Hyrum's Story, by his Mama

A Life Well Lived, By Ashley Wiltbank

​I've heard many people say that the year they lost their child was the worst year of their lives. I refuse to make that true for me. 2016 has already been the best year of my life. A year I'll remember forever. It's the year I got to witness and hold a miracle. A gift directly from God. Proof that He is real, and that He loves me. In 2016, He gave me Hyrum.

Technically, our journey with Hyrum started in 2015. On December 7, 2015, when we were referred it a perinatalogist, after my OB saw fluid on our baby's brain and bright spots on his heart. Maybe I was oblivious or naïve, either way, we were not at all expecting the tech to turn to us and say that she "saw what your OB saw, and I see a lot of other issues too". She then went on to list nearly every major organ system and the problems she saw in each one. I don't think I really processed what it meant until after several hours of more testing, when the genetic counselor told us that our baby would most likely be stillborn, and that if he wasn't, the odds of him making it to his first birthday were less than 8%. She said if she were me, she would terminate the pregnancy.

Luckily, when we met the MFMS, he was much more positive. He didn't bring up termination, and although the prognosis for our sweet unborn baby was still grim, he encouraged us to make the most of our time with our son. We were introduced to a perinatal palliative care nurse, Berdette. She told us that our son's life was going to be brief, but that it was still within our power to make his life wonderful.

A friend brought us this picture by the artist Simon Dewey, not long after we got the diagnosis. We knew that Hyrum's place in our family had meaning and that God had a plan for him. And we knew most of all, as our daughter said, "Jesus is going to take care of our baby!" The title of the painting is "In His Constant Care". It brought us so much comfort.

It was undeniable that God was sending us a valiant, noble little spirit! We'd tossed around the idea of naming him Hyrum, and after finding out that it means "noble", "whiteness", "borrowed" and "my brother is exalted", we decided that that would be the perfect name for our kids to call their brother!

Some days during my pregnancy were SO hard. I was so discouraged, and so sad. But I'm so grateful that most of the days were actually pretty good! In taking Berdette's words to heart, we tried to make the most of our time with our son. Every day I got to wake up and feel him kicking felt like a gift from Heaven. We took time to get to know him. Our other three kids loved to feel him kick them! We would sing to him every night,

"Godspeed little man, sweet dreams little man, oh my love will fly to you each night on angel's wings, Godspeed, sweet dreams".  

I felt more confident, more loved when Hyrum was alive inside of me. I felt so honored to get to carry this beautiful little soul and have him literally be a part of me. I just knew he was so pure. Too pure for this earth. Strong impressions told me before I ever even saw him that he accepted this body and this short life, that his heart is not set on the vain things of this world. He's pure and perfect enough to serve his purpose without having to be physically with us.

I tried so hard to listen to the things I knew Hyrum was trying to teach me. I've never had such a sure knowledge of a loving Heavenly Father. I've never had such love for the people around me. I've never been more motivated to be a good person. I've never been so grateful to see the sunrise, sunset, blue sky, rainy days, cold days, bright days and dark days. I wanted to spend as much happy time as I could with my kids. I wanted Hyrum to hear his siblings and hear our happy voices and know he was part of a family who loved each other and loved him.

Some days I failed miserably. Some days fear and stress consumed me. But my noble little Hyrum motivated me to press forward. I wanted to make his life beautiful.

We felt like every person we met while I was pregnant with Hyrum, from our doctor to our photographer to the random stranger who paid for my prenatal vitamins at Safeway one day, was intricately placed in our path. I never knew such amazing, compassionate people existed, willing to do such grand acts of service for complete strangers. My husband made the comment that if Hyrum had lived, these would be the types of people he would associate with and bring into our lives. And even though his time was short, he still brought them to us!

I'd given birth three times before, and each birth experience was beautiful in its own way, but nothing could compare to the overwhelming feelings of love, peace and the presence of Heaven in the room when Hyrum was born. He didn't cry or move for several minutes after he came out, but I knew him immediately, and I loved him immediately. The second I saw his face was the first time on this journey that I ever experienced denial. I thought to myself, "They said something was going to be wrong with him. Lethally wrong. You can't hand me a baby this perfect and tell me he's not going to live!" He was perfect!

Sadly, my denial met reality just 3 1/2 hours later. Hyrum waited patiently for everyone to go home, then passed peacefully in my arms.

We were given everything we had hoped for his life. We were able to give him a name and a blessing. He was welcomed and loved by his siblings. His grandparents, aunts, uncles and cousins all came to meet him. We swaddled him and snuggled him and sang to him. He got a birthday cake and we got lots of pictures. But he continues to give us so much more than we ever could've imagined!

