Wednesday, December 31, 2008

Birthing Plan

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.

Tuesday, December 30, 2008

I Just Wish I Knew

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.

Thursday, December 25, 2008

Sunday, December 21, 2008

Movements

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.

Friday, December 19, 2008

Hesitant

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.

Tuesday, December 16, 2008

Another Ultrasound

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.

Monday, December 15, 2008

One Month Away

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.

Thursday, December 11, 2008

Good Luck Tomorrow

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.

Monday, December 8, 2008

Birth Announcements

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!

Saturday, December 6, 2008

Paranoid

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.

Thursday, December 4, 2008

We Are Loved

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.

Wednesday, December 3, 2008

Trying to Help

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.

Monday, December 1, 2008

No News Is Good News

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.

Sunday, November 30, 2008

Time Keeps Moving

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!

Thursday, November 20, 2008

Prepping Peter

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.

Wednesday, November 19, 2008

Slowly Preparing

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!

Thursday, November 13, 2008

Angel Watch's Second Visit

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.

Saturday, November 8, 2008

January 15th

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.

Monday, November 3, 2008

Big Baby

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.

Saturday, November 1, 2008

Hindsight

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.

Wednesday, October 29, 2008

Report about the birth and life of babies with anencephaly

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

Sunday, October 26, 2008

Emma's Bucket List

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?

Friday, October 24, 2008

We're Going on a Bear Hunt

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!
Swishy swashy!
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!
Splash splosh!
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!
Squelch squerch!
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!
Stumble trip!
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!
Hoooo woooo!
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!
Tiptoe!
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.

Wednesday, October 22, 2008

The Scriptures

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.

Monday, October 20, 2008

Emma's Movements

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.

Saturday, October 18, 2008

Empathy Etiquette

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.

Thursday, October 16, 2008

Angel Watch

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.

Wednesday, October 15, 2008

Pregnancy and Infant Loss Remembrance Today

Today, October 15th, is Pregnancy and Infant Loss Remembrance Day.
I know the day is almost over, but for any of you who have ever been affected (either personally or through someone else), this day is for you and your loss.
Know that you are loved.

Sunday, October 12, 2008

Ups and Downs

As with any situation, there are ups and downs. Today is an up day spiritually, but a down day emotionally (I just can not contain my tears).

It is amazing to me what a blessing Emma has been in our lives already. I thought I'd take some time while I'm already emotional and list many of the blessings that have come into our lives because of Emma.
  • more fervent prayers
  • the peace and comfort of the Savior in our lives
  • greater love for our children
  • renewed dedication to attend the temple more often
  • overwhelming love and support of those around us - I wish I could verbally express how much it amazes me how many people are there for us whenever, whatever, however
  • greater love and appreciation for those who support us
  • chances to share the message of eternal families with others
  • increased scripture study
  • humility
  • stronger desire to serve those around us
  • gratefulness for the plan of Salvation and eternal families
  • greater closeness to the Savior
  • increased understanding of the Lord's hand in our lives
  • new love and admiration for my dear husband
  • more empathy towards others
  • love - anywhere and everywhere

I know this isn't a comprehensive list. But I am sometimes overwhelmed when I stop to think what a huge blessing Emma has already been in our lives. I am so grateful for her and I pray that the Lord will let her be a part of our lives for longer still.

Friday, October 10, 2008

Angel Garden

As much as I'd love to never bury Emma, the time will come. I had been told by a couple of people that infants could fit into the same plot as an adult, without any extra fees or anything. Because of finances, this was my initial thought of what we should do. Tim has a grandpa buried in Springville and we both have grandmas getting up in age that live nearby. I thought I would see if either family objected to us putting baby Emma at the feet of one of her great-grandparents.

However, the Provo City Cemetery has an area dedicated to infants. It is called the Angel Garden. The pricing is much more affordable than that of buying and using an adult burial plot.

Last night we went to the cemetery to check out the Angel Garden. It's not gardenish at all. Besides the statue in the picture above, everything else is just grass - how you might expect a cemetery to look like. But I like it. I like the thought of her not being that far away. While we very likely will move away from here at some point in our lives, we're still here for the next 2 1/2 years for sure. And I like the thought of Emma being surrounded by Heavenly Father's other pure and innocent children. She'll fit in perfectly with them.

