Tuesday, October 12, 2010

Elspeth's Birthday

Some people dream of angels...I held one in my arms.

Elspeth Allyson Mullen was born still on Oct. 5th at 4:22 p.m. She weighed 5 lbs. 9.7 oz and was 17 inches long. Elspeth had strawberry blonde hair, long fingers and toes, chubby thighs, lips just like her mamma's and the most beautiful, gentle face I have ever seen.
Ryan and I woke early on Tuesday Oct. 5th to start the induction process. We had hardly slept the night before in the hospital because the "cervical ripening" process turned out to be basically miserable. We were anxious and excited to meet our Elspeth finally. The pitocin started at 6:30 a.m. and I wasn't even dilated yet. After 2 hours of pitocin Dr. Sheridan came to see us. I still hadn't made much progress and he had some major concerns about a lengthy labor. He wanted to break my water to speed things up. Now, anyone who knows me would surely know how opposed I was about having my water broken. I had done research on anencephalic babies and it all had said that having the water broken was very difficult for these babies because the water acts like a cushion for their little tender heads. However, with the same concern I also knew that having a labor lasting >10 hours would also be very traumatic to my little Elspeth. We were stuck in between a rock and a hard spot. I looked to Ryan, we had to make a decision right away. Would we have my water broken and risk trauma to Elspeth's head or would we have a strung out labor that would be equally as difficult to Elspeth and myself? As I weighed the options, I felt at peace with having my water broken. I knew it was the right choice, even if the result would be deadly for Elspeth. It was the most difficult decision I had to make throughout the whole pregnancy and delivery. I know that Elspeth understands that I had to make this hard decision and that I wish it could have been different.

After my water was broken I felt tremendous relief. It turned out that I had undiagnosed polyhydraminos for the past several weeks. Almost 2 liters of amniotic fluid gushed out of me instantly and the pressure was gone. You'll have to excuse me, I am a nurse so I tend to leave in all the "details". Hard contractions started within 30 minutes of the water breaking and we were on our way to having a baby. With Ryan and my doula by my side I labored for approximately 4 hours before calling it quits and asking for an epidural. 4 hours may not seem like a long time, but with pitocin it felt much longer. I had contractions every 2 minutes and only 40 seconds downtime in between contractions for the whole process. The anesthesiologist came to place my epidural and after 3 attempts and 1 1/2 hours it finally worked. Ryan and I got a quick nap for about 1/2 hour. While I was sleeping I felt Elspeth coming. I alerted the doula and the nurse who confirmed what I had felt. Elspeth was coming, and she was coming quickly. In 10 minutes Dr. Sheridan had arrived and we were ready to start pushing. Elspeth was born about 20 minutes after the doctor walked into the room.

When Elspeth was placed on my chest I knew instantly that she was gone. The NICU nurses were all on standby to help, but it wasn't necessary. I didn't want any life saving measures for Elspeth, I wanted her death to be peaceful and uninterrupted. We wrapped Elspeth's body up in a warm blanket and I just held her close to my skin. I thought I was going to be so sad, but instead I was filled with joy to finally see the beautiful face of my daughter, to memorize every part of her. I talked to her like she was still with me because I feel that her spirit was still with me at that time. I told her how beautiful and lovely I thought she was and how grateful I am to be her mother. It was one of the most wonderful moments of my life.
Ryan's task was to bathe and dress Elspeth so we could call our families into join us to meet our Elspeth. I watched Ryan bathe his daughter with such love and care. He was so gentle to her as he talked to her the whole time. He told her how much he loved her, how beautiful she was and how special she was to us. Shortly after, we called our family into the delivery room so Ryan, our fathers and brothers could give Elspeth a blessing which in our religion is similar to a Christening. When our families came into the room there was such peace and reverence for our little baby. I felt so calm and at peace knowing that my baby was safely home with her Heavenly Father. Our family members took turns holding Elspeth for just a moment. I wish it could have been longer, but time was so limited.
When everything quieted down Ryan and I settled in for the night. The nurse told us that we had until 3 a.m. to spend with Elspeth because they would have to come and take her body to be prepared for organ donation. We were both so exhausted but I dreaded going to sleep because I would miss out on precious time with Elspeth. Elspeth spent the few hours we had left in bed alongside of me. My body kept her warm and it felt so good to have her with me for just a little while longer. When the nurse came in at 3 to take Elspeth away I felt the deepest sorrow I have ever felt. Elspeth and I had never been separated before and my heart was heavy as the nurse walked away with my precious baby. It felt like the best part of me, the best thing I have ever done was being taken away. Ryan and I cried ourselves back to sleep, holding onto each other and the memories of our daughter.

The funeral services for Elspeth were held on Saturday Oct. 9th at our church, The Church of Jesus Christ of Latter-Day Saints. Our Bishop and Stake President (local leaders) spoke about God's plan for our baby and reminded us that we will be reunited with her again. Their words were so comforting and perfectly matched for what we needed to hear. At the cemetery Ryan tenderly laid Elspeth's tiny casket into the ground and family and friends dropped a flower into her grave as a last farewell. It was a beautiful day outside, sunny and 70 degrees. The leaves on the trees had just started to change. Ryan and I decided that whenever we see the trees start to change it will be a silent reminder of our baby.

It's now been 10 days since Elspeth was born. I know that I have to slowly start picking up the pieces, and it's been much harder that I had anticipated. I left the house for the first time today and cooked dinner for Ryan in an attempt to imitate "normal" life. I feel like an imposter in my own home. One of these days I will be able to say Elspeth's name and instead of crying I will smile. There's something to be said of people have been through a loss like this...to those who have been here in my shoes I have a tremendous respect for you. I am looking forward to becoming strong and resilient again.