​

Everything that I felt when I was pregnant with Hyrum has come back ten fold now that he's passed on. I want to be a better person, and I'm throwing myself out of my comfort zone to try to be a person worthy to call herself Hyrum's mom. Every little thing reminds me of him and how I want to do everything I can to get back to him. I want to be a better mom, better wife, better friend. I want to be closer to God, and in doing so, I grow closer to Hyrum. I look for people's souls now. Not their mortal vessels. I know that's what Hyrum would do. That's what he's taught me to do. I want to share God's love, because that's what Hyrum did for me.

Just like when I was pregnant, some days I fail miserably. At times, he pain and the emptiness is more unbearable than I ever could have imagined. The dark days are darker, but the bright days are brighter, and even though it's been less than two months, there have been days that have been completely bright, with no darkness in sight.

Some people live their whole lives not knowing their purpose, without living for anyone else. Hyrum did that with three hours. He has shown me that life, and what you do with your life MATTERS! You don't have to make millions or cure cancer, sometimes the simplest things, the simplest beings change the world around them. We've had so many people tell us about how Hyrum has changed them too. I know that that is part of his purpose. As much as I sometimes want to have him to myself, I know he was meant to be shared and to touch others.

D&C 18:15 says, "And if it so be that you should labor all your days...and bring, save it be one soul unto me, how great shall be your joy with him in the kingdom of my Father!"

I know Hyrum is there! His life was short but he lived it for us, and especially for me. He labored through his short life to bring others to God. I know his joy is great and that he's waiting for me to do my part to meet him there. Hyrum has shown me my purpose. He's taught me that I can have everything I've ever wanted out of my life, and that the things I truly want are not the things of this world. I'm not perfect, but I'm progressing and the thought of holding Hyrum again someday pushes me every day.

I've just begun to open up a world and a part of myself that I never knew existed. I wish I could've learned these things another way, but I'm forever honored that Hyrum is the one who was willing to come teach me.

Godspeed Little Man! Sweet Dreams Little Man!

Jesse's Story, by his mama

Written by Diana Quinones

2015 was a hard year for me. I lost my father in January 2015, when he unfortunately lost his battle with cancer. However during that time I was watching him wither away, I discovered I was pregnant. This was my little glimmer of hope, something I was so happy about. As my father was lying on his death bed, I whispered into his ear, “Your going to be a grandfather again.” He opened his eyes, lifted his eyebrows whispered, “I love you.” 24 hours later he was gone.

All of my family members were ecstatic about our baby news. This was our peace during the storm of my father’s death. My husband and I were expecting our first baby! We couldn’t be any happier during the grief of my father leaving this earth. I had my first check up on February. I was indeed pregnant given the due date of September 18th, 2015.

Everything was going fine. Every appointment I heard the heartbeat, every appointment I looked forward to, just to see my baby grow. Until my last appoint in May. This is when my world came crashing down. My glimmer of hope was flickering.

My midwife came in with the results of my anatomy scan. I was about 22 weeks pregnant. She had a concerned look on her face. She told me they found an anomaly, and she wanted me to see the fetal specialist. I was experiencing this all on my own. In a different state from my family, but thankfully my in-laws lived in Los Angeles, two hours from San Diego where I was living at the time. I was to stay with them until we figured out what was happening with my baby. I think this was the most dreadful part of my journey, being poked and prodded by doctors as they figure out what is wrong with my baby. I finally got to see my fetal specialist; she began to do an ultrasound for me. She was quiet the entire time; taking pictures, stilling images, listening to his heartbeat. This had to have been the longest day of my life. She began showing me what she was looking at. My son had a neural tube defect, an encephalocele. His cerebellum was growing outside of his skull, the words, “not compatible with life after being born,” were mentioned, and they wondered if he would even survive the nine months inside of my womb. She also said his heart was not in the right place, I would need to see a fetal cardiologist, however what was concerning was the degree of his encephalocele.

We learned he would not survive. I was advised to terminate. However in the state of California termination after 24 weeks is not possible, so I had two weeks to figure out if I wanted to keep my baby or carry him to term, despite the prognosis. I had to tell my husband the sad news via email, as he was somewhere in the Pacific Ocean. He was devastated. I then saw the fetal cardiologist. Even more bad news, my baby had a diaphramic hernia, he was also diagnosed with DORV (Double Outlet Right Ventricle). Which basically meant his little body would have to undergo tons of heart surgeries right after birth. However, his cardiologist said he wouldn’t even be able to undergo surgery with the severity of his encephalocele. It was just one horrible diagnosis. One right after the other.

