Practical Information for Parents Coping With Late Pregnancy and Infant Loss
When I was pregnant with my third child, I had a feeling that something was very different. The twenty week ultrasound confirmed my fears when our sweet baby was diagnosed with renal agenesis (Potter’s Syndrome), and we were told that she would either be stillborn or live for only a very short time after birth. Elizabeth Jane slipped quietly into the world at 31 ½ weeks gestation and graced us with three wonderful hours of life. Those weeks between the diagnosis and her birth were an emotional roller coaster, and full of difficult decisions. We wished that there were some sort of a handbook to tell us how to prepare for her birth and death. I wrote this pamphlet to honor the life of my daughter, in hopes that this information will make the path easier for other couples facing the loss of their baby.
Whether you are carrying a baby who has just been diagnosed with a fatal or potentially fatal defect, or have been told that your baby has already passed away, there are things you can do to prepare for the birth to help you and your partner come out of it more emotionally and physically intact. You are not alone in this. Many others have gone before you. This brochure is a compilation of medical facts as well as the wisdom gained from the experiences of many.
Elizabeth Jane Vawdrey*Click here to launch Video of Elizabeth*
Elizabeth Jane – Our angel for three hours and forever
January 4, 2006
I began to feel more and more strongly that things were different with the pregnancy. By the time we got to our ultrasound appointment in mid-October I was quite concerned for the well being of our baby. The tech came in first to do basic measurements. As soon as she put the probe on my belly I could see that something was very wrong. There was no dark space anywhere around the baby, which would have indicated amniotic fluid. The tech asked me a few times if I’d had any leaks, which I hadn’t. She looked very anxious as she left to go get the doctor. The doctor took a good look at things and then delivered the devastating news that our baby appeared to have no kidneys, known as Potter’s Syndrome or renal agenesis, and that this condition is incompatible with life. The lack of fluid made imaging very difficult and neither he nor the tech were able to tell us whether our baby was a boy or a girl.
Those few days right after the diagnosis were so painful. My OB was out of town, and we weren’t able to see him until Monday, five days after the initial diagnosis. By that time, after much prayer and careful consideration, we were able to come to the decision that I would carry our baby as long as possible unless my health became seriously jeopardized. My OB was very supportive of our decision, and asked us to come in weekly so that he could make sure that we were still doing all right.
Those next few weeks felt like a bad dream. Like maybe it was all a mistake and they were talking about a different baby or maybe the machine was faulty. About a month after the initial ultrasound, we both needed to see our baby again and confirm the diagnosis for our peace of mind. At that visit, the doctor noticed that the organs were on the opposite side (situs inversus), and the baby seemed to be doing very poorly – deep heart rate decelerations and poor growth in addition to still seeing no measurable pockets of fluid. We came out of that appointment saddened and thinking that surely our baby would be stillborn sometime soon. We started to make preparations, including purchasing burial plots and funeral home arrangements, and I worked on a tiny blanket. We still didn’t know the gender, so I had the kids, Ethan (4 ½) and Rachel (2), help me choose bright fun colors that could go for either a boy or a girl.
Each morning I would wake up and lay very still until I felt a little bump or nudge letting me know that my baby was still alive. Sometimes it took up to an hour. It was stressful. We looked in to purchasing a Doppler, and were able to find one for a reasonable price. The kids enjoyed “hearing the baby”, and it brought me a lot of peace of mind to be able to listen for a heartbeat when I hadn’t felt any movement for a while.
Around 28 weeks I started to have quite a few contractions. I have a strong history of preterm labor, so it wasn’t surprising. I began to feel a sense of urgency about getting things really in order for the birth, and got in contact with a photographer who donates her services for infant bereavement. I also sought out information about how the hospital would handle the birth and what kind of services they would provide to us. I finally purchased clothes to bring to the hospital. I wrote up a birth plan that specified our resuscitation preferences and other things that were important to us. I was also able to speak with another mom who had a baby with Potter’s Syndrome who was able to put my mind at ease about the delivery and was able to answer questions that no one else could. The baby was in a transverse position and had been for several weeks, so I was worried about facing a c-section among other things.
