01-10T19:31:00.000-08:00

Today was the luncheon for Emma's prayer shower. It was fun to be out with such great people and to feel loved by so many! I'm very grateful to everyone who came and for the gifts I got. They gave me a shadow box to put memories of Emma in, and then a basket full of stuff for Tim and I to use for date nights with plenty of offers for babysitting! I am so grateful to be surrounded by so many wonderful people. The more I think about Emma and the timing of everything, the more I know that Heavenly Father is watching out for me. While this has been one of the hardest trials in my life, it's also been one of the times where I've been most supported and uplifted by friends and family around me. You guys are great! Thanks for everything.

A picture of me with the two great girls that organized it all, Jenn and Trine:

A picture of me with my sister Kristen and my sister-in-law Lecia (these two are pregnant with my first nieces on each side!):

Letter to Emma

2009-01-09T11:44:00.000-08:00

I started to write a letter to Emma, but I couldn't finish it. It makes my heart ache too much. I am ready and excited to hold her in my arms, yet because I know what her coming out of me means, I am scared and nervous.

I love you Emma.

Look Who's Getting Big!

2009-01-05T20:03:00.000-08:00

I'm not going to pretend that I enjoy being pregnant, because for the most part I don't. I enjoy the results of being pregnant - so it's definitely worth it. Things have been a little different with Emma though. I find myself taking more joy in the not so enjoyable things. For example, this past week, Emma gave me my first stretch mark from her! Normally, I would complain. But for Emma, that means that she is growing!!!! Way to go little girl! Here is a picture of Emma and I at 34 weeks (we're looking bigger!).

Prayer Shower

2009-01-04T18:41:00.000-08:00

Emma and I get to have a shower still! Some dear and sweet friends of mine said that they wanted to still do something for me to celebrate Emma. So they're going to throw Emma and I a prayer shower.

What is a prayer shower? Whatever you want it to be! We're getting together for lunch and spending good time with each other.

I'm excited and very grateful!

Birthing Plan

2008-12-31T12:21:00.000-08:00

We created a birthing plan for Emma's delivery. I didn't do that with my other deliveries because there wasn't a need to. But with the possibility of time being short, I want everything to be done the way Tim and I want it to be done. I had a friend specifically ask me to see the birthing plan, so I'm posting it on here for that reason. Also, if you see anything that doesn't make sense or if you can think of something that maybe got left off, feel free to let us know. Thanks!

Birthing Plan

Dear Staff of ____________ (I left it blank on here because this is a public blog),

Our unborn baby Emma, has been diagnosed by our medical providers with a condition known as anencephaly. With this diagnosis come many concerns for us as parents. We know that even though her body is not expected to be perfect, she is still our precious child and we love her. We desire your patience and understanding to help us make the time we have with our baby as comfortable and sweet as possible.
In order to aid you in your care for our family, we have designed the following Birthing Plan to help you understand what our desires are for this experience. We appreciate your kindness and exactness in following this plan.

1. Please call our baby by her name: Emma
2. We understand that in most situations, we can choose to have the fetal heart-tones monitored or un-monitored. We prefer to have them monitored.
3. In the event of an emergency, we would prefer to continue with a normal vaginal delivery if possible.
4. We feel strongly against breaking the water artificially. Please discuss our options with us.
5. We would like to have family members free to enter and leave the labor room while Tiffany is in labor. However, we only want Emma’s mother and father in the room for her actual birth.
6. We will ask a member of our family to record parts of this experience on video, etc. for our family records.
7. We would not like Tim, Emma’s father to cut the umbilical cord. The doctor or a nurse may do this.
8. We are participating in a Duke University study. If Emma is born alive, her cord blood is to go to Duke University. We have a cord blood collection kit for this. If Emma is not born alive, we will want someone to get a skin graft from her. Please contact Heidi Cope to receive instructions (several of the family members have a phone numbers list and Heidi’s phone number is on there).
9. For the Duke University study, we would like a nurse to take a few pictures of the opening in Emma’s head right after delivery. We will provide a camera for this.
10. We would like to have all vital signs, weighing, labs, or medications withheld until after we have held our baby.
11. As far as holding of the baby, we would like Emma to be immediately placed on her mother’s belly and then wiped off gently, suctioned, wrapped in a warm blanket, and head covered with a hat.
12. We would like Emma to be first held by her mother, Tiffany.
13. We would prefer that if our baby is not breathing well at birth, we be given options of medical interventions at this time to further discuss.
14. We would prefer that no eye goop be put on Emma’s eyes.
15. For the bath, we would like to be offered the opportunity to bathe Emma ourselves in a warm basin in the labor room.
16. We request that a special ceremony be performed in accordance with our religious beliefs. Accordingly, this blessing will require the attendance of the male members of our family and possibly our bishop.
17. We would like to have prints and molds of our baby’s hands and feet be done.
18. We plan on taking many photos and we will be having a photographer from the foundation Now I Lay Me Down to Sleep come to take additional photos.
19. If our baby lives, we would not like to try to nurse our baby in the Labor Room. We would, however, like to try to give her a bottle. If this is not possible, we would like our options discussed with us.
20. Please help us gather as many keepsakes as possible (bassinet cards, hats, blankets, ID bracelets, etc.) to take home with us.
21. After delivery, we would like to spend as much time as possible in the Labor and Delivery Room with our baby. However, if it is needed and as long as we can continue to hold our baby, we are fine with being moved to a room on the Maternity Floor.
22. Please put a sign on our door that lets others know of our loss/impending loss.
23. Upon discharge, please give us information about milk suppression and physical comfort measures.

I Just Wish I Knew

2008-12-30T13:12:00.000-08:00

I know I posted about this before, but I'm not really sure if it made sense. I also still struggle a little with it.

Mostly, I wish I knew what Heavenly Father's will for Emma and our family is. I don't want to pray with all my heart for her to be born alive if that's not His will. I just feel like the more I pray for it, the more I want it! But then if that doesn't happen, I don't want to be disappointed (that's not the correct word to describe it, but I can't think of a better one right now). I want to feel peace and comfort about the entire situation surrounding Emma's birth.

I'm sure this is still not making much sense.

As we approach Emma's birth date (still planning on January 15th), I have mixed feelings of excitement and nervousness. Fortunately, as we get closer and closer, I continue to have more trust and faith in my doctor. You can read the story of Zion-Grace. That's my same doctor. The fact that Zion-Grace was born alive and that the mother came out of that labor not just safe and okay, but the same physically as any other labor (she was hemorrhaging) is a miracle in my mind. I've been in touch a few times with that family and they too think that it was a major blessing in their lives to have been led to that doctor. (I did a post a while ago about how when I got pregnant this time I decided to go with a different doctor than with my other pregnancies, but at the time I couldn't explain why because I had liked my doctor and I was still in the same city with the same insurance - I now know why).