Our families were devastated. My mother had a peace and calm reaction. She is such a strong woman of God. She had the most calming words to me. She said, “Everything is God’s will, you are a woman of faith! You know in your heart you cannot terminate this pregnancy. If he survives, he survives, and if he goes to heaven, you will see him again someday. He has his grandpa with him.”
My husband and I decided I would carry to term, despite the prognosis. I would stay with my in-laws until September; my husband would be home at that time anyways. We prayed for a miracle.

Those four months were the happiest and saddest times of my life. My baby grew inside of me. He kicked and moved. Whenever I wouldn’t feel him, I would be scared. “Is he gone?” “Did he die inside of me?” But then he would punch or kick me, letting me know, “No-mama, I am still her.” I could then breathe again. My belly got bigger, he measure smaller than normal due to his neural tube defect.

My family came to visit me, we had full days on the beach with my baby inside of me. We were enjoying our time with him, no matter what the doctors said.

Doctors ran all sorts of genetic testing. However everything came back normal, this wasn’t a genetic disorder; they said it was a “strike of lightening.” Why did God choose me for this “strike?” “What did I do to have my baby this way?” I am still asking these questions to this day.

September rolled along; my husband flew back to California to be with me; to be my rock during the birth of our son. I was to be induced. I was in labor for about 48 hours. My son came at 10:30 at night on September 5th, 2015. He was born not breathing. It was a stillbirth. They swaddled him. I got to hold him, everyone in my family held him, and what broke my heart the most was seeing the tears in my husband’s eyes. The heartbreak. Here he was saying hello and goodbye to his little boy. Our son.

I held him tight, exploring every little piece of his body, drinking him in. I didn’t want to forget any inch of him. He had his father’s cheeks, a head full of curly black hair, his appearance looked so peaceful. To me there wasn’t any bit of defect; his was perfect in my eyes. He was mine. I think September 5th will always be a day of happiness and sadness for me. It is a day that will forever be in my heart. The day I died, and the day that I also came alive.

My husband and I decided we would live for our son. Live life for the life he was denied. Every step we would take would be for him. I now know why God gave this to me, so I could be a voice and inspiration to women who are going through the same thing. To choose life! Not terminate it. Give your baby a fighting chance, despite what the doctors say. We now are in Japan and we are taking every bit of it in. Exploring its wonders. Letting the world know, Jesse Alberto was here! He may not be on this earth, but he is here! We are living through him. Don’t get me wrong, there are days where all I want to do is curl up a weep. Feel sorry for myself. I look at mothers with their babies, and wonder why that could not have been me. But who am I to question God’s will? I still have life and everyday I pray that he blesses us with a rainbow baby but until then my husband and I have been closer than we have every been, we hold each other’s hands in this pathway through grief. We smile, we cry, we laugh, we pray, but most of all we live. Living for our son, living for Jesse Alberto Castillo.

~ ~ ~

Diana Quinones is an educator, and wife to her wonderful husband. They are presently living in Japan enjoying life to the fullest.

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Phoebe's Story, by her Mama

By Misty Jassey - Knowing Phoebe Ann

When I found out that I was expecting another baby, I was not flooded with happiness. We were in the end stages of building our house and facing another major move and we were not hiding our stress well. But, after my eyes went big and my shoulders fell, I remember smiling. Because, even in what seemed like the worst timing, my heart couldn’t help but be happy. I mean, it was a baby! What better thing could I fill up a new house with than a new baby? Nothing. 
So, we shared our joyful news and quickly planned to kick Troy out of the new office he hadn’t even had the chance to move into. But, as you know, our plans had to change. May 21st of this year, we found out that God did not have the same plans that we did and we had to lay them down. We were told that our daughter had a condition, anencephaly, and that her life could not be sustained outside of my body. 

In our fog of shock and grief, we heard the word "terminate" and together we firmly said, "NO". She was alive. She was our daughter. Above all, she was a creation and image bearer of Almighty God. We were completely devastated and completely honored to be chosen to protect her life, however long it might be. So, we made new plans. Now, we held them more loosely, but we made plans to hold Phoebe when she was born and we prayed expectantly, hoping that we could spend time with her alive on this earth. In fact, I changed the way I prayed to God. I still prayed for His will to be done in our lives and with sweet Phoebe. But, God knew my heart wanted more and I asked for it.

I asked to hear her make a noise. I asked to see her grasp her brother’s hand. I asked that Amelia could get her to suck her finger. I asked for more. I felt good about it and I didn’t see why God wouldn’t grant me these things. 
In the midst of celebrating her life and feeling her move, I kind of forgot that my plan might be different than God’s plan. On August 15th, God let me know, with a quiet stillness I hadn’t felt in months, that He heard me and still had chosen His way over my way. Nothing we ever wanted or ever planned was left before us. 