Thursday, October 9, 2008

My Little Scare

On Monday night Tim was supposed to get home at 5:30. I was getting dinner ready while also keeping an eye on the boys playing outside. At around 5:15 I felt something in my lower abdomen area that hurt. It passed and I didn't think anything of it. That is, until it happened again. After about the third or fourth one I started to freak out and wonder if these were contractions I was feeling. I knew I needed to go lay down, but dinner was still cooking on the stove and I couldn't leave the boys unattended outside. Luckily, Tim came home a few minutes early.

He pulled up and I greeted him with a hug, a kiss, and instructions. The table was mostly set, it still needed silverware. He was to cut up the pineapple, finish setting the table, make sure the boys didn't run into the street, clean them up for dinner, and then feed them. I was going to go lie down.

He looked at me mighty confused. I knew I would need to explain more, but I had been hoping to avoid that because of the fact I knew it would make me cry and I was tired of crying. But I did explain and then I went and laid down.

I was still pretty scared about the situation. I felt like if Emma was born now, she wouldn't be able to survive the birth process. I also had been told by doctors that because of the situation, if my body did go into premature labor they would do nothing to try and stop it. I kept frantically thinking, she's not ready yet, she can't come now. Then a peaceful feeling came over me and I felt comfort as I realized that whatever happens happens. I've been telling people that this is Heavenly Father's plan for us, yet I still wasn't fully ready to accept his plan -whatever it may be. I realized that if Emma were to come now, I would be okay. Yes, she probably wouldn't survive the birth process, but that would be okay. That would be what the Lord had in store for us.

I then fell asleep. Tim came in after dinner to see how I was doing. I woke up and the contractions had stopped. Being pretty hungry, I got up to eat. While eating the contractions started again. They were on and off for the rest of the evening.

I haven't had any contractions since then and I've been told since then that if it happens again I should drink a big glass of water and go and lay down.

As scary as that situation was, I'm grateful for it. I think Heavenly Father knew I still needed to be humbled about the situation and that it is in His hands. There may or may not be more situations like this to come. I'm grateful that this one came, but I'm also grateful that it's now gone.

Wednesday, October 8, 2008

Emma's Name

On Sunday my sister asked me if we knew what Emma's name meant. We didn't and she told us what she had found. I looked it up to confirm it, and sure enough, the meaning of her name is pretty appropriate.

Emma means whole.
When we decided on the name, we had no idea. But now that we know the meaning, I think it fits her even better than before.

Tuesday, October 7, 2008

What Anencephaly Looks Like

I don't want to leave a sour note first here on Emma's blog, so I thought I would try to show others what anencephaly looks like (via ultrasounds).

This is an ultrasound profile pic of a non-anencephalic baby at 20 weeks. In my opinion, you can clearly see the head and see that it is a profile picture. You can see a little where the eyes, nose, and mouth's locations are.
This is Emma's 20 week profile ultrasound picture. She's got her head a little more tilted up than the baby in the first picture does. The arrow is pointing right to her nose. A little more below her nose (but actually to the left a little in the picture itself) is her mouth (the other whiteish stuff around her mouth I believe is faintly her hand, because she had her hand by her head for a lot of the ultrasound). The dark circle on her face (if looking at the picture, down from the nose and only a tad to the right) is one of her eyes. The other eye is on the other side of her head which is not in this picture. Notice that her head stops just a little above her eyes and continues at a downward slant. It's not the regularly full and round head that you would see.

Grrr

I'll begin by letting you know that I got my feelings hurt and I'm not very happy about it. From that statement, you can choose whether or not you want to read the rest.

As in most situations where there's something "different," you can expect that people will say things that are unintentionally hurtful. I started to expect it soon after we found out about Emma. There have been one or two things said to me that I've thought, I would've preferred they had not said that, but other than that there wasn't really anything that really bugged me until today.