Monday, October 4, 2010

39 weeks

Bronchitis + 39 weeks pregnant = Exhausted. Sorry this post is so late, but technically this is my very last day of being 39 weeks pregnant. This past week has been terribly uneventful. It included me laying around in my pajamas for approximately one week while coughing up a lung and hoping my bladder doesn't give out in the process *sigh*.

Luckily after a lot of pampering and love (and strong antibiotics) I have recovered just in time to check into the hospital this morning for my cervical "ripening". The staff here at the hospital is so wonderful. The nurse and I just finished making a little bracelet for Elspeth together and the maternity coordinator and her secretary made a little hat just for Elspeth. I am so touched by their thoughtfulless.

I want to give a special thanks to so many of your emails, cards, letters, FB shout outs, etc from friends and so many of you that I have never even met. I have been touched deeply by your concern and love poured out to Ryan, Elspeth and I. There aren't words for the appreciation we feel for all of you.

I especially want to thank our families who have traveled many miles to be here with us tomorrow as Elspeth enters the world. To our parents, brothers, sisters, nieces and nephews...we love you more than words.

Elspeth is still holding strong. On sonogram this morning she was looking beautiful, still head down with a heart rate in the 130's. The nurse tells me that labor will probably be between 12-18 hours because I am a first time momma. I am a little distressed by this news but still keeping my head up. Statistics show that Elspeth chances of making it out alive sharply decrease after 10 hours of labor. I am holding onto the fact that no matter what happens in the end, Elspeth will always be my daughter. She will be just as beautiful to me alive or passed. Her imprint on my heart is never-ending.

This is it. I am 40 weeks tomorrow. We made it! I promised Elsepth that she would get every single day of her gestation and I am so happy that I was able to keep that promise to her. I will update you all for one final post after her birth.

I love you all.

Thursday, September 23, 2010

38 weeks

Today is my birthday, my 29th birthday. I had the most fabulously uneventful day. I got to be on-call for work and didn't end up going in at all. I slept in, cleaned house, watched old episodes of Glee from Netflix, skyped the family and got a delicious cupcake from a local bakery from a friend. Pretty much my definition of a perfect day.

Elspeth is coming in only 10 days! We went to the doctor yesterday and everything is looking great. She was extremely active during our office visit and made everyone smile, including Dr. Sheridan.

Elspeth is my best birthday gift. She has made this past year the most incredible adventure. I have had such a wonderful pregnancy, no major aches and pains, no morning sickness, etc. She is the best baby a mother could ask for. Today I can say that I have everything I have ever wanted for my birthday...a wonderful husband and a beautiful daughter. I am truly blessed.

I can best describe the emotional side of the pregancy as an "emotional marathon". I have never enjoyed running, and the best I have ever ran was a 5k, but what I do know about running is that the most difficult part of a marathon is the last few miles. Ryan and I are on the last few emotional miles of this pregnancy marathon and we are feeling the wear and tear of a long road. We have learned so much about ourselves. Marathon runners run hundreds of miles in preparation for their races. Ryan and I have "trained" for this pregnancy is a very different way. We have good parents who taught us to trust in our Heavenly Father and they showed us how to go to Him in prayer since we were small children. We have studied the scriptures and found comfort in the passages left by prophets of God. Ryan and I have relied on our faith and fortitude built up from many years through this time. We have been sustained and lifted up because of it. People may wonder why I can smile and laugh during this time and I can tell you that I know it's because I know that I am a child of God, He loves me. He knows who I am by name and Elspeth is one of His most precious daughters. I have felt the loving arms of my Savior around me as I have prayed for my daughter. I am so thankful for this testimony, to know who I am and to understand my eternal goals. I know that Ryan and I will be reunited with our daughter again someday and our joy will be so sweet when we get to see her perfected body along with her perfect spirit that we feel now.

Thank you everyone for your birthday wishes. You have all helped to make this day special for my little family.

Tuesday, September 21, 2010


Elspeth and I had a very special Satuday this past week. It started with a photography session with Julie Pinedo. We found Julie through Alexandra's House founder Patti. Julie's path to us started when she volunteered taking photos for children with cancer. Her work with these children lead her to Alexandra's House which is a peri-natal hospice house. Julie was so much fun to work with and bent over backwards to meet our crazy schedule. She really helped us to relax while we were getting our photos done and we actually had fun. We don't have the finished product yet, but we are hoping to get them this week. You can check out Julie's work at juliepinedo.com . I'm thrilled to have our first family photos to cherish forever.

Saturday afternoon my dear friend Celeste threw me a "shower of love". I felt extremely showered with love from family and my friends from church. It's terrible to admit, but I was really hesitant about having a baby shower because I felt self-concious about recieving gifts for myself. Ryan saved the day however when he suggested that we collect items to donate. He pitched the idea to Celeste and I, of course we loved it. After careful deliberation, we picked The Rose Brooks Center. The Rose Brooks Center is a shelter for battered women here in Kansas City. I was first introduced to this organization back in February at a women's conference held by our church. All of the ladies brought items to donate and then the founder spoke to us. She was inspiring and I knew that they would be the perfect choice. A battered women can be anyone, it's possible they could be pregnant or have small children. Now that I have a mother's perspective there have been so many times I have wished that I could give Elsepth anything she needs or do anything I could for her but in so many ways I cannot. These women feel the same way about their babies, they want to give their babies everything but can't because they are starting their lives over again. I wanted to make it a little easier for them and this project was a tiny dent in the list of needs for the shelter. We collected far more than I had expected. I am so grateful for the generosity of good friends.

The photo is of us preparing to unload the truck. From left to right Rose, Joan, Me, and Celeste's children Scout, Olivia and Asher. The best moment of the day was Joan's embrace. She transferred so much love into my heart through a simple hug, I couldn't help but to become a little bit emotional. These women's work is inspirational and amazing. I hope I can get involved in the shelter again soon.