On August 25th, Phoebe Ann was born. And she was wonderful. It was 10 days between the time she passed and I gave birth to her body. Long story short, we chose a more natural induction method to keep our birth and burial plans in place. My body wanted so 
badly to do its job of keeping my baby where she should have been. There was much convincing that had to be done to change that and the wait was yet another trial. 

Phoebe's precious little body showed the signs of her being gone for many days. We never really saw her as she was. Seeing her, empty of all signs of life and seeing her with many signs of death in its place, was indescribable. After careful dressing her, we allowed her brother and sisters and then other family to see her. Her siblings thought she was the most beautiful baby doll they had ever seen and fought for turns to hold her. There was so much joy and so much grief together in the same place. It was not our time. It was not our plan. It was absolutely not our prayer. 
I read a beautiful book written by another mother, who also carried her baby with a fatal birth defect. She likened losing her daughter to Mary Magdalene, who broke the bottle of expensive perfume to anoint Jesus’ feet. She wrote that, “This offering was always meant to fall from your hands.”. I believe that. Phoebe Ann was never intended for me or Troy to keep. The way her body was formed was all in God’s design, in His plan for her and for us. He didn’t have His back turned and miss something. If I wanted to blame someone in this great tragedy of loss, I could blame Him. I have blamed Him. But, I also trust Him. I trust that no matter how good my plan seems, no matter how holy, His plan for us is better. I trust that no matter how right my way seems, His way is always leading to a more beautiful place. 
I would liken this experience much more closely to the scripture that tells us to take up our cross and follow Christ. But at every turn, He has asked us to lay down our arm loads of plans and desires to take up our cross and follow Him. Somehow, we gather more plans and desires along the way that are not always His own. And again, He asks us to lay them down, get a better grip and keep following. That sounds so inviting, right?
One thing I asked God for when we found out Phoebe’s diagnosis was for joy. It seemed so impossible then. But, I can honestly look back and see hundreds of joys. - People being the hands and feet of Jesus - The church being the church - Friends and family surrounding us with love - Growing closer to my children - Sharing with others who have lost and grieving with them - People taking our names and Phoebe’s name before the throne of an Almighty God in prayer (That always takes my breath.) - Feeling and knowing my precious girl as she grew - Feeling the presence of the Holy Spirit when we needed it most - Knowing His love in a whole new way
All joy.
But, the greatest joy I now have is the joy of the hope that is in me. The joy of knowing my Savior has prepared a place for me, a place for our Phoebe Ann, more beautiful, more wonderful, more glorious than any place I could give her on this earth. She is more loved, more whole, more perfect than we could have ever made her. My dream for my children is not happiness on this earth, but joy found in an eternity spent with Jesus and Phoebe is already there!
Why God chose me as the one person on this planet to know Phoebe Ann better than anyone ever could, I do not know. But, it is my greatest honor and I will forever be grateful.

Tessie and Noah's Story, by their Mama

written by Kim Jackson

In the beginning of 2013, I decided that I wanted kids and I was done waiting for "Mr Right". I am a pediatrician and was so ready to have a baby. I went through IUI with donor sperm and amazingly got pregnant on the first cycle. I could not believe it. The pregnancy hormone numbers were not doubling as they should and the doctors were concerned that I would lose the pregnancy. Somehow even at that point I knew it was twins. I had an ultrasound at 4 weeks, and they said everything looked great with my 1 baby, and I should come back in 3 weeks for another us to make sure everything was good given the hormone levels. I believed them that there was one baby for about 2 days, then the feeling crept back in that there really were 2 babies in there.  

At 7 weeks the tech said "Oh my gosh, there are two heartbeats!"  I responded, "I knew it." She was so taken aback! I was ecstatic, wanted to run right out and buy 2 of everything. I was a little scared of how I was gonna manage being a single mom to two babies, but the excitement far outweighed the fear. I had 5 blissful weeks to plan for and dream about being a mom to twins before the rug got pulled out from under me. 

I will say that like knowing there were two, I had a feeling that something was wrong as well. Every week between 7 and 12 weeks when I saw my OB my heart was in my throat until they said they were both doing well. 7/31/13 I went to a dating/nuchal fold ultrasound. The tech seemed really annoyed that my bladder wasn't full enough. She said she couldn't get a good look at one of the babies because of that. She left and the Maternal Fetal Medicine doctor came in. He took a brief look at both the babies and then told me that baby b was perfect, but baby a had anencephaly and would not survive. He said it with so little compassion that I thought he was joking at first.  He suggested selective reduction, and continuing the pregnancy as a singleton pregnancy.