At 31 weeks I began to show some signs of impending labor and since she still felt transverse to me, we went to labor and delivery for an evaluation. The contractions slowed, but an ultrasound showed that she was indeed still transverse. Three days later, the contractions hit hard as I woke up in the morning. I stayed home the whole day, but when I started bleeding around 8 p.m. I knew it was time to go to the hospital. We were blessed with a very kind nurse when we checked in. Another ultrasound confirmed that the baby was still transverse, and the monitors showed that I was indeed in labor. I labored through the night but made very slow progress. My OB came in the morning to evaluate me and we discussed pitocin, but I was unable to have it because of the baby’s position. I finally got an epidural around 8 a.m. because I needed to rest, and it looked like I was headed toward a c-section if things didn’t progress and she stayed transverse. The nurse checked me around 10:30 and I was only at a 4. The good news was that the baby was tolerating labor fine. I said a little prayer to myself after she left that the baby would shift and things would happen soon. At 11:30 I was suddenly really feeling things despite the epidural. The anesthesiologist came in to give me a big dose of pain medicine in case of a c-section, then an OB that was on the floor came to check me while my doctor was on his way. Much to my relief, he felt a little bum. We waited for a few more minutes until my OB arrived and the room got set up.
Less than five minutes after I started pushing, our sweet little girl made her backwards arrival into the world, very much alive! The respiratory therapists gave her a few breaths with the bag valve mask resuscitator, then handed her to me. I cannot describe the euphoria and sweet spirit that overwhelmed me when I saw her beautiful little face. Such a tiny, perfect little human being, all 2 pounds 14 ounces of her. It was hard to believe that things were so messed up on the inside given her cuteness. Her only visible physical quirk was a funny ear. Within the first few minutes we blessed her with her name according to our religious beliefs, which was a very spiritual experience. We chose Elizabeth Jane because of the meanings: consecrated to God, and God is gracious.
She only took a few gasping breaths at first, but with blow by oxygen and gentle stimulation, her breathing gradually picked up and her color improved. After a few more minutes, she peeked open one eye, and then the other. Each little sound, every little movement felt like such a blessing. I couldn’t believe she was doing so well! After about 45 minutes Grandma and Grandpa arrived with Ethan and Rachel. Ethan didn’t know what to make of it all and was a little bit reserved. Rachel was so curious and had no qualms about poking and prodding. We bathed her together and got her all dressed up in her tiny outfit. She even cried a bit during the bath, and waved her little arms.
The kids were getting tired and antsy, so Grandma and Grandpa took them home after about an hour and Alan and I were left to treasure our baby in peace and quiet. It became obvious that she was getting tired. Her breathing grew more labored and slow, and her little eyelids drooped. She took her last breath just over 3 hours after her first. We wept together and cradled her little body, elated that we were given such a precious gift of time with her but so sad to see it come to an end.
The hospital bereavement specialist came in and took some pictures, did casts of the hands and feet, and gathered other little keepsakes together for us. We kept her in the room with us until the mortician arrived, a good friend of the family. We got through a fairly restless night and asked to be discharged right away in the morning.
On the way home we stopped to purchase an outfit for her to be buried in because I wanted to keep the outfit she wore while she was alive. The next few days were a blur of activity as family came into town and we prepared for the funeral. My milk came in the day we buried her, which was acutely painful physically and emotionally. We went down to the funeral home together to see her, and I just had to hold her one last time. She looked just like a little doll – so beautiful. The hardest thing I’ve ever done was to close the lid of her coffin. We held a little graveside service for Elizabeth. It was an overcast day, but the sun managed to break through the clouds for the duration of the funeral. It just seemed right.
We miss our baby every day. She is such a special part of our family. She brought with her a spirit more amazing than I can describe. We feel privileged to be her parents and look forward to being reunited with her again.
Candace Naomi Carroll
Our Forever Child
February 13, 2007
We decided as a family to celebrate every day we had with this precious baby. Over the next 30 weeks we prepared for the arrival of this little one, while enjoying every flutter, twist, hiccough, and kick. My husband and I drove to different cemeteries in the area, wanting to find a good resting place for our baby before the time came. We counted down the days to find out the gender. On September 7, 2006 we found out that our baby was a girl. Everything was formed perfectly on her. The doctors had been concerned about the possibility of a cleft palate, club feet, missing digits, or internal organ problems as this can sometimes appears in anencephalic babies, but she was perfect from the tip of her toes up to her eyebrows. We decided to send out birth announcements at this time announcing the “upcoming” arrival of our baby and revealing her gender and her name to friends and family. We didn’t want to send out announcements after her birth and have to tell of her death as well. We wanted this to be something happy for people to read and to feel the joy of the journey with us. The announcement read:
Jon and Krista Carroll
Candace Naomi Carroll
with an expected due date of
Candace has been diagnosed with anencephaly, which is
We chose Candace for her name because of its meaning. Candace means: flowing white, pure. Her middle name is a Bible name that we love.