Photos from the baby shower:

No baby shower is complete without tasty treats. Celeste, Shirley and Michelle did a great job keeping our sweet teeth satisfied. Thank you everyone who helped and participated.

Wednesday, September 15, 2010

37 weeks

This week's milestone is a celebration because Elsepth is officially a full term baby. 14 weeks into the pregnancy we found out that Elspeth has anencephaly. The doctors told me over and over again that she could pass at any time. They told me that she might not be very active. Basically they left us with very little expectations. This is not to fault our medical staff, I just think we all didn't really know what to expect. I had to go to the doctor on a weekly basis for several weeks just to check to see if she still had a heart beat. Those weeks were terrible, not knowing if my baby was still alive. Elspeth has beaten the odds and surpassed every expectation in several ways over the past 37 weeks.

So many people have told me that they are praying for a miracle for Elsepth. I am so grateful for their prayers and also hope for a miracle at birth, but I know that she has already been a miracle several times over. It's a miracle I could even become pregnant, it's a miracle that Elspeth didn't miscarry in the first fragile trimester, it's a miracle that she has made it to be a full term baby. Who knows what else she has in store?

So, I decided to celebrate Elsepth's full termness by going out with my dear friend Celeste. We went for pedicures (as you could see from a previous post that I really needed one), and then went out to eat disgustingly unhealthy cheese french fries. It was great! With so much to mourn, it was refreshing to celebrate.

You all probably think I am obsessed with my feet. I guess I am a little bit, especially since I can't see them anymore.

This week's doctor update is extremely uneventful...thankfully. No dialation or contractions (I know it's TMI). It's looking like we are still headed for an induction on Oct. 5th as previously planned.

Sunday, September 12, 2010

Reality Check

Yesterday Ryan and I recieved a tough reality check. I came home from work last night and I realized I hadn't felt Elspeth kick at all yesterday. I got settled into my comfortable chair and sat still waiting to feel her familiar and friendly kicks. Nothing. After about 2 hours I started to panic. I called Ryan who was at work and told him the situation. Ryan was wonderful, he stayed calm and we said a prayer and asked God to help me feel Elsepth soon and to know what to do. We discussed going to the hospital or calling the OBGYN but decided to just wait it out. I hung up the phone with Ryan and my sister Annah called. She helped me keep things in perspective and calmed me down. While I was talking to my sister Ryan had an interesting experience. A NICU nurse walked right into his work and saw the worry on his face and asked him what was wrong. Ryan told this stranger what was going on not knowing her profession. She was able to calm his fears so that he could be a better support to me. Of course early this morning around 4:45 a.m. Elspeth woke me up beeping and bopping around like a ninja baby. She was exceptionally active for a good part of the day today too.

3 lessons learned
1. I am not nearly as prepared as I thought I was to have my baby die. Last night was a painful insight in the weeks to come.
2. God answers our prayers through other people. Maybe it's family, maybe it's a stranger.
3. Proverbs 3:5 "Trust in the Lord with all thine heart and lean not unto thine own understanding". We talked about this verse in Sunday school about 2 weeks ago and it's been on my mind ever since. I can't even tell you how many times I have asked Heavenly Father "why me? why my baby?" I have tried justifying and rationalizing this situation over and over. The only answer that makes any kind of sense is that this is God's plan. He loves me and I have to trust in Him. Maybe someday this will all make sense.

Oh, I liked this quote I "overheard" on my online support group.
"Death leaves a heartache no one can heal and love leaves a memory no one can steal."

Wednesday, September 8, 2010

36 weeks

Have you ever seen a cloudy day, the kind where everything looks gray and depressing? Then suddenly out of nowhere there's a part in the clouds and a little ray of sunshine will break through and light up the path in front of you. Today, we got a little ray of sunshine when we found out that Elspeth has turned back around and is now in perfect birth position! Maybe it seems small but it's something that has weighed heavily on my mind these past two weeks. It has been in my prayers to have a smooth labor and delivery and now we are one step closer to that goal.

Another bonus is that we got some measurements on Elspeth too. We found out that Elspeth's femur and humerus are measuring a week behind. We don't really know why this could be, but I have some theories. Maybe it's because first babies are smaller than subsequent babies or maybe it has to do with her birth defect. It's impossible to get a measurement on her weight because weight is measured by a calculation between the head circumference and the femur. The sonographer took the best measurement of her head circumference that was possbile and figured out that if Elspeth had a completely formed head she would weigh 5 lbs and 7 oz right now. Since most of her head is missing it's speculation on her weight...she could weigh anywhere from 1/2 lb to 1 lb less than estimated. So my best guess is that she is weighing in somewhere near 5 lbs with about 2 more to gain before birth.
The photo quality is really poor. I must have taken this photo 10 times and this is the best it could get. It's a shot of her face...well half of it. When the sonographer saw this shot she said "what chubby little cheeks!" It's very difficult to get a shot of Elspeth's head and face at all because her head is so small and it's usually squished right up into some part of me. Visible in the photo is one eye, part of her nose, mouth and the mass of white is her chubby cheek.
Her little foot measures 7.5 cm or about 2.5 inches long. Errggg, I wish these photos were better. I will put them in the scrapbook and it will be much easier to see them then.

We are down to weekly checks at the doctors office now that I am in the 9th month. I can't believe that we're on the home stretch. This pregnancy has gone by so quickly. Even though I am ready for a full night of sleep and my back to stop hurting I am not quite ready to let my baby go yet. I am still looking forward to the next 26 days with Elspeth.