My world shattered. I was broken, I puked in the parking lot. Somehow I got myself home and into bed. I spent the next 2-3 days curled in a ball in my bed sobbing. I am ashamed to say that I felt like I was carrying a dead baby. Luckily I have the best OB in the world and at my next appointment she made me look at the ultrasound screen,  saying, "They are both still your babies". One look at them play together and I fell in love all over again. My baby was perfect, even if she wasn't. 

I spent the rest of my pregnancy treasuring every movement, and two babies can make a lot of movement! I eventually found out A was a girl who I named Theresa Mackenzie ( though have always called her Tessie) and my healthy B was a boy who I named Noah Matthew. Noah was up top and Tess was on the bottom. Every ultrasound I saw them kicking and punching each other. I had many many ultrasounds, and unfortunately because Tess had anencephaly, the techs tended to do a quick check of her heartbeat and then ignore her. That broke my heart every time. It took me a while to speak up and tell them that that was not ok. This was the only time I would have with her. I needed to see her. I needed pictures of her. I knew the pictures wouldn't look "normal", I didn't care. 

I met some wonderful people through perinatal bereavement and hospice who helped me make memories I could keep forever. I recorded both of their heartbeats from an ultrasound (I was terrified I might lose Noah too). I bought her outfits I wanted to put her in. I had a shower with gifts for Noah and books to donate to the clinic I work at for Tessie. I made plans for a friend of mine who is a photographer to come take pictures of her, and for her to be baptized by a priest who is a family friend as soon as she was born. My cousin made both of them beautiful preemie sized christening outfits. 

At my 35 week ultrasound they noticed that Noah's growth had slowed a little and plans were made for elective cesarean section for the next week. The day finally came to meet my babies! On 1/13/13 at 1044 and 1045 they were born. Tessie was delivered first, and cried immediately. When they brought her to me she was an awful shade of gray and I didn't think she would last long so I asked them to get her ready and get her baptized right away. Noah was delivered and was perfect, though slightly cold. 

I got to the recovery room and they had waited for me to baptize him. Tessie looked so much better. 

She was pink and crying and hungry!!  The little baby who the specialist had told me would do nothing nursed immediately and knew just what to do (better than her healthy brother). I had friends and family there and after she ate we passed her around. I wanted as many people to hold her as possible. I wanted people to know her.

That night when it was quiet my sister stayed with me. We took turns holding her through the night. At 1130 my sister woke me terrified because Tess was blue. I held my baby and kissed her and begged her to fight a little longer. I didn't want their birthday to be the day I said goodbye. My little fighter was awesome. Within a few minutes she was breathing comfortably again and back to pink. The next day more people came to meet her. I held her and Noah together as much as I could. She was never put down. She had three more of the apneic spells. At about 530 pm my little girl peacefully took her last breath. I held her and Noah and cried. I thanked her over and over for fighting as hard as she could. It killed me for them to take her away 4 hrs later.  

I had 2 more days in the hospital, and spent them holding on to Noah. Struggling to breastfeed him and crying. I brought him home and it felt so wrong to only have one baby. Two days later Noah ended up back in in the NICU for jaundice and r/o sepsis. I was a mess. I felt like I might lose him too (though in my rational brain I knew he was not that sick).  He was in for a week, in the middle of which I had to go pick up Tessie's ashes. People kept asking when I was going to do Tessie's memorial. I could not handle it at that time. 6 months later I finally did and it was perfect. It was a celebration. It was not sad. There were still so many people who cared about her. 

After the memorial life settled into a new normal. I miss my girl everyday, but I am able to function most days. Some days the absence of her nearly knocks me over. Noah lights up my world, he learns something new nearly everyday. Sometimes those milestones are a giant reminder that he should have his sister here to do it with him. I hate that he won't have his playmate to grow, learn, fight and get in trouble with. 

Noah and Tessie turned one in January. Tess was included in his birthday celebration. It was a happy day, though my heart broke a little when we were singing happy birthday and I whispered her name to myself. I am working to balance grieving Tess and loving Noah. Noah will always know his sister existed and was loved. His third clear word was "Tess" and his snugly is the monkey with Tessie's heart beat in it. His face erupts into the best smile every time he hears her heart beat! I don't ever want him to believe that he is not enough though. He is amazing and smart and at 15 months so sweet and caring. I still believe that part of Tessie's reason for existence was to make sure Noah got here safe and sound, and she continues to watch over him even now. 

(Noah at his birthday my wonderful photographer friend added in the butterfly to represent Tess).

