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


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


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] 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


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.