This is a really random mixture of things. Sorry about that.

I had a doctor's appointment yesterday. Everything is about the same. Emma grew, but not a ton. Her heartbeat is still going strong. Tim and I had a few more questions that I thought the doctor gave good answers to. We only have one more appointment left before I'm going to be induced. Time really is flying.

Merry Christmas Emma

2008-12-25T21:18:00.000-08:00

Movements

2008-12-21T18:09:00.000-08:00

Emma moves a lot more now. I would say that she's now moving the same as any other baby might. Last night I thought she was having a dance party!

I enjoy when I have quiet moments to feel her movements. I find that I'm really able to appreciate them. I mean, here is a child, who has severe abnormalities, yet she's still moving. It's amazing to me!

Point of this post? I mostly wanted to document the fact that Emma is moving regularly now (after so long of hardly moving) and to document how much I love to feel her move.

Hesitant

2008-12-19T12:08:00.000-08:00

Ever since I got over the initial shock of Emma's diagnosis, I have put my full faith and trust in Heavenly Father and His plan for us. Yes, I haven't been perfect all the time, but I really do believe that this is His plan for our family and that everything is in His hands.

Because of this, I've been hesitant to fully ask for what I want. When I say my prayers, whenever I ask a blessing to be upon Emma, I always quickly follow it up with something similar to "if it be Thy will." I know that it's the right thing that I'm doing by wanting Heavenly Father's will to be done. However, I feel like it retracts from my own honest desires.

Okay, this is probably not making any sense. So don't mind my ramblings and if nothing turns out to make sense.

I expressed my thoughts to Tim and he told me that he thinks it's more than okay to leave out the phrase "if it be Thy will." He says if that's what I truly desire, Heavenly Father knows that and that I've admitted it enough verbally already. But I was still hesitant to pray for what I truly desired without adding in any clauses at the end.

Tuesday afternoon (after our ultrasound) I was reading the Book of Mormon and kind of just pondering the entire situation. I only got in a few verses before one of my children woke up, but what I read hit me.

Moroni 7
26 ...Whatsoever thing ye shall ask the Father in my name, which is good, in faith believing that ye shall receive, behold it shall be done unto you.

27 Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven...?

29 ...have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.

33 And Christ hath said: If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me.

Emma already is our miracle. If you combine the in utero death rates of babies with anencephaly, babies with trisomy 13 or 18, babies with encephalocele, and babies with heart defects, Emma has a slim chance to be alive. Yet she is! She's our fighter, our survivor. And for that I am so grateful.

But I'm going to ask for one more miracle from Heavenly Father. With Heavenly Father knowing the intents of my heart, I'm going to ask for the miracle that she be born alive.

Because that truly would be a miracle.

Another Ultrasound

2008-12-16T11:04:00.000-08:00

We had another ultrasound at the hospital today and got to speak with the perinatologist again. I am really glad we went. It was very informative and while not everything is looking up, I found it quite comforting. I definitely think that was a blessing from the Lord. The perinatologist was great and I'm so grateful we got to meet with her again.

We learned a lot. Some stuff we already knew and some stuff we didn't already know. I'm hoping to record the majority of what we saw on here, but because there's so much it may not make complete sense and I may miss some of it.

Emma is definitely restricted in her growth, but not as bad as we thought. The measurement of her femur puts her around 28 weeks (making her only 3 weeks behind). The measurement of her abdomen puts her around 27 1/2 weeks. There is no way to get an accurate measurement of her head, so those were the only two measurements. The perinatologist thinks that Emma has a chromosomal abnormality (likely either Trisomy 13 or Trisomy 18) and so the placenta is probably being affected by that abnormality and that's why it's not providing the full amount of nourishment to Emma. My amniotic fluid levels are right where they are supposed to be (I guess normal is anywhere from 5 to 25 and mine measured at 16). We asked her why I would only be measuring 26 cm (meaning 26 weeks) when Emma is bigger than that and there's not a lack of fluid. The perinatologist said that the uterus measurements are accurate within two weeks either way. So my uterus measurement of 26 cm is right on with Emma measuring 27 1/2 to 28 weeks.

Emma is approximately 2 lbs. and 9 ounces right now. We asked the doctor what that might make her at birth (in about a month) and she said that with Emma's growth restriction she will probably be right around 3 lbs. (which is what I had guessed soon after the diagnosis). The perinatologist agrees completely with my OB (although she didn't say she agreed, she would just tell us her professional opinion and it happened to be the same as my OB's). Emma is at a much greater risk of a stillbirth, so she really does not recommend going all the way to 40 weeks or past. However, she said that we do want to give Emma more time to grow if she'll allow it. She thought that around January 15th was a perfect time. She did say, however, that if there start to be any variations in Emma's heartbeat, we should induce immediately.

As to the other problems Emma has, they all are about the same. There is still water in her kidneys, but it hasn't caused any other problems or damage. There is still a hole in her heart, but her heart's still beating strong (they measured it at 140). And obviously there's still only the two parts in the umbilical cord instead of the three (although it would have been cool if the missing one would have grown back - although I think that's unheard of). The perinatologist did find one more thing that's been overlook in our other ultrasounds (although almost everything but the anencephaly was overlooked in our first ultrasound). Emma also has encephalocele. It's another neural tube defect, but not a fatal one. Wikipedia says encephalocele is "characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull." It's on the back of her neck and it basically means that she has a lump there. I haven't looked at any pictures of it yet, so I don't know how else to describe it. Also, they noticed that Emma's hands were in awkward positions. So there could be a malformation there, but they weren't in a good enough position to really look at them.

Back to the Trisomy 13 or 18. We can do the testing for it if we want, but it doesn't make a difference whether or not this is the case. Also, I think that they do the testing through the Duke University study anyways and they said that they would let us know the results if anything came up. So that works for us. The perinatologist said that if this is the case, it's almost better for us because it means it wasn't a folic acid deficiency. It really was just a random and fluke thing (although I almost hate to label it that way because I think this was Heavenly Father's plan for us). It makes the recurrence a little less than if it was a genetic thing or a folic acid deficiency.