Tess has changed me. I have done things I never thought possible. I collected more than 300 books to donate in her name. I have given another loss mama the gift of beautiful pictures of her sweet angel. I have become a poet. My biggest accomplishment is that I have written a children's book about Tess and Noah, and a good friend of mine did the illustrations. It's called Two Little Monkeys.  

She will never be forgotten. Not if I can help it!

Emily's Story, by her Mama

written by Brittany Thomas

I found out I was pregnant with our second child on July 7, 2014. It wasn’t really a shock for my husband and me, because I had no problems getting pregnant with our son a month after stopping my birth control. I was already considered high risk because I had pre-eclampsia with my son. So I was going to regular appointments. At first we thought I was having a routine pregnancy. At every ultrasound, the baby was growing as it should have been. 

At sixteen weeks, we found out it was a little girl, our little Emily Claire! I was over the moon excited. However, the happiness was short lived. 

The maternal AFP signaled that I was high risk for Trisomy 18. My world stopped turning when I heard my ob say the words “incompatible with life”. However, I had already decided that I would continue on with the pregnancy. I remember saying to my husband “terminating the pregnancy wasn’t an option. She didn’t choose this. She was handed this deck of cards. She deserves every chance in the world to fight”. Further testing was done and it said the first test was wrong and she did not have Trisomy 18. My excitement came back!

At eighteen weeks, we thought everything was fine with her anatomy scan. The ultrasound tech seemed to be having a hard time finding all of the chambers of her heart. I didn’t think anything of it. My ob’s office does transvaginal ultrasounds to check the cervix and she chose to check the heart this way. She told me that we could check again at the next ultrasound. I went on my way came back for the next ultrasound. She didn’t say anything and I thought it was fine.

At twenty-nine weeks, I had my first non-stress test. She was non-reactive. The ultrasound tech told me that was due to her being so small. Since the test was non-reactive, I would have my first biophysical profile done. The tech that did this, kept having me get up and move around trying to get Emily to move around. She didn’t tell me at first what she was looking for. After the third time of getting up and walking around, she told me she was having a hard time visualizing all four chambers of her heart. All of the previous images she had taken had already been sent to the doctor. She left the room to go talk to the maternal fetal medicine specialist. After what seemed like an eternity the doctor entered the room.

He came in and told me that my daughter had a rare congenital heart defect called hypoplastic left heart syndrome (HLHS). He said that he didn’t know if it could be fixed but it was very serious. He also told me that she had fluid around her abdomen. I also had very high levels of amniotic fluid. He referred me to Cincinnati Children’s Hospital and University of Cincinnati Medical Center for further testing and care. From twenty-nine weeks to delivery, I practically lived at my home ob’s office and in Cincinnati.

At my first appointment in Cincinnati, more problems were discovered. At my first ultrasound, they found a congenital diaphragmatic hernia (CDH). The fear with this was that her stomach, liver, and intestines had encroached on her lungs and they weren’t fully developed. At this appointment we also compounded gestational diabetes on top of it. The maternal fetal medicine specialist wanted a fetal MRI done to get a better look at her heart, lungs, and diaphragm. Well this was an issue for me because I’m claustrophobic. But I knew it had to be done for my little girl.

After all the testing was said and done, we got the final diagnosis. HLHS, CDH, esophageal-trachea fistula, and possible scoliosis. But we were under the impression that what was wrong could be fixed. The hernia wasn’t a true hole, only weakened. This was good, because her lungs were able to fully develop. At this appointment, I was given the news that I would have to relocate to Cincinnati at thirty-six weeks in case I went into labor or something was wrong with her. During the intervening weeks, I went to appointment after appointment after appointment. 

With the proper diabetes medication, my fluid and her fluid were under control. She was also growing beautifully. There would be weeks where she wouldn’t cooperate for non-stress tests, but she always passed the biophysical profiles. When we relocated to Cincinnati, things would change. At her first non-stress test, she was non-reactive. No big deal. I had been there done that. But the tech was having problems getting her to move. My test took the entire half hour but she passed. At the next biophysical profile, she wasn’t reacting the way they wanted her too. She wasn’t moving and her heartrate was staying at a constant 150 bpm. The maternal fetal medicine specialist came in and told me and my mother that we would be having a baby that day, most likely within the hour. I begged them to wait so my husband could make it, but that wasn’t the case.

I was transported to labor and delivery, and from there everything happened so fast. I was changed, cleaned, IV placed, consents signed, and wheeled into the delivery room within fifteen minutes. I would go into surgery by myself. My mother was taking care of my son so she couldn’t be in there with me. Everyone was in high gear to get my spinal block in and Emily out. 