Last night I went to join two different anencephaly yahoo support groups. I still have so many questions that I just can not find answers to and I feel like the best resource is going to be those who have gone through the same thing. While there are several different anencephaly support groups, these are both for mothers who have decided to not abort their pregnancies. Before you can join you have to be approved by their group moderators. It makes sense to me - it's a very sensitive issue and you only want people who are going to support and uplift each other. So I had to give them some information about Emma and I before they would approve me. Today I got emails back from both of the group moderators. One accepted me and said she was sorry that I had a reason to join their group but hoped I could find great comfort out of that group.

The other?

My approval is still pending. This is what has really hurt me. Apparently, because we're planning on inducing me at 35 weeks, I don't qualify as a mother with an anencephalic baby who is choosing to still carry her. I need to carry to at least 36 weeks to qualify. If I can explain my situation better, I might be allowed into their group.

You might be thinking, how did that upset her? And I don't know how to explain it any better, just know that it did.

I don't think I'm going to reply. My first reaction was to reply back about how I was just as good as of mother as anyone else and she had no right to not let me into their "mommy and me" group. But then I thought about it and realized that she's probably the moderator because she's been there too and I don't want to make anyone else's life harder by being mean to them.

In trying to see the positive side of things, it did remind me that Tim and I need to make this 35 week thing a matter of prayer. Which was our intent from the start, but I had been waiting to make sure that the doctor was on the same page first.

I'm glad the other group welcomed me in with loving arms. I plan to use them as a great and helpful tool and resource.

Monday, October 6, 2008

Doctor's Appointment

Today was the first time I've met with my OB/GYN since the initial diagnosis. On the day of our ultrasound he wasn't in the office so I met with another doctor in the office. On Friday it was specialists from the hospital. Today it was him.

While Tim and I have accepted this as Heavenly Father's plan for us, I still break down and cry every time I start to talk about it. I'm an emotional person to begin with, add in that I'm pregnant, and then on top of that, it's just a tear-inducing situation. So, of course, as soon as my doctor walked in I started to cry. It was a little awkward because he had a high school intern with him.

I only had a few more questions for him this time because I got most of my initial questions answered by the perinatologist at the hospital. We did talk again about the options that we have in this situation. I let him know that we want to continue on with the pregnancy.

We then talked about when we would induce labor. Because these babies rarely cause spontaneous labor on their own, it's basically up to the patient and the doctor. Before going in to the doctor's office I had thought about when I thought was a good time. It was a combination of safety, convenience, and just what seemed good. It ended up being around my 35 week mark. Before I told the doctor that he suggested 34 weeks and I told him I had been thinking around 35 weeks. He said, "let's do it!" So that's our new goal: deliver a breathing baby at 35 weeks.

My doctor is also LDS, in fact he's a Bishop currently, and we talked a little about the spiritual aspects of this entire situation. As I read more stories of others who have gone through similar situations before, I become more and more grateful about the fact that everyone has told us that it's our decision to make and they will support us in whatever we decide. Some families have had to fight their doctors on their decisions. I feel that this is a huge blessing that the Lord has given us at this time.

Sunday, October 5, 2008

Thank You

The outpouring of love that our family has felt has been amazing. We know that with just us and the Lord, we can get through this. But with all of our family and friends rallying around us, I think it will make everything that much easier to get through. We love and thank you all for everything you do and have done for us. Please know that we will be there for you whenever you need us. I also want you to know that despite everything, we honestly do take joy in your lives, especially those of you who have babies or are pregnant. While I'm sure it will be a very real and hard grief that we will feel when Emma does die, we joy in the precious babies that are born and are so grateful for the miracle of life that does allow so many healthy and strong children to come into this world. I know what a blessing children can be and I pray for everyone to be able to experience that blessing.

Saturday, October 4, 2008

Emma

Since the majority of the time we'll get to spend with this little girl will be while she's inside of me we decided to go ahead and name her. So the new title of this blog will be:

Emma's Story

Friday, October 3, 2008

Today's Update

I hope I can remember everything correctly and write it out so that it makes sense to others.