The news in prepping for Emma's birth is not that good. Right now, Emma is in the worst position possible for a vaginal delivery (which you might find surprising that she's not breached). Emma is feet first. This is not encouraging because there's several possibilities of things that could go wrong with her being feet first. It's very likely that her feet would come out, but then her butt (a much wider part) would get stuck. While her butt is stuck, it's possible that her umbilical cord could slip out and then get kind of smashed in the cervix area with her butt. This would cut off Emma's lifeline and probably result in death. Also, there's the possibility of Emma getting all the way up to her shoulders through, and then the cervix closing in around her neck before it gets her head out. I think that's pretty obvious how it could cause some problems. The perinatologist said that most babies turn head down because of the weight of their heads being so great. Because Emma does not have that, she very well might not turn head-down. If she were to become breached, it wouldn't be bad at all. It would get the biggest part through first (the butt) and then with how small her head is, the combination of her head and feet together would be a perfect size to slide right out. The perinatologist also made us aware that because of all of Emma's problems combined, she would put the chances of stillbirth at 50 to 60%. Not comforting at all, but I'm so grateful she was honest with us.

A lot of people have asked us about c-sections. Tim and I are leaning towards a vaginal delivery through the whole thing (meaning if it becomes an emergency, still sticking with the vaginal delivery). I can give you a few not very meaningful reasons why if you want. First of all, that's what our doctor suggests and that's what the perinatologists suggests. Both of them have said that they will do what we want, but that's their recommendations. Also, Tim and I still would love to have lots more children after Emma. C-sections have the potential to limit the amount of children that I could bear. Additionally, I want to be as physically and mentally aware and able as I can be after Emma is born, in case she is only with us for a few short moments. So while none of those are deal breakers, they are a few of the reasons we are leaning towards a vaginal delivery. Also, at this point, we just feel right about it. We very well could change our minds as things get closer, but for now that is the plan.

So after this very long post, did I leave anything out? I'm sure I did and I'm sure not all of it makes sense. I'll come back and correct things later if I notice something.

We continue to be amazed at the outpouring of love for us and Emma. Thanks to all of you for praying alongside us in this journey.

One Month Away

2008-12-15T09:54:00.000-08:00

Today is December 15th. Like my other pregnancies, I feel like time is moving too quickly. One month from today we hope to meet Emma and hold her in our arms. We pray that Heavenly Father will allow us to spend at least a few moments with her alive. Oh how I pray for that!

I had another doctor's appointment today and things are looking more up from last time. Emma is still five weeks behind, but she's not any further behind! That is very good news. Also, her heartbeat is still going strong. I think because she did grow, my doctor had very different words of advice this time. He strongly encourages us to aim for at least the 34 week mark to let Emma's lungs develop enough. January 15th puts me at 35 weeks and 2 days - so we're still planning on it.

We did schedule another ultrasound to check more specifically on Emma and how she's doing. I personally want to know how big she is right now, how far behind she actually is, if she's still head down, how much amniotic fluid there is, how the placenta's doing, whether her heart or her kidneys have gotten any better or any worse, whether or not we can see how much of a brain stem she has, and I also would just like to see her again.

I'm glad classes are over for Tim for the semester because he was able to go with me today to talk to the doctor and he'll be able to go to the ultrasound at the hospital with me.

Good Luck Tomorrow

2008-12-11T19:26:00.000-08:00

Tomorrow, a friend that I've made through an anencephaly support group, is scheduled for a c-section for Lily, her anencephalic baby. Last I heard from her (a few days ago) she's pretty terrified. But she has great faith and I pray that everything will go well for her.

I've made quite a few friends with anencephalic babies who are all due in the next coming months (December through mid February). I have mixed emotions of nervousness and excitement as I wait for their stories and anticipate what's going to happen with us and little Emma.

So if you think about it tomorrow, say a little prayer for Jessica and her baby Lily. You can check out her blog here: Consider the Lilies.

Birth Announcements

2008-12-08T15:58:00.000-08:00

I plan on sending out birth/death announcements for Emma. I think I'll still do it even if she's stillborn. However, since I've never sent out birth announcements for my other children or sent out Christmas cards, I don't have a good list of people's addresses.

So if you want Emma's birth announcement, please e-mail me your address so I can send you one! Please e-mail it to tiffany.bishop [at] gmail.com. Also, if you could put something like "address" or "Emma's birth announcement" in the title, that would be greatly appreciated.

Thank you!

Paranoid

2008-12-06T08:25:00.000-08:00

While I'm grateful that all of the doctors we've worked with have been very open and honest with us about Emma and her condition, I sometimes find that I make myself paranoid about everything.

Most recently, as we found out about Emma doing worse than expected, her movements have greatly decreased. Now she wasn't a champion mover beforehand, but she was starting to move more and more. However, on Wednesday and Thursday of this week I had to stop more than once and wait for a while to see if I could feel any movement. And even then it would only be a slight movement. I told Tim that I didn't know if I was just more paranoid and making it seem like she was moving less or if that really was the case. Whether or not it was true, it sure did frighten me as I would coax Emma to move and nothing would happen for quite a while. Fortunately, she did move a more normal amount on Friday. So my fears are a bit more subsided and I feel okay to write about it now.

We Are Loved

2008-12-04T13:11:00.000-08:00

I wish I could adequately express how wonderful everyone is to us. We have received many prayers, hugs, gifts, and love from so many people. I am so grateful for all of it.

At times I almost feel bad and think that we should be trying to help others. But then at other times, I think of how loved it makes me feel and I don't feel bad at all. I think Heavenly Father is very aware of our family and what we need and he's blessing us through the lives of others. Thank you to all of you who are there for us.

I'm afraid to make a list of the tangible things that have been done for us or given to us, for fear that I would leave something out, but I want to so that after time has passed, I can look back and remember many of the wonderful blessings.

meals
flowers
free babysitting
children's book
kind notes, emails, phone calls, letters, and visits
Christus statue
blankets for Emma
a candle
The Living Christ with a special background -already framed and matted
a free photography session
preemie clothing for Emma
a burial dress with booties for Emma
personalized scrapbook for Emma - ready to just have the pictures or words put in
information on memorial ideas and coping with grief
Christmas ornaments

I hope I listed the majority of it. I apologize if you've done something for us that I didn't list on here. Feel free to remind me because I do want a comprehensive list. I'll add on things as I either remember or as more things are done.

This love for Emma and our family is an amazing blessing in all of our lives. Thank you so much.

Trying to Help

2008-12-03T12:30:00.000-08:00

Since anencephaly is classified as uniformly fatal, we'd like to be able to help others out in any way that we can. The first thing we thought of was studies that we could participate in or donate Emma's body to. The second thing we thought of was donating parts of Emma's body to other babies who had a chance of survival.