Throughout the pregnancy I was working on quilts and two burial dresses. They were two different sizes, but identical. This way she could be buried in one and I could keep the other one as memorabilia. I made other clothes and lots of hats for her as well. I made a quilt to wrap her in, and throughout the pregnancy had any friends and family that wanted to take a turn putting in stitches of love around the hearts on the quilt do so. I also made matching smaller size lap quilts for each of my children, for them to remember Candace by. I bought a small little stuffed bunny for Candace to be buried with, and bought extra for my children and my husband and I to keep.
We received special permission to have our ultrasounds recorded onto a videotape. I had a lot of ultrasounds because they wanted to keep an eye on the amniotic fluid level, which can increase rapidly with this condition and cause problems for me. The technicians were always so sweet and printed lots of pictures off. We even got to use the newer 3D machines and see some great pictures of our baby girl. Our extended family rallied together and we planted commemorative trees in a local park in Candace’s honor. Poems and songs were written. I kept a journal for Candace from the start of my pregnancy, which I continue for her now. I wrote it in a letter format to my baby girl, as if she would someday read it. I noted every appointment, every kick, every miracle she was a part of (and there were many), every impression that came into my mind and heart. I couldn’t deny the gratitude I felt from my baby for giving her a chance at life, for giving her the opportunity to experience her body, however long or short that might be.
As my due date got closer I made arrangements with a photographer to be at the hospital to catch every moment we had with her. I assigned a friend to the video camera for the same purpose. I had a birth plan given to the hospital staff prior to my due date, so they would know our desires and wishes. I had arranged for another friend who is a dentist to come and do her hand and foot molds after she was born.
Usually, the mothers of anencephalic babies will not go into labor on their own, so we scheduled for me to be induced on Tuesday, February 13, 2007. Finally, her birth date came. We were so excited but sad at the same time. I had a hard time with the decision to induce because I felt I was not only picking her birth date, but her death date. It was a terrible feeling. But I also knew that if we didn’t induce we wouldn’t get the chance to hold her while she was alive and she would eventually die in the womb. The doctors constantly reminded us that there was a very small chance that she would survive birth. They tried to prepare us for her to be stillborn, but we felt calm and peaceful that things would work out. We had our children and family in the waiting room, ready to come in as soon as we sent for them.
After my husband and I had spent about 5 minutes alone with her, we sent for our other children to come in. It was a magical moment. They were so entranced with her and couldn’t get enough of her. They each had many turns holding her. She would make light puffing sounds when she would breathe out and blew a lot of bubbles out of her mouth. The children loved this and it became very endearing to us. She continued to breathe okay and her coloring looked good for the most part, so we invited in our family and close friends. When we saw how well she was doing we let everyone have a brief turn holding her. Eventually, the hour was getting late and our children needed to get some sleep. We said our goodbyes and goodnights, not knowing if she would last through the night.
It was a very long night. It seemed that we lived in 5 minute increments. She would do well and her coloring would be good, then she would turn purple and stop breathing, then she would manage to start breathing again and her coloring would be good again. We had decided ahead of time not to put her on any life support. We didn’t want to prolong the inevitable and have a machine keep her alive if it was her time to go. Throughout the night she had many seizures. These were terrible to watch her endure and we thought we would lose her with each one, but she hung on.
By 7:30 the next morning I called my parents and asked them to bring the children down because we didn’t know how much longer she would be able to hold on. They came and the children continued to hold and love her more. It was Valentine’s Day and being children they were excited about their Valentine’s parties at school and they felt very torn between going to the party or staying with Candace. They chose to go to the party. Candace continued to fight and hang on and we continued to love and cuddle her and soak up every possible minute. The doctors and nurses felt she could continue this up and down pattern for quite some time and we started discussing the possibility of bringing her home. Our 3 year old daughter really wanted to bring her home.