Thursday, September 2, 2010

35 weeks

It has to be more than coincidence that I have so many perfectly placed people in my life right now. The more I think about it, the more I realize how many people that are dear to me are exactly who I need for this period in my life. It's almost like a have a huge circle of love wrapped around us specially built for just this moment. I can honestly say that I have never felt more loved than I do right now. Friends have become family, extended family have become close family and immediate family have become even more tightly woven in my heart.

The most important thing Elsepth is teaching me is that family everything. I always knew that Ryan and I were a family before Elsepth was in our lives, but she has altered the dynamic for the better. Before I was expecting Elspeth I would always tell Ryan that I wanted a family of my own and to have the opportunity to be a mother. Thank you my baby for making my dreams come true.

I finally figured out how to set my camera up so I can take my own photo...don't judge the pajamas, they feel so good these days!

Oh, there's my feet! Wow, I need a pedicure. Good night readers. Thank you for your love and support.

Sunday, August 29, 2010

34 weeks

At our visit this week Dr. Sheridan told us that he thinks that Elspeth may be breech at this point. I wish you all could have seen his face when he told me, completely heart broken. I kind of sensed that something was going on because he was having trouble finding her heart beat with the doppler. I am not giving up hope though and I know that she still has plenty of time to turn around. I found a great website http://www.spinningbabies.com/ that talks about how to know if your baby is breech and some "home remedies" on how to get your baby to turn around. I haven't tried anything yet, but I am seriously considering it.

I am still resolved to deliver Elspeth the good old fashioned way, even if she is breech. Thankfully Dr. Sheridan has agreed to this also. I can't say enough how thankful I am to have a doctor who supports me in every decision I have made. He has never questioned my decision to carry Elsepth to term and has treated me just like any other patient with a normal healthy baby.
Through the past several weeks I have recieved some really thoughtful letters, cards and gifts. One special gift came all the way from South America this past week. My sister-in-law is from Concepcion, Chile and her dear mother sent me the most beautiful pair of hand-made booties for Elspeth.
My heart is so touched to know the hours it must have taken Mima to make these beautiful little booties for a baby she will never get to meet and that lives so far away.

The girls at work also had a special suprise this last week too. They gave me a "Thumbies" fingerprint necklace. The company sent me a kit to take Elspeth's fingerprint after she is born. I am supposed to send it back in and they will send me a pendant necklace that has her fingerprint lazer engraved on it. I love the idea that I will always have Elspeth's impression near to my heart.

Other memorial items I am working on is a large scrapbook. The moment I found out about Elspeth's diagnosis, my dear friend Celeste encouraged me to keep everything I can to make a scrapbook. I have collected quite a pile of cards, sonogram photos, etc that will be included. I think it will take my whole maternity leave to compile it together! I also have a kit to take Elspeth's hand and feet prints and frame them. I can't express enough how thankful I am to everyone in facilitating these memories.

I just can't believe how close we are getting to E's delivery day. According to baby center, I am supposed to have my hospital bag packed by now...I haven't even started. Drop me a line and tell me something that you packed that you found helpful/essential.

One last note, my heart goes out to Amber on my Anencephaly Blessings from Above group. Her son Caleb passed away yesterday. He was born on Aug. 6th and lived until Aug. 28th. Thank you Caleb for giving me hope.

Tuesday, August 24, 2010

33 weeks

Ok, so technically I a little late for a 33 week post. It has just been such a great week that I totally forgot to post my Elspeth update. My youngest brother Jake came home from Paraguay, he served as a missionary there for the past 2 years. We had a wondeful weekend with family and I was way too tired to post until now.

A gem for you:


Let me know if this link works. It's a five minute video about a family in Brazil and their daughter with anencephaly who lived for 1 year, 8 months and 12 days. Inspirational!

Another exciting and nerdy event. I have a "birth buddy" on my anencephaly online support group. Her name is Melissa, she is a school teacher in New Orleans. She is due Sept. 30th and her baby with anencephaly is also her first pregnancy just like me. She is also planning on using a doula. I have really been looking forward to her emails where she and I can talk about anything. It's been wonderful to have a friend who is going through this too and to know that someone else has the same deep secret thoughts that I have, but I'm am too scared to say outloud.

We're going to the doctor again on Thursday so hopefully I will have more updates.

Sunday, August 15, 2010

32 weeks

This week was not only productive, but very positive too. It started with the visit to the hospital for our pre-registration paperwork and a tour. The RN who did our interview was very compassionate and understanding. It seems like everyone who has helped with this whole process has just bent over backward to make our experience the best possible under the circumstances.

The other great news from this week is that Elspeth's induction date is set! We will check into the hospital for some pre-treatment the night before the induction on Monday October 4th. Then early on Tuesday October 5th the pitocin will start. Some of you might ask, why are you having an induction? The answer is simple, anencephalic babies just don't know when to come. Some doctors believe that birth is triggered by a hormone secreted from a baby's brain. This hormone starts contractions. Since anencephalic babies don't have anything more than a brain stem, they do not initiate labor. Before the days of sonography, women who were overdue by more than 2 weeks or so were suspected to have anencephalic babies. Sometimes these women went 4+ weeks overdue because they didn't understand about anencephaly the way they do now. I have chosen to induce on Elspeth's due date instead of earlier like I had originally planned because I am hoping my body will be more ready for labor and maybe it will go a little more smoothly. We are also hoping that Elspeth will be strong enough by 40 weeks to make it out alive, literally.

Speaking of labor and birth, we had our birth class yesterday. We found a doula named Vanessa Flood through the hospital. She often teaches large group classes but agreed to have a private class with Ryan and I in our own home. Having spoken to several other people in the past I am so grateful that we had this private session for many different reasons. Vanessa made the class applicable to me and let us ask as many questions as we wanted and made it fun too. I really feel relieved after having her come over about the whole labor process. Other people that I have spoken with about their classes said that it was boring, generic and not very helpful. This is totally not the case with Vanessa, she made me feel confident and strong...at least for now. Maybe my really strange nightmares about giving birth will let up for now...I could use a break from dreaming about giving birth naked in a room full of people I knew from high school.