There really aren't a lot of studies being done concerning anencephaly. However, we did find one that Duke University is doing. They've been at it for a long time and probably will continue for a while. They are hoping to find genetic and/or environmental factors causing anencephaly. There are speculations about certain causes, but nothing is really certain. For this study, there was quite a bit of paperwork that Tim and I had to sign, I did a 45-minute telephone interview with them about the medical family histories of Tim and I and our families, then they want blood samples from both Tim and I. From Emma, they want her cord blood and pictures of the opening on her head immediately after birth. It's really quite simple and I'm glad that we can participate.

As for donating Emma's organs or tissues, that was a complicated issue. Apparently there are a lot of debates about anencephalic babies being donors and the issue has gone back and forth over the years. I finally found a website for donors in Pennsylvania (I promise that this is going somewhere). That website had a links section and in that links section was a website for donors in Utah and Idaho, Intermountain Donors. But even after I found that website, I still struggled to get answers. However, I did find contact information. So I started to email people. But my emails went unanswered. Finally Scott came to the rescue! Apparently he was the right person to contact (although in my other emails I asked if they could refer me to the correct person). He emailed me back and told me a number to call and to ask for him.

I called Scott on Monday. He said that Emma's heart valves are the only thing that she would be able to donate. One of the debates right now is the definition of brain dead and I guess you can't be brain dead until you are at least 7 days old. Apparently the heart valves are the only thing that you can donate without being declared brain dead. (And if we waited for 7 days, Emma's organs wouldn't be in good enough condition anymore to give to someone else). So I was thinking that Emma's heart valves were all that she could donate and that that wouldn't work because she has a hole in her heart. I told Scott that and he said that that didn't matter. As long as she hadn't had open heart surgery, her valves would be good to donate.

But there's still one more catch. Emma needs to weigh at least 5 lbs. to donate her heart valves. Scott said that they're willing to go a few ounces under 5 lbs. for anencephalic babies because of the fact that since they don't have a full head, they're missing all of that weight - meaning a 4 lb. 13 oz. anencephalic baby could very well be the same size as a 5 lb. baby. But even then, I feel like 4 lbs. 13 oz. is a lofty goal. One that I would love to achieve, but I don't know if it's in store for little Emma.

So while I'd love for Emma's heart valves to go to some other sweet little baby, I'm not getting my hopes up for it. And I'm feeling satisfied that at least we can participate in the Duke University study.

No News Is Good News

2008-12-01T11:13:00.000-08:00

Unfortunately, that's not the case right now. I had another doctor's appointment today. I guess I should brag that I didn't cry at all! I choked up a little, but I was really proud of myself. But our little Emma is really struggling to grow. Going off of my uterus measurements, she is now 5 weeks behind what she should be. At 20 weeks, she was 8 days behind. At 25 weeks she was 3 weeks behind. Now at 29 weeks she is 5 weeks behind. Yes it is normal for anencephalic babies to be smaller, but not 5 weeks behind smaller.

Last night Tim and I had talked about the possibility of not inducing at 35 weeks, but waiting until 40 or even 42 weeks to give Emma more of a chance to grow. Even before I went to the doctor's today, I knew I was small. My secret hope was that I wouldn't be any more than 3 weeks behind, but it didn't surprise me when he measured me 5 weeks behind. So I immediately brought up to him the possibility of waiting longer. He told me that whatever Tim and I wanted to do was fine with him, but he didn't think that would be the best decision. He then was hesitant and told me that he didn't want to scare me, but since we were already talking about it, he should probably tell me.

He then told me that he thinks that the baby is not being nourished enough from the placenta. While Emma's heartbeat is still going strong, he thinks that she's in a stressful environment. Because of her lack of growth, he thinks her chances of dying inside of me are much greater. He suggested the possibility of even going earlier than 35 weeks. But then he once again told me that it's whatever my husband and I want to do.

So I'll go back in another two weeks. If my uterus is still 5 weeks or even further behind than that, we'll do an ultrasound to confirm that she really is that far behind. And then we'll go from there.

Thank you for your love and support. Continue to pray for Emma and most especially that, if it be the Lord's will, she can hang on for longer and that she can continue to grow.

Time Keeps Moving

2008-11-30T15:09:00.000-08:00

We're now about a month and a half away from when they'll try to induce me. With my other pregnancies, I've felt like the first eight months go by pretty quickly, but the last month seems to drag on forever! Since I'm inducing a month early with this pregnancy, I wonder if that'll still be the case. I feel like it won't be since most of the time I am just so big I want to be done with the pregnancy. In this case, I don't think I'll be too huge when that time comes and I don't know if I'll have similar feelings of wanting to be done with the pregnancy.

In one of the Yahoo groups that I'm in, two ladies gave birth recently to babies with anencephaly. The first lady was from Ireland. She went in at 36 weeks to be induced and it didn't work, same thing at 37, 38, 39, and 40 weeks! At 41 weeks, her daughter had her birthday, so she decided to skip that week, and then at 42 weeks, after another failed inducement (does anyone know if that's the right word?) she had a c-section done and her little boy Eoin (pronounced Owen) was born! He lived for 12 hours before he died. I guess he struggled with breathing at first, but then he got the hang of it and didn't struggle again until the last hour of his life. I cried when I read her story. I, along with many others in the group, had been following her journey for the last month as she would go in every week and then be back a day or two later saying that it didn't work again. She's the biggest reason why I asked my doctor about what we will do if the inducement doesn't work for me. But he assured me that it would and that that's never happened to him. I was talking to a lady from Switzerland and she said that they probably have different ways of doing things in Ireland and she thinks that they don't use as many different methods as they do in the U.S. to get labor started. I also know from the lady who had Eoin that they (the doctors) wouldn't give her a c-section until she was 42 weeks along. But I'm so happy for her and the time that she got to spend with her little boy.

The other lady is from Indonesia. She didn't find out until she was 30 weeks along that her baby had anencephaly. Her husband wasn't very supportive to begin with and her doctor would not continue to see her unless she was going to induce labor right then and there. She did not want to do that, so she had to find someone who would take her. I guess she had trouble finding anyone at first, but finally she found a midwife from Australia who was in Indonesia doing an internship or something similar. She agreed to see her, but they had to do a home birth because the hospitals wouldn't take her. I'm not sure of all of the details, but the whole situation just makes me a lot more grateful of how understanding everyone here is. I feel like no matter what it's about, everyone just tells us that as long as it is medically sound, they will support us in what we decide. So the lady from Indonesia really needed to get labor started herself. At around 39 weeks they started doing every single home remedy you can think of to start labor. She was even taking castor oil on a regular basis. But nothing was working. Finally, at 42 weeks, they gave her some cytotech to begin labor and it worked. A day and a half later Carmen (a boy) was born. As for the name, I think of it as a girl's name, which is what they thought they were having. But they weren't too positive because when the doctor saw what was wrong, he ended the ultrasound right then and told her that she needed to induce labor immediately. When she said she didn't want to, he said that he wouldn't see her anymore. She asked him what the gender was and he told her it was a girl. So either he didn't really look and he just told her something or he only looked briefly and saw it incorrectly. So she gave birth to Carmen and hasn't posted anything since he was born (which was last Wednesday).