When my older two children returned from their Valentine parties, they were so relieved to see that Candace was still alive. I asked them if they wanted to help me dress Candace in the clothes I made for her and bring her home to our house. They cheered and gathered around her and me on the bed and helped me change her diaper and start to put on her clothes. We sang a song to her while we dressed her. The song we sang was, “I Am A Child of God.” After we finished singing I noticed her coloring wasn’t very good again and called for a nurse. The nurse confirmed that she had stopped breathing again, but this time her heart was slowing down and she was fading.
The moment we had been dreading for 30 weeks was here. It was her time to go and we sensed it. We gathered her in our arms, our children were snuggled in around us and we kissed and hugged her goodbye as her heart beat its last beat at 5:13 pm. She lived 23 hours and 13 minutes. We knew this moment was inevitable. We felt it was a miracle to have as much time as we did with her. We just sat and held her for a long time. When we were finally ready to go we received clearance from the hospital to take her home to bathe and dress her before taking her body to the funeral home.
I’ll never forget the car ride home, holding my baby in my arms, smelling her sweet soft skin, caressing her cheek, and feeling my tears spill over onto her face. When we arrived home we bathed her and put on the larger of the two burial dresses that I had made. We put on the cute bonnet that I had made to go with the dress. She looked beautiful. We had arranged for our photographers to come to our home and take some pictures of her for us before her body stiffened too much. This is when we had some of our most precious pictures taken.
After the photographers left, our children were put to bed, and my husband and I were alone again, we held our baby and wept. We wanted to continue holding her all night, but knew we were keeping the funeral home open very late. We finally summoned the courage to drive to the funeral home. Leaving my baby at the funeral home was one of the hardest things I had to do. I didn’t want to be separated from her. We drove home and cried ourselves to sleep that night.
The next couple of days were a blur and were spent making arrangements for the funeral. Our family was very helpful in taking care of our other children while we made the final arrangements. My milk came in during this time. I had decided ahead of time to pump and donate my breast milk in hopes that it would benefit a baby somewhere, and also maybe help me balance out my hormones over the next couple of months. This ended up working out fine in the weeks to come, but during this time of planning the funeral it was more of a nuisance and a painful reminder. I felt numb and disconnected to the world. I wanted Saturday (the day of her funeral) to hurry and come so I could hold my baby again.
Saturday, February 17th did finally come. It was a beautiful sunny day with blue skies (which is rare for Oregon). Our family dressed in pink in honor of Candace. We drove as a family to the funeral home to pick up our baby, then drove to the church. Our friends and family had made a beautiful memorabilia table in the front entryway. Our photographers had made a slideshow from the pictures they had taken of our time with Candace and put it to music I had previously picked out. It was precious.
We greeted our guests who wanted to see our baby Candace. Then our children held her and kissed her goodbye. I thought my heart was breaking in two as I hugged and kissed my baby for the last time and placed her in her tiny casket. Putting the lid on her casket was the hardest thing I have ever done. It was like closing a door to my heart that could never be reopened until I am reunited with my baby again. Her service was beautiful. This little baby touched so many hearts and lives. She was a miracle.
We convened to the cemetery, where my siblings sang, “The Lord Bless You and Keep You.” We had flowers for all in the group to take turns and place on her casket. It made me smile to see the pile of flowers was larger than her little casket. We had 50 white balloons that we released. It was symbolic for us. Letting the balloons go was like letting her spirit return to heaven. Eventually all had said their goodbyes and left. Our oldest daughter (age 7) wanted to stay and watch the burial. Originally my husband and I had decided that we did not want to stay for this part, but because of our daughter’s desire to stay, we decided to stay. It was emotional to watch, but at the same time comforting to see her tucked into mother earth and peacefully laid to rest.
The butterfly has become our symbol for her. Shortly after Candace passed away our children came up with this beautiful butterfly analogy. They explained that when she was in my tummy she was a caterpillar, and when she was born she was in her chrysalis because she couldn't move around very well in her body. Then when she passed away, her spirit was set free and could fly away to heaven, just like a butterfly.