We went to the hospital today to do some further testing and to talk with some specialists. I didn't really know what all this was going to entail going into it. We ended up having two ultrasounds done, one by the ultrasound tech and the other by the perinatologist. It was confirmed that our little girl has anencephaly (we were originally told that it's a pretty easy diagnosis to make - the brain's not there). It was also confirmed that she is a girl (and as I'm reading more on anencephaly, it turns out that it's more common in girls than boys). She also has a few additional problems. The umbilical cord normally has three parts to it, two of which are arteries (Tim will need to correct me if any of this is incorrect) and she is missing one of those arteries. She also has some water in her kidneys. The third thing is that there's a little gap in her heart. Tim might be able to remember the exact term or location. Basically, if this was her only problem, she'd have to have heart surgery as an infant. Given the situation that she will not live, she will not be having heart surgery. Both the umbilical cord and the kidneys are of no effect in this situation except to say that because of the other problems she has, it just seems like things with this little girl just weren't quite right from the start. As far as the heart goes, the perinatologist said that it will not affect her while in utero - she's getting her oxygen and support from me and that little gap won't affect her. If my understanding is correct, however, it might reduce her lifespan if she does survive the labor and delivery.

We then asked the perinatologist all of our questions - and I had a lot. As others we've associated with (and been very pleased with) the general feeling is we're here to support you in whatever decisions you want to make. A lot of my questions to her were more asking her to either clarify or confirm things I had read. If you're interested, I'll make a list of things we learned:
  • there aren't a lot of statistics out there because of the fact that many families choose to abort the pregnancies when they initially find out (so this skews the statistics of babies that die, etc.)
  • anencephalic babies are much more likely to be premature, as are any babies that have birth defects
  • anencephalic babies often don't cause a woman's body to go into spontaneous labor - the majority of these cases end up being induced
  • they are fine doing a c-section or having me do a vaginal delivery
  • the risk of the baby dying during birth greatly decreases with a c-section, but the risks involved to the mother greatly increase
  • anencephalic babies are in general smaller than other babies
  • because they do not have the full head, the vaginal delivery process may be a little different (i.e. the shoulders may be the biggest part to get through)
  • if she's breached and it's the feet first, her chances of surviving the delivery greatly decrease
  • if she's breached and it's the bum first, it does not change her chances of surviving the delivery
  • while some of these babies will die while still in utero, the bigger portion of the babies that are born stillborn, die during the labor and delivery process
  • they (meaning medical personnel) usually don't try to do anything medically to the baby after it's born - they want to allow the family as much time as possible with the baby while it is alive
  • if we don't want to see the openings (because there's no covering over the head), we don't have to - they can put a cap on her and swaddle her in a blanket
  • she does have bigger eyes (we found this out via the ultrasound) and then her head stops right above them and goes at a diagonal slant down
  • she's pretty active - even though I haven't felt her move that much she was wiggling through the whole first ultrasound and the tech really wanted her to stay still (they said that maybe I'll feel her more in a little bit since she's a little on the smaller side)

They also had us scheduled to talk with a genetic counselor and possibly do an amniocentesis today. We opted out of the genetic stuff. The perinatologist told us that a couple with chromosomes that when combined cause defects, have the chances of 1 in 6 of having a defect free child. Because of the fact that we have two healthy children already, she really doesn't think it has to do with genetics. Additionally, even if it was a genetic thing, it only slightly changes the chances of this occurring again. Which, in case you're interested, the chance of this happening originally was 0.1%. The chance of it recurring is about 3 to 4%. However, they insist that for my next pregnancy I take TEN TIMES the normal amount of folic acid for the two months leading up to getting pregnancy and for the first month thereafter. By doing this, we reduce the chances of this happening again to 1%. If it was a chromosomal thing, I think the chances of it happening again are somewhere between 1 and 3%. The only reason we would think to do any of the genetic stuff, is if it would help further research. While we might participate in some studies, the genetic stuff that they would have done at the hospital would really only be for our benefit and let us know if it was a chromosomal abnormality or not. And at this point, it doesn't really matter to us.

As a side note, Tim and I are no longer emotional wrecks. We are doing tons better, have fully accepted this, and are moving forward with what we need to do now. The initial shock did cause us much grief, and I'm sure there will be more to come when she does die, but for now we're doing much better than I thought either one of us would be doing. Thank you for your continued thoughts and prayers.

We meet with my OB/GYN again on Monday.