Here's a photo of Vanessa and I on our "birthing" balls.

I am ready for week 33 coming up this next week. So many of you have asked "how do you feel?" I feel good physically, emotionally worn out on most days. I am really lucky because I haven't gotten swollen yet and my back only hurts on days that I have worked a 12 hour shift so I can't complain. I really feel that my Heavenly Father has blessed me to have such a wonderful pregnancy and I will be eternally grateful for such a gift!

Tuesday, August 10, 2010

31 weeks

This past week I have been thinking a lot about women of the past who have lost their babies due to illness or birth defects. I think the only big difference between their situation and mine is that I have known since 14 weeks of pregnancy that I would lose my baby whereas they had no anticipation of what would come. I have had this thought frequently lately; which one would be more difficult, to lose a baby without explaination or to know well in advance exactly what you were in for? I guess my conclusion is this, I am grateful for the knowledge of what is to come. I am also very grateful for this time of amazing technology and resources. 100+ years ago a mother who had a baby with anencephaly would never know what happened to her baby, she would never understand. She might not have even been permitted to see her baby. She might have even been ostracized by society for having a baby that looked different. I am so blessed to live in this time where I can understand what happened to my Elspeth and to celebrate her life with dignity.

Another frequent thought I've had is about mothers who give their babies up for adoption. I have come to empathize with these women. I have formed a newly found respect for mothers who want to give their children a better life than they can give them. I now truly can understand the feelings that they might experience. There was a tv show on ABC last fall, I can't remember the name of it, but it reunited mothers and children who were separated by adoptions. I started to watch the show because Ryan and I had begun discussing adopting a baby after two years of infertility. I watched the show a couple of times, and the running theme from the mothers was "I thought about my child everyday and wondered if I had done the right thing". I wonder if I will feel the same way...will Elspeth occupy my mind every day? I hope so! However, I hope that I will not be riddled with guilt like the mothers on the tv show.

I think I might have too much time to think. This is what happens when I have way too much time on my hands, which unfortunately is the case currently with Ryan working and going to school. Also, my apologizes to anyone who might have been offended by my last post. My intent wasn't to offend, just to express some intense feelings.

Again, thanks for reading. Elspeth and I are doing fine. We have a big week coming up for 32 weeks and I will have lots to post next week including our 32 week check up, hospital visit and birth class!

Monday, August 2, 2010

30 Weeks

Warning, this post expresses strong opinions.

I joined this group on Facebook called Anencephaly Angels and I just can't believe some of the things I have read. This site is not a pro-life site like the Anencephaly Blessing From Above online support group, that I have talked about in the past on the blog. I am sitting here reading posts from mothers who chose to induce labor after finding out their baby had anencephaly...sometimes as soon as the following week and even the next day. These women have talked about how their babies were born "asleep" at 16, 17, or 18 weeks. They aren't asleep, they have died! They died because their mothers never gave them a chance to live. The term these women have used is "pregnancy interrruption". Pregnancy interruption = abortion. Elspeth will die on her own terms and her terms alone.

Ok, I know that this post is terribly prejudiced. Looking back at myself when I found out about Elspeth's diagnosis at only 14 weeks I was devistated. However, I cannot in anyway imagine choosing to end her life at that time. I would have missed out on so many wonderful experiences that we have had together in the last 15 weeks, and there are so many more wonderful moments that are yet to come. I would have never felt her kicks, hiccups and wiggles. Ryan wouldn't have experienced any of that either.

I guess these women will never know what they missed out on. Every day carrying Elsepth is very difficult emotionally but it is worth it. Many years from know, I will be able to look back and I will know that I did everything I could for my daughter. I gave her everything in my capability and I won't have any regrets. This is the best peace of mind any mother could ask for, no regrets.

I hope this post doesn't sound angry, because I am not angry. I am grateful even more tonight for the choices that I have made. There is going to be a long road ahead of me for the next two months. I just want to thank you for your prayers, support, phone calls, letters and love. So many of you have expressed concern about saying something "wrong". I want to assure you that you have not. Saying nothing at all is more painful than saying anything. Thank you to all of my readers. There have been people who I have never expected that have been reading and some people who I have never met at all. You have all touched my heart so deeply, thank you.

Remember grief is not something that you get over...
It's something that you walk through.
My shoes are worn and my feet hurt from this walk.
-Author Unknown

Tuesday, July 20, 2010

29 Weeks

Today we went in for our 3D sonogram. There was so much build up to this day that I was worried I would find myself dissapointed, but thankfully it turned out to be wonderful even though Elspeth was an uncooperative participant. Jeanette Burlbaw is a sonographer who volunteers her time to families who need peri-natal hospice services. She was referred to us by Alexandra's House. Jeanette is not only a very talented sonographer, but also a compassionate person. I enjoyed every minute of our two hour session.

Elspeth's face was tucked into her chest and her head was squished up against my bladder. Then to top it all off, her hands were in front of her face for most of the sonogram...well, until I took a short break and jumped up and down. The sonographer said it would help her to change positions. She did finally move her hands for a brief moment, but it was still very difficult to see her face, which could be viewed in profile only. Jeanette said there was plenty of space for Elspeth to move around in, but she was content to keep curled up in a ball.

The biggest positives discovered from the sono were #1 Elspeth is still head down (wahoo! I'm hoping for a vaginal delivery and NO C-SECTIONS!) #2 Elspeth's growth is right on track #3 No polyhydraminos complications. #4 Elspeth is still very much a girl. Her favorite and most frequently photographed body part? You guessed it, her bottom and other such areas down there. The sonographer said she loves to show off her little bottom, a trait in which I credit to her father.