It’s now been 1 year. We celebrated her 1st birthday by writing little notes and putting them in white balloons and releasing them by her grave. We snuggled together in blankets by her graveside and recounted favorite memories with her. Our children enjoyed decorating her resting place for her birthday and also for Valentine’s Day. We returned home to have birthday cake and surprised the children with a gift for each of them, instead of for Candace. Our home and front yard is decorated with little butterflies here and there as precious reminders of her. We have sweet memories of our baby Candace and her journey, and even though we miss her terribly, we know we will see her again. For this we are so grateful. Our family grew so much from this experience. Our relationships are stronger, our desire to be better is stronger, and our faith is stronger.
Even though I never want to go through this again, I don’t regret our experience or wish to change anything that happened. I’m so grateful we continued on with the pregnancy. It makes me shudder to think of all the sweet experiences and memories we would have missed out on. After all, some people only dream of angels, but we held one in our arms.
Elena Christine Black
Elena Christine Black, our second child, was born with Potter's Syndrome (a lack of functional kidneys), and lived for a painfully short 1 hour and 30 minutes. I will always cherish the time I got with her; she had a beautiful, perfect spirit. We never got to see her open her eyes, but what comforted me was that she never had a look of pain on her face. She looked at peace, like she was sleeping. She made little cooing noises, too, which I thought at the time she was trying to talk to me, to tell me all she could about heaven and to tell me that things would be alright.
We had found out about this fatal condition just after my 20 week checkup. Until that time, I did not suspect anything was wrong. At my routine 20 week visit, during the ultrasound, I thought it was a strange that we could not see the baby very well, and that they could not tell me the gender. Not even when they told me that I should go and see a specialist (Dr. Celeste Sheppard) the next day, did I think anything was seriously wrong. At that point, I naively thought that doctors could fix any problem my baby might have; my belief in science and medicine was devout. I went to the specialist the following day, thinking that my baby's problem could be easily fixed. My husband, Gabe, was having a busy day at work, so he could not attend with me. Dr. Sheppard gave me another ultrasound, and hummed and hawed about what she saw, but still told me nothing. Finally she took me into a small waiting area and asked if my husband could come to be with me. I tried calling him, multiple times, but could not get through. So finally, without my husband, Dr. Sheppard broke the news to me, that my baby had renal agenesis, or lack of functioning kidneys, and was “incompatible with life.” The baby basically had no chance of survival. The doctor also told me that there was only a small chance that the baby would survive until delivery, and even a smaller chance that she would survive for a small time after birth.
My mind could not let me believe what my ears were hearing. I started crying, but even at that time, I did not think what she had told me could be true. I remember going home, and hearing the phone ring. I could not answer it. It was Gabe, wondering how the doctor's appt had gone. He called again and again, and finally the third time I picked up the phone, and sobbed to him what the doctor had said. He came home immediately to be with me, and we did not know what to do. Gabe started researching online about “renal agenesis,” and we both sat there, reading all we could about this condition. We could not find much information, but what we did read did not sound optimistic. To add to all this stress, we were supposed to be moving within the week from an apartment to a house we had bought in Round Rock, Texas. I did not have any energy to be moving, but in a way, I guess it kept me busy instead of dwelling on the baby. Anyways, in the next few days and weeks, we were still in denial and went to get a second opinion from another doctor. Then we drove all the way to Houston, to see a kidney specialist and a doctor who was reputed to have performed miracle surgeries. No one could help us-- they all gave us the same dismal prognosis. We insisted on getting an amniocentesis and amnioinfusion done, even though Dr. Sheppard did not believe it would help the baby in any way. We wanted to do everything possible to help our baby, even though there was really nothing we could do.
The second half of my pregnancy was by far the hardest time in my life. Almost everyday I would break down and cry, until I was exhausted. I got so tired of trying to call doctors, scheduling appointments, and especially all the waiting time between visits. Before each doctor's visit, I would get my hopes up, only to have them crash down once again when the doctor told me the reality of the situation. I kept thinking a miracle would happen, and somehow my baby would be different than the rest, that somehow her kidneys would magically kick start into action. I thought that if I had enough will, and if I prayed and begged God enough, that He would let me keep my baby. But it is His will, not mine, that is done, and He sees everything and knows what our purpose is in this life, so much more than we could ever comprehend. I think this was the first time in my life I had ever felt completely out of control, and I had to put it all in God's hands.