I remember them telling me to turn my head and look because she was out and they were taking her into another room. I kind of had a gut feeling then that something was wrong, she never cried. After what seemed like an eternity, I asked if anyone knew anything about my daughter. The nurse anesthetist went and checked and she came back and said all she could see was they had a breathing tube in her. There were too many people for her to see. 

A doctor came in a few minutes later, crying, and told me they weren’t able to save my daughter. They put a breathing tube in her, went to give her adrenaline to jump start her heart, and it came back out her mouth. Her heart never beat. After they cut the umbilical cord, she wasn’t able to survive on her own. She kept apologizing, but there was nothing that could be done. 

By the time I was wheeled out of the operating room, she was bathed and dressed and waiting for me to see her. I couldn’t do it until my husband got there. They allowed my mother and son to come back to my own recovery room and her face was blood red from crying. When my husband and father arrived, I finally asked them to bring my daughter in. She was absolutely beautiful. I never got to see her eyes, but she had a full head of brown hair.

My family and I would spend the next day and a half with her. She was changed into an outfit that I loved and a bow that was too big for her head. But she was absolutely perfect. We would hold her, cuddle her, rock her, and just bond with her.

The day I was discharged was the hardest. A geneticist would come in and tell me, just by looking at her, that my perfect daughter wasn’t perfect. He started listing off things wrong with my beautiful angel. Her eyes were too far apart, the bridge of her nose was too wide and flat, her fingers weren’t formed right, she didn’t have enough fingernails. The list went on and on. It was like putting a knife in my heart. He told me what testing would be done and how long it would take. After he left, I told my nurse I was ready to go home.

One of the hardest things I have ever done would be soon to follow. I had to change her into the typical hospital garb; the newborn beanie, white long sleeve shirt, diaper, and blanket, lay her in the bassinet, and leave her there. Never to see her in natural physical form again.

As of right now, we still aren’t sure what her cause of death was, other than the HLHS. I am hoping that we will be getting the results of the autopsy and genetic testing back soon. But no matter what they tell me, she will always be my perfect little girl. I wouldn’t have ended her life for any reason. She was alive inside of me. I will always treasure those little kicks and wiggles.

Fly high Emily Claire! You are loved and missed more than you will ever know.

Lily's Story, by Her Mama

by Kellie Soper

Fear, excitement, anxiety, joy...all these mixed up emotions and so many more when I learned I was pregnant with my second child. 

The fear and anxiety came from worrying it was too soon and would be too much to handle. My son was only 10 months old when I found out I was pregnant. An 18 month old and a newborn?! The excitement and joy came from always wanting a big family and always wanting kids close in age. 

I was so happy to be giving my son a sibling! I had dreams and visions of them being the best of friends growing up. Sharing a room, sharing toys, sharing memories. My heart was so full when ever I thought of their future together.

 My husband and I drove to our 18 week ultrasound. He had taken the afternoon off and we were excited to see our baby and have a lunch date after the appointment. 

They did all the routine measurements, at least it seemed routine. I saw a perfect beating heart, ten fingers and ten toes. It didn't phase me at all that we still hadn't seen our sweet baby's profile when the tech stepped out of the room.

The doctor came in and I was still oblivious...all I remember was that perfectly beating four chamber heart. It was the first time I learned a strong heartbeat wouldn't be enough. The doctor said the very words that left me gasping for breath:

"Your baby has a condition known as Anencephaly."

I couldn't breathe. Unfortunately, I already knew what this meant for my child. It meant that even though she had a perfect beating heart, the baby would not live long after birth (if she was born alive at all). You see, even though my baby's heart was perfect, the brain and skull had not formed properly. My child was missing much of her brain and skull.

My husband put his face in his hands and started weeping. Without looking at him, I asked the doctor to tell us what we were having (we had not planned on finding out).

"You are having a girl."

And then I wept. I was having a daughter, the little girl my heart had always longed for, only I wouldn't get to keep her.

After she let me take it all in for a few minutes, she lovingly put her hand on my arm and said, "We can discuss your..."

I stopped her immediately knowing the word that was going to come next..."options". She was going to refer to my daughter as an option. She wasn't an option, she was mine. For better or worse, she was mine.

My reply, "No, we don't have options. We will keep her." She understood and didn't say anything else. I was grateful for that. In that moment of brokenness and despair I didn't have the energy to defend our "option".

I'd like to say from that moment on I was brave and strong and never questioned anything. But the truth is this, I went home, cried to my God, and begged him to not make me go through this. I begged him to just take her then and not make me go through the next several months. There is nothing brave or strong about that.

The truth is I was terrified. I had no idea how I would endure the next five months, let alone endure painful labor, contractions and pushing a baby out? How on earth could anyone knowingly survive that?