I feel great joy in reading these mothers' stories. I'm so grateful for the time that they got to spend with their little ones and I continue to pray that that might be the same for us. However, I feel like I'm also preparing myself well to accept whatever the Lord's will be. There is still the chance that Emma could die inside of me and there's always the chance that she will die during labor. While I hope that these do not happen, I know that Heavenly Father will help me have the peace and comfort I need no matter what happens.

Once again, I can't end a post without saying how truly grateful I am for the love, support, and prayers that come from so many people. Thank you!

Prepping Peter

2008-11-20T07:19:00.000-08:00

Before we received the diagnosis for Emma, we talked with Peter all the time about the new baby. He was very aware that there was a baby in my tummy and that it was growing bigger and when it got big enough it would come out so we could hold it. We had fun having him tell us all the time that he thought it was a sister. We didn't think twice about these things.

The day we left for the initial ultrasound appointment, Peter knew where we were going and he knew that when we got back we could tell him whether or not it was a sister. He was a bit taken aback when he saw me come home in tears and sobbing. But he timidly asked, "is it a sister?" I told him yes, but that she wasn't going to live. There was no more to that conversation.

While Tim and I talk about Emma a lot, the only time she really gets mentioned around the boys is when we're praying and she's included in the prayers. I know that Benjamin is still too little to understand, but I'm curious as to what's going on in Peter's mind.

When we've talked with Angel Watch, they've told us about the importance of being straight forward and using correct terms. They warned us about using phrases such as "she's sick" because then Peter might associate being sick (which happens to everyone) with death. However, I also don't want to push the whole situation on Peter too much. So we've approached it a few different times.

One time was in the car. We live near a store that does Mormon statues and they have a statue of Joseph and Hyrum Smith on display outside their store. We drove by one day and Peter called out, "Joseph Smith!" I complimented him on his correct identification and then he said, "he's dead." I told him that yes indeed, Joseph Smith was dead. Since we were already on the topic, I decided to ask Peter about Emma.

Me: Peter, did you know that Emma's going to die too?
Peter: No, I didn't.
Me: Well, she is. She's going to keep growing inside of Mommy, but when she's big enough to come out and does come out, she's not going to live very long. And then she's going to die.
[silence]
Peter: I not like that.

His last words broke my heart. I couldn't continue the conversation from there. That was a few weeks ago.

When Angel Watch came this last time, they left us with a children's book called Lifetimes. Just this morning I read it to Peter for the first time. I don't think the book did much to clear up Peter's understanding or anything like that, but it did get us talking about dying afterwards. So again I brought up Emma.

Me: Did you know that baby Emma is going to die?
Peter: No.
Me: She is. Do you see how you have a nice big head? And Benjamin too? (Then Benjamin pointed out that I had a head too). And I have a nice big head too?
Peter: Yes.
Me: Well, baby Emma didn't get a nice big head. Her head's going to be too small to let her live once she's born. So she's going to keep growing inside of mommy, and then when she's born, she'll only live for a little bit and then she'll die.
Peter: And us too?
Me: No, we'll keep on living. But we'll get to see Emma before she dies and take pictures with her.
Peter: And put them up there (points to the wall behind us)?
Me: Yes, we'll put them up there.
Peter: Okay.

I don't think Peter quite grasps the whole idea of what's going on, but I also don't think it's a traumatizing concept to him, and I think that's what's most important. So I think if it's brought up again, yes, we'll talk to him about it. But if it's not brought up, we just might wait until after Emma dies to see how Peter's doing.

Slowly Preparing

2008-11-19T12:04:00.000-08:00

There have been so many little things that we've been doing/have gotten done that I think have helped us along in the slowly preparing for Emma. Here's a list of a few of them.

Met with a guy from a mortuary (I don't think he was a mortician, so I don't know what else to call him). We really want to have most things done before Emma comes, so that's why we met him kind of early. It was a good meeting though. He helped us understand a bit more about what all happens and what our different options are. They also don't charge us for any of their services. Basically we just have to pay for Emma's casket. We're definitely grateful for that. As far as planning for things, I keep going back on forth and whether to do a funeral service or a graveside service.
Received some preemie clothes. I'm a member of a Yahoo group called Freecycle. It's a local group where people post things that they are getting rid of and other people can email them and say they'd like to come get them from them. We've gotten quite a few cool things this way. A couple of weeks ago, someone posted about preemie girl clothes. I emailed her and said I'd be interested and she told me to come pick them up. Now we have a preemie sleeper and two preemie dresses. I wonder if they'll all be too big for Emma still, but I think some of them will work. Also, Heather (the bereavement specialist that we've met with through Angel Watch) said she always has a variety of preemie clothes with her, so when she comes to the hospital if what we have doesn't work, she'll find something else for Emma.
We're taking maternity photos on Saturday. I know it's still kind of early, and for those of you who have seen me, I'm definitely not huge (although I do think that I am definitely pregnant looking), but there is still the chance that Emma could pass away any day, so we'd like to get them taken sooner rather than later. We contacted Now I Lay Me Down to Sleep (aka NILMDTS), a non-profit photography organization that matches photographers with families who have received a poor pre-natal diagnosis. So she'll come and take maternity photos and then she'll also come to the hospital after Emma is born to take pictures then as well. Then she gives us a CD of the pictures for free. Funny thing, as I've been communicating with her and gave her my address recently (we're doing the maternity shots at our house), we realized that we lived right around the corner from each other. She lives literally a block away!
Trying to show Heavenly Father that we are willing to do whatever it takes for the blessing of this little girl. Heavenly Father keeps reminding me that I need to put my trust fully in him and then do all that I can do. It's hard, but I keep trying.
Looking at pictures of anencephalic babies. Most especially, I finally looked at a picture of the opening on the head. It wasn't as bad as I had thought, but I also saw the small thumbnail picture before I saw the big one, so I don't know if that made a difference. When Tim and I originally tried to plan out how we imagined Emma's birth going, we decided we wanted her gently wiped off, wrapped in a blanket, cap put on her head, and then handed to us. But I was talking to another mother who had a baby with anencephaly and she said her baby was born with a faltering heartbeat and struggling to breathe. They knew they didn't have much time so they had him handed directly to them. He ended up living for 11 minutes. This experience of this sweet mother has made us consider the option of having Emma handed to us right away and then having her wiped off, wrapped, covered, etc. while holding her. So in order to prepare, I've decided to start looking at the pictures of the head openings.