On Saturday, August 26 2006, I went to a church activity that morning. After I got back, Gabe and I worked in our backyard, clearing out the remains of our long neglected vegetable garden. Then we went to Lowe's and bought some houseplants. I think I pushed my body too hard that day, because that night the contractions started coming fast and furious. I timed them for an hour, and they were getting close to 5 minutes apart, so I decided we needed to get to the hospital. We dropped off our daughter at a friend's house, and also called our parents to let them know. This was at around 1:00 am. Gabe's parents packed up and left almost immediately to drive here from Colorado, a drive that would take them all night, and my mom changed her flight to leave early the next morning. Elena was letting us know she was coming, and wanted us to be ready. The funny thing was, at the hospital they checked me and said I was dilated about a 3 or 4 so I should stay there, but then the contractions slowed way down. I was still progressing, but the contractions started coming further and further apart. Finally I progressed to a 6, and then the contractions pretty much stopped altogether. They were very irregular, and the doctors were puzzled. They told me I was not in active labor anymore., and let me walk around and eat lunch. I started thinking it was a false alarm too, and that I would have to go home. Gabe's parents and my mom finally arrived, all at the same time, at around 3:30 pm (this was on Sunday, August 27 2006). They hadn't been there very long when my contractions started picking up again. They got to about 10 minutes apart and did not get any closer than that, although they were really painful ones. I asked for an epidural since I could not handle the pain anymore. I got the epidural, and they also gave me pitocin. Barely had they done that, when my contractions got a lot closer together and I was ready to push. I told the nurses that, and the doctor hurried in. All it took was two pushes, and Elena was born at 8:01 pm (5lbs 8ozs), and her time on earth was counting down.
They took her away immediately, to clean her and do the necessary things, and I could hear her weak little cry. I still had a small amount of hope that she would be okay, until I heard the doctor's assessment of her, and her weak breathing. From what I could hear the doctor telling Gabe, it did not sound good. I immediately broke down and started sobbing quietly. As soon as I was ready and stitched up, they put Elena in my arms. She was beautiful, and did not even look like anything was wrong with her, except that she was slightly purplish in color. She did not move very much though, and I could tell she would not be on Earth very long. I barely had time to get modest before my mom and Gabe's parents came in to see her. Everyone got a chance to hold her, but I was lucky enough to hold her most of the time. We waited until the Bishop arrived to give her a blessing, then Gabe said a very special blessing for her. Everyone sat quietly in the room a long time after that, and just enjoyed Elena's spirit that was felt there. The nurse came in periodically to check Elena's heartbeat, and each time it sounded fainter and slower. Finally after an hour and a half, the doctor came in, and he could not make out a heartbeat. He pronounced the time of death at 9:43 pm.
The other people in the room left soon after, and Gabe and I were left alone with Elena. The nurse came in and helped us give her a sponge bath.. Since Elena had so hurriedly been given to me, she had not been cleaned off properly, so there was something really satisfying about being able to wash her off and give her a bath. I enjoyed it, even though we had to be careful not to bruise her fragile skin. Then we dressed her once again, and held her for a while longer. The hospital staff gave us the option of moving to another floor for the night, away from the other babies, and we agreed and thought that was a good idea. I was wheeled away in a wheelchair, even though I protested and thought I could walk. We brought Elena with us, and she stayed with us throughout the night. It was rather odd; sometimes my mind played tricks on me and I thought she was just sleeping. Sometimes I even imagined I saw her breathing. Then I would touch her skin and it would be cold. So I would try to warm her body by putting it under blankets and keep her right next to me. I know I was acting irrationally, but my motherly instincts were telling me to do these things. After all the excitement of the past two days, Gabe and I were exhausted, and it felt strange, but we laid Elena on a chair in a corner of the room, and we went to bed. I surprisingly slept rather well; I was exhausted due to my sleepless night the night before. We tried to make our memories last forever, by making hand and foot molds of her hands and feet. The night before we had cut off a piece of her hair, and imprinted her hands and feet on several sheets of paper. The rules said we could not take Elena home with us, but had to call the Beck funeral home to come pick her up. So we sent her off with them, and then cleaned ourselves up and left the hospital as soon as we could.