I know the answer now...grace. It's all grace. And it comes from a place deep down inside of you that you never knew existed. 

And that grace carries you through pregnancy. It guides you through labor. It helps you see your beautiful and perfectly made daughter, even though she has a fatal defect. It comforts you when you hold her lifeless body for the last time and it wraps itself around you as you get your last glimpses of her in this life. 

Most importantly, that grace warms your heart with memories that you will cherish forever. And those memories will carry you through the moments of your greatest despair when you miss your child the most.

I can still feel her squishy cheeks on my lips. I can look at my finger and still see her precious hand wrapped perfect around mine. And those chunky thighs that had two extra weeks to fatten up. I close my eyes and I can still see the smile through tears my husband had when holding his little girl.

It hurts. It hurts in ways I never imagined, but I wouldn't have it any other way. I can't imagine the grief if I never had these precious moments to cling to.

Being her mom is the greatest gift God has ever given me. She has taught me to love more deeply. She has taught me what real, unconditional, and selfless love is. She has made me a better wife, mom, sister, and friend. 

I miss her. I miss her every single minute of every single day. I would have done anything to save, but at the same time, I wouldn't trade her for anything in the world. 

And she is worth it, every second, every minute, every hour of every day. She is worth it. She is not an option, she is my daughter. 

She is mine.

My perfect Lily Frances was born sleeping on November 12, 2014. I carried her 42 weeks and 2 wonderful days. You can read more about our journey at www.ladysoper.blogspot.com

~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have two beautiful children, one on earth and one sweet, perfect soul in Heaven. Ted is a wild, silly, and rambunctious toddler. Their sweet Lily Frances was born sleeping on November 12, 2014. They learned at their 18 week ultrasound that Lily had a fatal neural tubal defect the doctors said was "incompatible with life." Kellie and Jason both knew Lily was not a "decision", but their precious daughter and they believe her life was of value, no matter what. She carried Lily with love for 42 weeks and 2 days. They miss her every single day, but are grateful for the honor and privilege of being her parents. You can read more about their family on Kellie's blog, Life and Love.

Nathanael's Story, by His Daddy

by Steve Wickham

We Knew it Wasn't Up to Us to Terminate.

As we paused to silently share some photographs we innocuously took that fateful morning—now nine months on, the tragedy done; our son, passed—there was a sense of the surreal, yes even now. We expect that we will never really know why this happened to us, and yet we are often told we were ‘chosen’. That doesn't sit very comfortably, I can tell you. Yet, people are only trying to help.

My wife, Sarah, and I took our then 15-month-old son with us to the Ultrasound rooms. It was July 1, 2014. A day none of us will forget. Another thing we will never forget is Ethan’s concern for his Mum and Dad as we cried on our way home. It was another eighteen days before we would find out our baby’s plight—amniocentesis confirming Pallister-Killian Syndrome (PKS), an incredibly rare condition affecting the 12th chromosome.

We were told at that early stage that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it wasn't our place to terminate spoke loudly, yet, respectfully they didn't say a word. They honoured what was the only thing we could do. We were praying for a miracle. So many people joined us praying that God might contort the formation of our little one’s internal organs, just so the lungs had room to develop. We had faith that anything could happen, and our role was to simply be faithful to our little life inside Sarah.

During the four months between diagnosis and Nathanael’s eventual stillbirth, we took many opportunities to take him out, to enjoy his movements inside the womb, to get to know our little boy. We treasured every memory we our imaginations could create. Our obstetrician nicknamed him a “cheeky little fellow” as he would often move suddenly during the eight amnioreduction procedures Sarah had—two litres of amniotic fluid were drained each week. Nathanael had lots of character!

When the time finally came for Nathanael to be born, our one and only hope was to meet him alive. Our expectation was that he would pass away quickly in Sarah’s arms. We were devastated when he passed away due to cord prolapse because of shoulder presentation during induction. We had grieved our loss well up until this point. The day after Nathanael was born, Heartfelt came in and took precious photographs for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until we said goodbye, finally, on November 7th.

We knew it wasn’t up to us to terminate. We felt an instant confirmation of this. We never doubted our decision. We received much peace, a peace that we cannot understand, I think, because we were resolute in the first instant. We stepped into our reality afresh each day and we were given the moment’s joy, procured by a very simple bravery to do what only we could do. Does any parent do anything less for their child?

Now we know that the experience we suffered is not just for us, but also for others, just as others’ experience sometimes give us encouragement. We have such a warmth in our hearts now for those who have lost a baby. We are connected through pain, and yet we are connected as sister and brother.

Nathanael will live on in our memory, forever!