I'm sure there are more things, but that's what I've got for now. My heart continues to be grateful to all of you for your love and support. It is such a strength to us. Thank you!

Angel Watch's Second Visit

2008-11-13T15:04:00.000-08:00

We met again with people from the Angel Watch program. It was a nice visit and I really enjoy them coming. However, they may not come again before Emma is born because they said there's not really much that they think they can do for us (meaning they think we are doing really well handling everything and don't need a lot of their grief services/counseling).

When they were here we talked a lot about our birth plan. It was nice because we had a labor and delivery nurse from our hospital there and we also had the bereavement specialist from our hospital there. They both were able to answer a lot of questions about how things could play out and what not. What's even better, is that the nurse that we've been meeting with checked her schedule and she is on-call for the 15th of January. She said that she'd come in, whether they needed her or not and that she'd be our nurse. So not only do we know that we're getting a great nurse, but we've already discussed the majority of our birth plan with her and she knows exactly what we want and how we imagine things to go and she's in total agreement that we should get what we want, if possible, so she'll do everything she can to make it that way.

January 15th

2008-11-08T19:52:00.000-08:00

When I had my most recent doctor's appointment, we talked more about when I would be induced. We talked about January 15th. He said that he doesn't have his schedule for that far in advance and that the hospital probably doesn't have a schedule for then either yet, but he wrote it down in my chart and said we'll do it.

I've been praying a lot about that day and while I haven't had this overwhelming feeling that this is the day, I've just felt simple feelings that I should keep moving forward and all will be well. I've prayed about a few other days, and every time I get the same feeling - just keep moving forward and all will be well. So we're moving forward with January 15th.

But every now and then I think about how I can't possibly pick a date. Because, in reality, while I'm picking Emma's birthday, it's very likely that I'm also picking her death day. Yes, the statistics in the report I posted do show that some anencephalic babies live for more than a day, but I'm not counting on that being the case with Emma because we know of other problems that her body has.

So at times I think that maybe she can just stay inside of me forever. That way she can't leave me.

But I know that that's not the answer. I guess mostly I am starting to get a little nervous and scared. Time is going by too fast. I'm scared for what it will really be like when I do lose my precious little girl.

I try not to think about it too much, because I don't want to shake myself too much. But then again, I try to think about it because we have been blessed by the Lord to know all of this in advance and we have the opportunity to prepare for it.

So yes, we're planning on the 15th of January. But sometimes I pretend like we're not. Because really, sometimes I just don't like to think about that day.

Big Baby

2008-11-03T12:39:00.000-08:00

While Emma's not a big baby, I sure am.

Was anyone else like me when they were younger and had to talk to a teacher about something less than ideal and would break down and cry...every time? For example, if I had done an assignment wrong and I went to talk to my teacher about it, I couldn't help but cry. I had left my homework at home...I would cry when telling the teacher. Another kid had pushed me...I would cry when telling the teacher.

Eventually I grew out of this stage (or so I thought).

Ever since we found out about Emma's diagnosis, I can not contain myself when I go in for check-ups with my doctor. Today I had tons of questions to talk with him about and as soon as I started to ask the first question, the tears came aflowing. It's not so much that it's embarrassing, but I can't get through everything I want to.

When I made the appointment for my next doctor's visit, I made sure it was at a time that Tim could go with me. That way if I start to lose it, he can still communicate with the doctor.

But...as far as my doctor's appointment today, things are looking good. My blood pressure and weight gain are right where they should be. Emma's heartbeat is still going strong and my uterus is measuring small. My uterus measuring small is a very good thing in this case, considering we already know that Emma is small. If my uterus was measuring normal or big, it would possibly mean that Emma does not have the swallowing reflex and too much amniotic fluid would be building up inside of me. While it's still a possibility that this could develop (and I'm not really sure how or why - maybe she just loses the reflex?), the later it develops the better. I'm at 24 weeks and 6 days and I was measuring 22 cm (a normal measurement would have been just shy of 25 cm).

While we didn't get everything discussed that I had hoped (thanks to my non-controllable blubbering), we were able to discuss the birth plan that Tim and I wrote up. He had some comments on a few of the items, so Tim and I will have more to discuss still. We meet with some people from Angel Watch again next week, and hopefully we'll be able to discuss with them (since one of them is a labor and delivery nurse from our hospital) more about our birth plan.

Hindsight

2008-11-01T17:48:00.000-07:00

I've been on the same insurance for all three of my pregnancies. For my first two pregnancies, I went to the same doctor's office (it was a practice of five doctors that rotated). When I found out I was pregnant this time around, I thought I'd take a look again at the list of doctors that I could go to. It wasn't that I had a problem with my first doctor's office, I just thought I'd try something different.

I got a recommendation from a friend and I called that doctor. She wasn't taking any new patients at that time, but they told me that another doctor in their office was. I called my friend back and asked if she knew anything about this other doctor and she said that she had never had him, but she knew people who did who really liked him. So I went with that doctor.

Looking back, I wonder how much was me really just thinking, hmmm, I'll try something new, and how much was inspiration from Heavenly Father.

First, my doctor is of the same faith as me. Second, it's much more individualized care having one doctor versus five rotating doctors. And additionally, the more I learn, the more I'm finding out from others how great my doctor is. I may have already said this, but he used to work at a very high-risk hospital and he handles a lot of the high-risk pregnancies in the area and he's one of the best in the area.

I'm so grateful for guidance from Heavenly Father that doesn't always make itself obvious at first.

Report about the birth and life of babies with anencephaly

2008-10-29T12:35:00.000-07:00

It really is difficult to find a lot of statistics on anencephaly. The following is the most reliable report I've been able to find.

Report about the birth and life of babies with anencephaly

by Monika Jaquier

When parents get the diagnosis of anencephaly for their unborn baby, they often get only a minimum of information about what is in store for them. Doctors generally cannot tell them much about how long the baby could be expected to live, as most physicians have seen only very few cases in their practice. There exists almost no published information regarding the spontaneous outcome of a pregnancy with a baby affected by anencephaly.