When we got home, Gabe and I had to start thinking about funeral arrangements, since I had refused to think about that before. We went to the Beck Funeral Home, and picked out a casket, then drove around looking at cemeteries until we chose one we liked. The next day, we had a small viewing at the funeral home. All that day we stayed there in that room, next to Elena. It still seemed unreal to me that this could be happening to us. I couldn't believe my baby was gone, and I still tried to see some breathing motion coming from her, even though she was lying perfectly still in her coffin, just like a little porcelain doll. Friends came to pay their respects, and some would start crying when they came in, but I felt all cried out. I had done so much crying in the past few days, that I couldn't force any more tears to surface. I was glad we got to spend that day with Elena, even though no time would have been enough to say goodbye.
The next morning was Elena's graveside and memorial service. By that time, more family members had joined us to share in our sorrow. My sisters Christa, Linda, and Wendy had all come, and my dad had flown in too. Gabe's sister Holly had managed to find a last minute airline ticket too, so she could also be there. I was grateful to have so much family support there with me, and it kept some of the loneliness and pain from settling in. I was really nervous for the memorial service, since I had to speak at it, but after Gabe calmed me down the night before, I was able to feel confident to say what I had prepared. The memorial service was a very spiritual meeting. Both Gabe and I spoke, then a musical number, and then both Grandfathers gave talks as well, and it ended with a few comments from the Bishop. After that, I really just wanted to go home and not talk to anyone, but the Relief Society had prepared a luncheon for everyone there, and my friend Kristen had prepared a slideshow of all the pictures she had taken at the hospital. It was hard watching that, and even harder to get through that lunch. But somehow I got through it. By then, my milk was starting to come in, and I was glad when all the excitement ended and I could go home and focus on my aching body.
The next few days, I remember taking long baths, and putting frozen cabbage leaves on my chest. It was physically painful, but even more emotionally painful to know that my baby could not drink any of the food I was producing. Eventually, one by one, family members had to leave and we were left alone.
As the weeks, months, and now two years have gone by, I still miss my little baby girl. I wonder what
she would look like now, and how she and Ashlee would have so much fun playing together. I feel
sorry for Ashlee that she doesn't know her little sister. But because of the hope the gospel brings, I can
feel reassured that we will see her again. Because the gospel teaches that families are forever, I hope I
can be righteous enough to see Elena and be a good mother to her, like she deserves. I know that
because of Jesus Christ we can repent from the mistakes we make, and have a second chance to do
things right. And I want nothing more than to be Elena's mommy.
Until we meet again,
Andrew Gordon Lewis
In June of 2008, I found out that I was pregnant with our fourth child. We planned for it to be our last baby, and decided early on that we wanted to do things differently with the pregnancy. I'd been induced the previous three times, and I really wanted to go into labor on my own. We also didn't want to find out the gender of the baby, since we already had two boys and a girl. I was very determined to have things my way. How quickly I found that things don’t always go the way you anticipate.
My husband was activated with the Air Force in September of 2008, and things began to get difficult. I was virtually alone with three children, working full time, and pregnant. I began to feel poorly, but pressed on with life. My husband and I bought webcams, and I'd show him my growing belly each night with amazement.
At just before 17 weeks, I began to feel increasingly worried about the baby, but could not pinpoint a reason why. After almost a week of near-panic, I walked into my OB's office without an appointment, and asked to be seen. When they asked why, I couldn't do anything but cry and shake my head....I didn't know why.
I was taken back to an exam room and the nurse practitioner began to look for the baby's heartbeat. But only my own rapid heart sounded over the Doppler. She continued to try for more than15 minutes, and finally left to go get the doctor (not mine, since he was off that day), all the while assuring me that I shouldn't worry and that everything was fine. The doctor came into the room and expressed no concern at all; she started looking for the heartbeat and couldn't find it. After a few minutes, I was moved to the ultrasound room, where it was immediately clear that our baby's heart had stopped beating. I felt like mine stopped along with it. I do know that it broke a bit that day.
As I cried, alone, on the ultrasound table, I wondered how I would tell my husband that our child had died. The doctor refused to discuss details with me at the time, instead telling me to try to calm down and we'd talk in her office. She asked who she could call for me. I shook my head and told her that I had no one.