Thursday, October 2, 2008

Talking With Our Bishop

Late Tuesday night (the day we found this out) Tim asked the Bishop to stop by our house after a meeting they had together with some other people. The Bishop came by and we told him what we had found out and how we were hurting. He spoke words of comfort and we spoke a little about specific doctrines and other questions. Our Bishop left saying he would do his research and asking Tim to join him in a fast for Wednesday and he would return Wednesday night to talk more and to give blessings.

As planned, the Bishop came over last night. Both Tim and I were already feeling tons better about everything. We read from the Church's handbook of instructions about stillborns, when the spirit enters the body, abortions, and organ donations. Our Bishop said earlier in the day he had actually had a question that he didn't think the handbook cleared up, so he had called the Office of the First Presidency. Guess who was the person available to talk? President Monson. So we're pretty set now on what is correct, haha.

Talking about the abortion section was hard. We do fall under the rare circumstances category, but it doesn't mean that we're encouraged to do it by any means. Tim and I both agree that unless we feel a strong spiritual prompting to induce labor at this point (and abort the pregnancy) we will not choose that option.

Our Bishop put in a call to the Stake President to talk about the situation and to also ask if he knew our doctors. While I have one main doctor, on Tuesday he was out and I talked to his daughter who is another doctor that practices in that office. Our Stake President knows both of them and he said we're in good hands. He said they are the best of the best and they also are strong followers of the Savior and His Gospel.

Our Bishop had also been at a viewing right before he came to our house and he asked one of the employees at the funeral home about what they do for infants and the costs of those (something we had talked about on Tuesday night). While it is still a good chunk of money, it's not nearly as much as I thought it would be and we have the savings to be able to pay for it.

Tim, with the Bishop assisting, gave me a blessing. Then the Bishop gave Tim a blessing. The Bishop and Tim then left to go give another sister in the ward a blessing. When Tim came home, while he was eating (my amazing husband had been fasting for almost 24 hours), we talked about my blessing vs. the blessing he gave the other sister. He said he felt like he didn't really give me a good blessing. I don't remember what else he said, but he left it at he couldn't fully explain himself. Then we started to share our current thoughts and feelings on everything. I told Tim that I felt like we don't know what the Lord's will and we may not until it happens, but that we should move forward and take this one day at a time. Tim said that that's what he meant earlier by not giving me a good blessing (the Lord's will wasn't revealed). We both feel that we need to stay close to the Lord, do all that we can medically that is good for this little girl, and we will be just fine.

Before we even found this all out, Tim and I already had arranged with my brother to babysit today so we could go to the temple, so I'm looking forward to that experience. That's all for now.

Wednesday, October 1, 2008

Tim's Thoughts

I ought to write out a few of the thoughts I’ve had while I can.

I got to the doctor’s office before Tiffany and started hopelessly into some of my math homework, both excited to see my baby and anxious for all of the homework I needed to get done. The ultrasonographer was running behind and I was getting frustrated that she couldn’t keep her appointments on schedule. Forty-five minutes late we were finally called back into the room. Again I was almost angry that it was so late, but I was really excited to see the baby.

When it first came up on the screen, I was pleased to see the baby there. I thought it was amazing and I kept incorrectly guessing body parts as the tech scanned up and down the body. She measured a few bones and dimensions, but got up and left to get something. That made me a little mad too. I thought that of all things she ought to have everything that she needs. Then she came back with bad news. I made one light-hearted comment about a boy being the bad news and then the gravity of the situation set in. My little girl was coming to Earth without a brain and likely would not live to take a single breath.

I had not known how excited I would be for a little girl until I found that I may not get this one. My mind started racing of all of the things that she will miss out on and that our family may miss out on. I can only imagine holding her little hand in mine and watching her discover the world.

Now I pray with all that I have that she may still be able to live. Even one breath of air will assure that she can be Tiffany’s and mine after this life if we cannot have her now. It’s hard to know how much you can love an unborn child until something comes up. I continue to plead with my Heavenly Father letting Him know that I would do anything for this little girl. I also know that she is in His hands and whatever God decrees is right. I only hope that I can be strong enough to accept what I know to be true.