Here are some of the highlights:

Arms up by her head and covering her face, her favorite position.


Hands folded together.


Left arm and knee.


Knees bent.


Sweet little foot.


Hand resting on her knee.


Legs crossed, like the lady she is.

2D shot of her face. It's was the only way to see her face. Her hand is up by her eyes.

There are several more shots but these are the best. A big thanks to my Mom and sister Allyson for coming with Ryan and I to the appointment. They both helped make it a fun experience instead of depressing and that was very much appreciated.

Saturday, July 17, 2010

28 weeks

I have an online support group called Anencephaly Blessing From Above (ABFA). I know that I have probably talked about them on the blog before, but something this week happened that was exceptional.

Someone started a message that said, "The happiest thing was when..." and everyone filled in their blanks. Someone wrote, "The happiest thing was when my daughter cried just once after birth just moments before she passed away." Another wrote, "The happiest thing was when the baby moved for her first and only time after birth while in her father's arms. It was a gift!" And another example, "The happiest thing was when we found out that our baby was really alive for two hours and we didn't even know it until the nurse discovered her heart beat. We thought she was gone, but she wasn't."

There were several other examples like that, but it was so nice to hear some happy memories out of such difficult moments. These women are truly incredible and inspirational.

I have a few of my own happiest moments from this week (28 weeks). The happiest moment was at the doctor's office this week. We heard Elspeth's heart beating with the aid of the doppler (147 BPM). Ryan was able to come to this appointment too. I never realized how much of a difference Ryan coming to the appointment makes to me. I feel so much more relaxed when he's there. It's like I'm not alone in this situation.

Another happiest moment was when Kate our social worker and therapist came from the peri-natal hospice group "Carousel". She comes about once a month to just check in on us and counsel us. She has wonderful insight and I appreciate her visits so much.

Our final "happiest moment" is looking forward to the 3D sonogram that will be taking place in only 3 more days! I hope to have the photos up on Tuesday the 20th.

Sunday, July 11, 2010

27 weeks

Our big Elspeth event this week was our trip to the funeral home to start making some preliminary arrangements. I knew this day was going to be very difficult for me, but there were a couple of suprising moments of peace. I felt much calmer than I had anticipated. We drove up to the site of her future grave and had the chance to take a moment and remember my niece Marcela Mae Clark who passed shortly after birth on May 4, 2007. Our Elspeth and Marcela will share a grave in the family plots there. My grandfather's grave is also located there and it was so lovely to know that Elspeth will always be surrounded by people who love her.

Thank you to everyone who called me or thought about us last Friday. We needed a lot of support that day and you all came through for us.

On a very happy note, Ryan felt his first round of Elspeth kicks. One afternoon she was really wound up and was kicking consistantly around my belly button. She may have had a serious case of the hiccups. Ryan came home at just the right time and was able to experience that for the first time with certainty. It was a wonderful moment to watch his face as he felt his daughter's movements. Pure joy.

She has several moments in the day now when she really gets going with her legs and arms. I can distinguish the difference now between a kick and a punch. Sometimes her arms and legs are going at the same time (that's when I make sure the bathroom is nearby). I am enjoying her so much and feel so blessed that she is apart of my life.

26 weeks

Another ultrasound this week. The tech tried to get a good look at her face but she made it a challenge because she kept sucking on her arms. Her belly was full of amniotic fluid which means that there should be no complications of polyhydraminos for me (yeah!). We are counting every blessing.

On the left you can see her hand beside her right eye. Her mouth is wide open, mid-swallow. More images to come soon when we have our BIG 3D/4D sono on July 20th.

Monday, June 28, 2010

Ryan's post

As members of the Church of Jesus Christ of Latter Day Saints, we believe that families can be together forever. This is a blessing that both Meredith and I look forward to someday. We believe that through Priesthood authority (Matt. 28: 18 God's Power) a husband and wife can be sealed together forever in one of our temples here on earth. Under this sealing our Elspeth and our future children will be with us when we depart from this life. This is a comforting feeling for us as we ponder our future and what it holds for us and Elspeth. God has provided this unto us if Meredith and I are faithful unto Him and do as He has asked. We love our little unborn daughter and could not bear to think of eternity without her. We also believe that children before the age of 8 who die will be guaranteed a spot in God's kingdom. So we know that our perfect little angel will already have her glory given to her as she departs this life. God will give her to us for a brief moment so she can gain a body, something which is vital in the plan of our Father in Heaven, she will then be back in God's arms to stay safely forever. We know it will be tough for us not to have her with us but there is hope, and Meredith and I come back to this knowledge whenever we feel down to lift us up and and give us patience and love.

Tuesday, June 22, 2010

Thought of the Day

"Sometimes love is for a moment. Sometimes love is for a lifetime. Sometimes a moment is a lifetime."


I am really looking forward to our moment together.

-Your Momma

25 weeks and Father's Day

Father's Day was uneventful at our house. It was Ryan's first Father's Day and I worked the whole weekend. He did however get a really lovely card from Alexandra's House staff. Alexandra's House is the peri-natal hospice house in Kansas City that has been working with us. On the inside of the card it had a really lovely poem:

A Father Means...
A Father means so many things...
An understanding heart,
A source of strength and of support
Right from the very start.
A constant readiness to help
In a kind and thoughtful way.
With encouragement and forgiveness
No matter what comes your way.
A special generosity and always affection, too
A Father means so many things
When he's a man like you.
-Author unknown
I suppose I am on a poetry kick because I found another really sweet poem that I touched my heart.
I Remember You
The world may never notice
If a rosebud doesn't bloom
Or even pause to wonder
If the petals fall to soon
But every life that ever forms,
Or ever comes to be
Touches the world in some small way
For all eternity.
The little one I longed for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do
Every beating of my hearts says
"I remember you".
-Author unknown

Friday, June 18, 2010

24 Weeks

Every Tuesday is the day Elspeth turns another week. Tuesdays have become a dreaded day because I want so much for this process to slow down in many ways. This week I have been thinking a lot about the "age of viability" for babies. 24 weeks has been the traditional time when 50-70% of babies can be delivered and are able to survive with a lot of medical support. I think that for most pregnant women, this would be a sigh of relief to get this far in a pregnancy. It's been on my mind this week because I know that no matter how big or old Elspeth gets, there's no possible way any medical professional can save her.