But parents have questions. They need to know as much as possible about their baby’s condition.

Is there a risk that the baby will die during the pregnancy, in his mother’s womb?
What are the chances that the baby will survive birth?
How long do babies with anencephaly survive after birth?
Are there any factors that can give the baby a better chance for surviving the birth?

To answer those questions and to help families preparing for their baby’s birth, questionnaires were sent to families who opted not to terminate the pregnancy. These families met through the website http://www.anencephalie-info.org .

Data regarding 303 babies was collected. All babies were diagnosed with anencephaly and were carried to term or until spontaneous premature birth.

The information gathered is surprising. The results may impart courage to affected families and allow obstetricians to offer better advice after the diagnosis. There is no doubt that anencephaly is always fatal, but the chances to be able to hold your baby alive in your arms are good.

Findings:

The pregnancy:
Almost 40% of the babies were born prematurely (before 37 weeks of gestation) and 4% beyond term (after completing 42 weeks of gestation). Among those who were born at term, 2/3 of the mothers had the birth induced or had a planned c-section.

In 30% of the cases, too much amniotic fluid (polyhydramnios) did build up. This condition doubles the risk of a premature birth. Among those who had polyhydramnios, almost 60% of the babies were born before 37 weeks, against 30% among the unaffected pregnancies.

Other pregnancy complications were rarely recorded. Many mothers with previous pregnancies noted no subjective difference regarding general well-being between their pregnancies. Often fetal movements with the affected baby were more intensive than with a healthy baby.

The birth:
In almost all cases, a vaginal delivery was possible without problems. Contrary to the belief that delivery may be prolonged due to the lack of cranium and smaller head, mothers with previous pregnancies noted no subjective difference regarding the length and intensity of labor. Of those who chose a vaginal birth, 42% had a spontaneous delivery.

Several mothers asked for a planned Caesarean section (c-section) with the aim of avoiding stillbirth. Another indication was a pregnancy with multiples, where everything was done to reduce the risk for the healthy twin / triplets.

The baby's life up to and after birth:
Contrary to common belief, only a small number of affected babies died in utero.

Here are the statistics:

7% died in utero
18% died during birth
26% lived between 1 and 60 minutes
27% lived between 1 and 24 hours
17% lived between 1 and 5 days
5% lived 6 or more days

Thus, of babies conceived with anencephaly, 75% survived the birth. Nevertheless, there were significant differences in survival rates as related to different birth methods.

In case of a planned c-section, only 4% died during birth (all those babies had additional malformations which increase mortality). Not only did more babies survive the birth, but they also lived longer. Of affected babies born by c-section, 53% died within 24 hours, 30% lived up to 5 days, and 13% lived longer than 6 days.

In case of vaginal birth, the risk of stillbirth following artificial rupture of the membranes is twice as high as if no intervention is done. When the amniotic bag was ruptured by the obstetrician or midwife, 37% of the babies died during birth against 18% when water broke naturally.

Pregnant women should draw their obstetrician’s attention to this fact in order to increase the chance of a live-birth.

The length of pregnancy is decisive as well. There is no significant difference between the rate of live-births of babies born before 37 weeks of gestation or thereafter. But premature babies have a lower life expectancy, as only 7% live longer than 24 hours as opposed to 32% of the babies born after 37 weeks.

Further results:
There is a female preponderance between babies with anencephaly. The ratio of female to male was of 3 to 2.

For babies born at 40 weeks, the average weight is 2740grams (6.02 pounds).

Additional malformations were present in 9% of the babies. This may be an underestimate as it refers only to malformations seen at the ultrasound or after the baby’s birth such as Myelomeningocele, omphalocele, cleft lip, cleft palate, heart defects, malformed digits, and so on.

A positive family history for neural tube defects (i.e. anencephaly, spina bifida or myelomeningocele, closed spinal dysraphisms) was reported in 5% of the families.

Of the 9 mothers who had a homebirth, there were no complications and all the babies survived the birth.

The baby with anencephaly was one of a multiple pregnancy in 41 cases. Of these, 37 mothers were pregnant with twins and 4 with triplets.

Among all those families who opted for continuing the pregnancy rather than having an elective termination, not one family regretted their earlier decision to carry to term. Many wrote how important it has been for them to see and touch their baby, stillborn or live born, to give him or her a place in their family, and to conduct a burial.

I’m very grateful to the parents who have generously provided information; without their support, this report could not have been produced.

March 7, 2006

Correspondance to: Monika Jaquier
Le Vernay
1677 Prez-vers-Siviriez
Switzerland
webmaster@anencephalie-info.org

Read also: Jaquier M, Klein A, Boltshauser E., Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly, BJOG 2006; 113:951-953

Emma's Bucket List

2008-10-26T07:21:00.000-07:00

Since Emma most likely only has 3 months max left on this Earth (whether in utero or alive), I thought it'd be nice to make a bucket list for her - things she needs to try out. Most of these things will need to be via me since she's inside of me. I'm asking for your help in suggestions. Here are a few of the ideas/suggestions we've had thus far:

go sledding
taste chocolate (after she's born)
smell the different fragrances at a store like Bath and Body Works

I should also add that more than anything, I want to do this so that we're purposely creating memories with Emma while we have the chance.

So what would you add to Emma's bucket list?

We're Going on a Bear Hunt

2008-10-24T12:27:00.000-07:00

We're Going on a Bear Hunt

Michael Rosen Helen Oxenbury

We're going on a bear hunt.

We're going to catch a big one.

What a beautiful day!

We're not scared.

Uh-uh! Grass!

Long wavy grass.

We can't go over it.

We can't go under it.

Oh no!

We've got to go through it!

Swishy swashy!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A river!
A deep cold river.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Splash splosh!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! Mud!
Thick oozy mud.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Squelch squerch!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A forest!
A big dark forest.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Stumble trip!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A snowstorm!
A swirling whirling snowstorm.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Hoooo woooo!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A cave!
A narrow gloomy cave.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Tiptoe!

WHAT'S THAT?

One shiny wet nose!

Two big furry ears!

Two big goggly eyes!

IT'S A BEAR!!!!

Quick! Back through the cave! Tiptoe! Tiptoe! Tiptoe!

Back through the snowstorm! Hoooo woooo! Hoooo woooo!

Back through the forest! Stumble trip! Stumble trip! Stumble trip!

Back through the mud! Squelch squerch! Squelch squerch!

Back through the river! Splash splosh! Splash splosh! Splash splosh!

Back through the grass! Swishy swashy! Swishy swashy!

Get to our front door.