On another note, this week Ryan has been trying desperately to feel Elsepth's movements from the outside. Her movements feel so obvious to me, but it's still a little difficult for him to detect. We are really looking forward to the day were he can participate and feel a little of what I am experiencing.

We met with the hospice social worker this last week. Her name is Kate and she works for Carousel Peri-Natal Hospice which is a division of Kansas City Hospice. She came to our home and met with us for about an hour. She provided us with a lot of information to think about including an outline for typical birth plan for a peri-natal hospice baby.

Some things covered on the birth plan are:

We want/do not want our baby's heartbeat monitored during labor.

If there is a loss of heartbeat prior to delivery, we do/do not wish to be informed.

We request that a ceremony (blessing, baptism, etc.) be performed in accordance with our religious beliefs by __________________________.

It goes on for about two pages with several different things to think about as we go into this birth. Almost every detail is covered. I am really thankful for this list because as a woman who has never given birth, I have never thought about what I would want during the delivery process regardless if it was a healthy baby or not.

Kate also left us with a book called "Empty cradle, Broken Heart: Surviving the death of Your Baby," by Deborah L. Davis, Ph.D. I have only just begun to read it but I am finding the content helpful. It covers everything from what to expect with your emotions to what to do to stop your milk supply from coming in. All good information for me to know and I am finding myself more and more grateful for resources to help us through this time.

More to come next week, thanks for reading, your prayers and support.

Tuesday, June 8, 2010

23 weeks

I started to feel Elspeth little kicks about 2-3 weeks ago. It's amazing how much stronger and more frequent I can feel them now. It's not to the point where I am uncomfortable, so I am really enjoying it.

We (Elspeth and I) went to the doctor today. Dr. Sheridan was able to find her heart beat so quickly. When she was smaller he had to hunt around for awhile and listen very closely until he was sure it was her heart. Today, the second he placed his doppler on me we could hear her heart clearly. I don't think I will ever become tired of listening to her heart.

Today I had a really good day. Elspeth is 23 weeks today. She is almost one foot long and weighs a little over a pound. I have been happy and content today even with the torrential rain storms beating on the house.

Thought for the day:

"Contentment springs from within ourselves. It springs from our thoughts. Outward circumstances will be contributive to it, but it is our attitude toward those exterior things which will determine our contentment..."

I am trying to chose to be content with my circumstances and I hope this attitude sticks around. It has for today at least and that's enough for now.

Friday, May 28, 2010

3D Sonogram Scheduled

When Ryan and I went to see the people at Alexandra's House they gave us a folder of information with services people in KC were donating to parents of children who need peri-natal hospice. Today, I called the sonographer who does 3D and 4D sonos for free. We scheduled an appointment for July 20th when I am 29 weeks pregnant. I will post images of Elspeth that day and they should be amazing!

Lilypie Pregnancy tickers

Tuesday, May 25, 2010

Elspeth Allyson--how did you come up with that?

First of all, I would like to give Ryan some credit. He was extremely flexible with my choices on the baby's name. The day after we found out Elspeth's diagnosis I came to him and said, "The baby's name is Elspeth Allyson." Ryan said, "that sounds like the right name." We didn't even know if it was a girl or boy at that point and we hadn't seriously discussed any names either (I was only 14 weeks pregnant). I can't say how, but I just knew that's who she was and felt at peace when I finally recognized her for her true self.

Elspeth, pronounced "Elle-speth", is a derivative of Elizabeth. It's meaning is "consecrated to God". That's exactly how I feel about my Elspeth, that I am giving her right back to God immediately. My nine months with Elspeth is going by so quickly, but it's a constant reminder that God is trusting me to take care of her for this little while and then He will call her home again. She is first and foremost our Heavenly Father's daughter, and mine second.

Elspeth also has special meaning because it's my middle name. I have always been fond of my name, Meredith Elspeth (good job Mom and Dad) because of it's originality and because of the special woman whom I inherited it from.

Elspeth Seville was a woman that my dad found as a missionary in Scotland many years ago. Elsie was a woman of remarkable character and against a lot of critism from friends and family she accepted the Gospel of Jesus Christ was baptized. Elsie lived a hard life, as a widow she worked as a hotel maid in Scotland to support her children. My dad describes her as a "hard looking woman with a soft kind spirit." Elsie kept in contact with my parents after they had married until her death 1975. She was faithful and true to her testimony for rest of her life and her legacy lives on through her own children and now myself.

Allyson is the name of one of my beloved sisters. She is my oldest sister and we have shared many of the same trials with infertility together. Sharing this burden with each other has bonded us together forever. I am so grateful to have her in my life because she truly understands the pain of not having a child of my own. I will always be grateful for her support and love. Giving my daughter her name is a way in which I would like to honor her. (Allyson, you are probably going to kill me for posting this but hey, it's my blog and I can write whatever I want on it).

What is anencephaly?

Wikipedia says, "Anencephaly is a cephalic disorder that results from a neural tube defect that occurs when the cephalic (head) end of the neural tube fails to close, usually between the 23rd and 26th day of pregnancy, resulting in the absence of a major portion of the brain, skull, and scalp. Children with this disorder are born without a forebrain, the largest part of the brain consisting mainly of the cerebral hemispheres (which include the neocortex, which is responsible for higher-level cognition, i.e., thinking). The remaining brain tissue is often exposed—not covered by bone or skin." http://en.wikipedia.org/wiki/Anencephaly

You may be thinking..."what? In english please!" Basically, Baby Elspeth's head didn't close up during the early stages of pregnancy. Therefore, her brain didn't fully develop. She only has a brain stem which allows her basic functions of life while she is with me. Without my "life support" she will only be able to function for a short time, if at all.

What will Elspeth look like when she is born?

Her head is open and exposed. She has no scalp, skull or even skin covering her brain. She also might have bulging eyes from her sockets. There are possibilities that there might be other common birth defects like a cleft lip. We hopefully will know more details when I have 4D sonogram later in the pregnancy. I hope that those who come to see Elspeth will not be alarmed by her appearance, it's actually something that I worry about a lot. I think that knowing what she might look like before will help those who see her to be prepared. To me her spirit is perfect and beautiful, so I am not afraid.
The photo is from this site: http://www.anencephalie-info.org/images/med_sketch.gif

How long with Elspeth live?

We have no idea! Everything I have read says that the survival rate through birth is only 25%, so we have a very good chance that she will be born still. We are hoping and praying for a little time with her...an hour would be nice.

Will carrying Elspeth to term hurt me?

No, it will be like a normal pregnancy. I have just started to feel tiny kicks and wiggles. The birth will be normal like any other baby. Well, that's what I have been told but I wouldn't actually know because I haven't had a baby before. There is a greater risk for having a breech baby with anencephaly because these babies are notorious for not turning around. Another complication could be a condition where the baby doesn't swallow the amniotic fluid and it builds up. This is called polyhydraminos. Luckily, on our last sono Elsepth's stomach had amniotic fluid in it so I am encouraged by this finding.

How/why did this happen?

Again, another unanswered question. Anencephaly is a neural tube defect which basically means a folic acid deficiency. We have no idea how I was deficient in folic acid because I took pre-natal vitamins for several years before concieving. So, why did this happen? Because it's God's will. That's my best answer. He knew I was the right mom and Ryan was the right Dad for this sweet baby.

Will this happen again?

Perhaps. Women who have babies with anencephaly have a 1/2,000 chance of having another baby with anencephaly. They also have an increased chance of having another baby with a neural tube defect like spina bifida. The plan is to load up on rediculously high doses of folic acid before trying to concieve again and pray for the best! Many many women on my support group have multiple healthy pregnancies following a baby with anencephaly.

I think I have covered the most "common" questions that people have asked me, but if you have a different question feel free to post it. I might not know the answer yet, but I will try to find out for you.

Monday, May 24, 2010

Our Family Begins

Ryan and I were married in March 2004. Time passed quickly and a couple of years later we knew it was time to start our family. Except, no baby came. After two very difficult and emotional years of trying to concieve we were blessed with a miracle. We first welcomed Baby Mullen on January 30, 2010.
As you can all imagine we were thrilled to finally have an addition to our family. Our first sonogram was Febuary 9th and we found out that Baby Mullen was 6 weeks along. She was the most beautiful tiny blob with a pulsating heart.

Again we had a sono only two weeks later. Our OBGYN, who is extra cautious, wanted to make sure she was going to stick around.

Now she was two blobs with one tiny little arm sticking up. Amazing progress for only two weeks!

Another sono was done on March 17th for our 11th week checkup. Everything looked great and after a lot of reassurance from our physician we were finally started to feel some of the anxiety eased.

April 8th was D-Day (Diagnosis Day). I woke up for work at 5 a.m. and found some spotting. I called the doctor's office and they recommened that we come in for a check up and sono. After 4 tense hours of waiting we head in for a sono. We were so excited to see the progress the baby had made. When the sono started we instantly started smiling and talking about the baby's arms and legs kicking and wiggling. Her heart was pounding away and we could palpate the love growing between us and our little baby. We didn't have any idea that the sono tech wasn't looking at wiggly legs and arms or even her heart. She was looking at her head.
Dr. Sheridan was wonderful when he broke the news. He came right out and said, "there's a problem with the baby's head. It's too small. It's looks like the baby has anencephaly. I am so sorry." I didn't even know what anencephaly was but I knew it couldn't be good. I made him write it down on a piece of paper and explain everything he could so I knew exactly what I was going to deal with. He told me that he wanted me to go see a peri-natologist as soon as possible to confirm the diagnosis.
The rest of the day was agonizing. I didn't know what to do, should I be sad or hope for a miracle? Many friends and family came to our aide that day. They sat in my living room and shared my tears. I am so thanful for you all that helped us that day. We couldn't have made it without you all.
The next day we saw Dr. Loo with St. Luke's peri-natology group. We had a level II sonogram and again we saw the same beautiful site as the day before. My mom came with us to the sono for support and to see the baby. I told the sono tech that I wanted to see her head, I needed to see it for myself. Dr. Loo confirmed our fears, he said it was classic case of anencephaly. The next thing out of his mouth was, "A common option is to terminate the pregnancy." We knew that termination was not an option.
Every life is precious and has meaning. God blessed us with this little life and we are determined to enjoy it and rejoice in His blessing. We are only now beginning to discover how meanful her life will be to us.


Ryan and I want to share the life of our precious daughter, Elspeth Allyson. We hope that her beautiful and short life will touch your heart in a similar way it has ours.

We only have about 19 more weeks to experience her in this life so we want take advantage of every moment by talking about her, talking to her, writing/blogging and creating memories.

Welcome! Please feel free to leave comments and ask questions about Elspeth. Her life is too precious to keep it to ourselves.