Open the door.

Up the stairs.

Oh no!

We forgot to shut the door.

Back downstairs.

Shut the door.

Back upstairs.

Into the bedroom.

Into bed.

Under the covers.

We're not going on a bear hunt again.

I don't think I would have given this book much thought if you handed it to me a couple of months ago. However, when a friend gives it to you after hearing of your poor prenatal diagnosis because she was given this when she too was given a poor prenatal diagnosis, and she gives it to you with the intent that it might comfort and uplift you a little, I gave it much more thought.

Life is hard. There are a lot of things along the way that we have to go through. And even after all of that, the outcome may not be what you expected or hoped for.

I pray with all of my heart that Emma will be born alive. Yet I don't know if she will be or not. However, I know that my Lord and Savior will be there for me whatever the outcome is.

The Scriptures

2008-10-22T11:17:00.000-07:00

A few days after we found out Emma's diagnosis, I got in touch with another LDS family that had had a baby about six months ago with the same diagnosis. I didn't really know what to say to them, but they were great in responding with love and support. They suggested a lot of things that were helpful to them. They also suggested a particular scripture. This scripture comes from the Book of Mormon.

Alma 7:11-12
And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.

I love how when I read these verses they have the power to speak truth to my soul. However, I found it interesting that I was actually more drawn to another verse in the same chapter. Verse 8 reads,

...for behold, the Spirit hath not said unto me that this should be the case. Now as to this thing I do not know; but this much I do know, that the Lord God hath power to do all things which are according to his word.

Tim and I both received blessings the day after we first found out about Emma. While I wasn't expecting it, I was really hoping that the Lord's will concerning the final outcome of everything would be revealed in one of our blessings. However, it wasn't. As I've continued to pray and study, it's been confirmed to me several times that I am not to know the will of the Lord right now. I am to keep on moving forward with faith and when the time is right, the Lord will reveal his will to us (which may not be until it has actually happened). While this is hard, both Tim and I are willing to put our trust and faith in the Lord. We know that we need to just take this journey one day at a time.

Emma's Movements

2008-10-20T08:26:00.000-07:00

I didn't feel Emma move for the first time until a few days before my first ultrasound (at 20 weeks). That was much later than when I felt my other children first move. And even then, I was lucky if I felt Emma more than once a day.

After finding out Emma's diagnosis, it made sense to us why she wasn't moving that much - she didn't have a brain. But as I've been reading online and talking to others, it seems that almost everyone says that their anencephalic babies have moved more intensely than their other babies. Already a little more paranoid than normal, this information did not help.

So last Friday I posted a message to that Yahoo support group that I joined asking if anyone else was in the same situation as me, where their babies did not move as much or as intensely as their other children. I was so grateful that people responded. Those that responded all said that it came later on than their other pregnancies. Most of them didn't start feeling anything until about 22 weeks, and the the intense feelings didn't come until at least 25 weeks along.

I read the responses on Saturday morning, and then surprisingly, I felt Emma the most I've ever felt her that day. I probably felt her at least 10 times, with several of them being consecutive. I'm 23 weeks along, so hopefully I'll continue to feel her more. And the reason I'm so paranoid about it? Because I want to be able to tell if she's died inside of me, but if she's only moving once a day, it's a lot harder to tell.

Empathy Etiquette

2008-10-18T17:11:00.000-07:00

I don't know if my words will all make sense or portray what I'm really wanting to say and express, but I'm going to give it a try.

After the initial grief and shock of Emma's diagnosis wore off, I began to try and think more logically about things. The question arose, why me? Fortunately, it wasn't an angry why me, it was more of "what am I supposed to learn from this" why me.

There were some obvious answers that came right away, and other answers came within a day or two. However, there was one answer that I did not see right away. I don't even know if Heavenly Father meant for me to learn this either, but it's something that is becoming very apparent. The best way I can put it is empathy etiquette.

I have had numerous people share with me their sweet stories of loss, sorrow, grief, and trials. These stories have helped me in so many ways. More than anything though, I have felt empathy towards and have felt empathy from all of these dear people. My biggest problem, however, has been showing and receiving that empathy.

I don't think there's one right way to show and receive empathy. But I've been practicing my empathy etiquette skills and I'm so grateful for that. While I still never know quite what to say or how to say it, I'm learning more and more about how to express my true love, appreciation, and empathy towards others.

Yet sometimes, I wish there was more I could do or say to let people know how truly grateful I am for them. I am so amazed at the love and support of those around us. I know this doesn't do it justice, but thank you to everyone. You are making this journey so much easier.

Angel Watch

2008-10-16T11:53:00.001-07:00

Angel Watch is different than the Angel Garden. Angel Watch is a program run in Utah by IHC that is a grievance support of sorts. We met with them earlier this week. We met with Carolyn, who seems to be in charge of the program, and then Heather, the grievance counselor for the hospital I'm going to deliver at, and Marilyn, a nurse at the hospital I'm going to deliver at.

At first I was a little hesitant that they would come and say, "what can we do for you?" and I'd say, "I don't know." And that would be that. But I liked it much more than I thought.

We first did introductions, with Tim's and my introductions being a little more in depth than theirs were. Then they asked us about any traumatic events in our lifetimes. At first I felt dumb saying this, but I told them that my dad almost died. After I explained to them about him being in and out of the hospital several times and getting phone calls a couple of different times telling my mom to rush to the hospital because he was dying, they understood a bit more what I meant and I didn't feel so dumb about it. But other than that, I really haven't had much.

After we talked about our past experiences, we talked about our greatest fears and our greatest hopes in regards to Emma's situation. If he wants to, I'll let Tim share his thoughts. But my greatest fear is not just that Emma will be stillborn, but more that she won't be recognized as much as part of our family if she is stillborn. I'm already so attached and so in love with her that I don't think I could handle people just passing her off as a stillborn. So on the flip side, my greatest hope is that she'll be born alive. (I should add in that Heather has the same doctor as me and she said that he is one of, if not the best in the area for high-risk pregnancies).

Our time with them was cut a little short because Tim had to get back to school, but it was good and we set up another time to meet with them. They also left us with some things, one of which is a guide to making our birth plan. I never made one with either one of my boys because I didn't feel a need to do so. I didn't feel strongly that something had to be this way or else and I trusted my doctors and nurses enough to help me make decisions if they were to arise. With Emma, however, I do intend to make a birth plan. Because it is such a high-risk situation, I want everyone to be on the same page as Tim and I (which should be on the same page as our Father in Heaven).

I was glad we met with them and I would recommend them to anyone in Utah.