The short walk down the hallway was a blur. I don't even really remember going into her office. The doctor gave me all kinds of technical terms and options...but the gist of it was that I would have to be induced and deliver our baby. I left her office in tears, sneaking out the back door so as not to upset other patients in the waiting room. The drive home by myself was long, and I don't remember a great deal of it.
I got home and tried to call my husband, who was stationed in Texas. I got his voice mail and left a message for him to call me back as soon as possible. I talked to both my mom and my mother-in-law, and each tried to do whatever they could to help. My mother-in-law immediately drove to my house. My husband finally called back, and I had to break the news to him that our baby was gone. That was the hardest conversation, aside from telling our children, that I've ever had. And unfortunately, my husband couldn't get home immediately.
We made the decision that I would be induced the next day. My daughter's birthday was coming up, and I didn't want to celebrate life and death on the same day, so I had a real sense of urgency. I was able to get in touch with my own doctor the next morning, and I immediately went in to see him, along with my mother-in-law. I was admitted to the hospital and put on a variety of drugs to induce labor. As I labored over the next ten hours, I had a lot of time to think. My husband and I stayed in close phone contact, with either me or the nurse telling him everything that was happening as it happened, while we each suffered separately. My mom and my mother-in-law stayed close to me at the hospital, leaving only to get my other children taken care of. We discussed funeral plans, and made arrangements for our baby to be buried near my beloved great-grandmother at our family plot. My mother-in-law had begun to crochet a white blanket the evening before, and she finished it up only moments before leaving the hospital to go home with my children. I was able to knit a tiny white hat as well.
My mom stayed at the hospital with me that night, although I refused to have her in the delivery room. I felt strongly that if my husband couldn't be there to see our child, that I didn't want anyone else to see our baby either. I talked to my husband on the phone throughout my labor, but I finally was unable to talk anymore, due to the amount of pain I was in. I refused all pain medication, as I wanted to be alert for every moment of our baby's birth. At 11:04 p.m. on October 16, 2008, Andrew Gordon Lewis made his silent way into the world.
His tiny body, weighing less than a pound, was perfect. He had fingernails and long fingers and perfectly shaped ears. His eyes were closed, but his tiny mouth was open, revealing beautiful, almost smiling lips. The nurse wrapped him in the small white blanket that my mother-in-law had left for him, put his small white cap on his head, and I held him for as long as I could. Unfortunately, I had to be taken for a D&C, since my bleeding was particularly heavy. The nurse took Andrew back to the nursery, photographed him and watched over him until I could hold him again after my surgery.
I took more photos of Andrew and held his tiny body against my chest, savoring every moment. I kissed his sweet head and held his small hands and fingers. Finally I called the nurse and she took him from me for the last time. The funeral home was on standby, and they came and picked Andrew's body up. I was discharged about five hours later, at my own request. I had no desire to stay in the hospital on the maternity floor with no baby to take care of. And it was my daughter's birthday.
Going home was hard to do. My arms ached from the emptiness of them. Walking into my house seemed odd, as if someone was missing. I'd walked out of our home with our child in my belly, and I walked back in without him. It felt so wrong.
Two days later, my husband made it home. His unit arranged for him to be picked up at the airport and driven home. We spent time together, and after the initial excitement of his being home had worn off, we were able to tell our children what had happened to their brother. They each took it differently; our youngest two were only barely 3 and 4, so their understanding was limited. Our older son however, understood it all, and wept openly at the thought of never being able to see his brother.
The funeral was a hard time. We kept it simple, having only a graveside service, with our bishop presiding. Our longtime family friend dedicated our son's grave, and we sang "I am a child of God." Our youngest two children played around the tiny casket during the service, and we made no effort to stop them; it was their only time with their brother. They each placed small mementos on his tiny white bed, and my husband himself lowered it into the ground. After everyone left, my husband and I played special music, and read a book to our baby that I’d bought just for him early in my pregnancy. And then his short time here was done.
I've had several people tell me since Andrew’s death, "Oh, I've known someone who's had a miscarriage...it's okay." But the truth of it is that I DIDN'T have a miscarriage; I had a baby. A sleeping angel, who will always hold a place in my heart. But I wasn't ready, I wasn't prepared for him. I look back and wish that I had been more prepared, wish that I had more to give him. I couldn't dress him; the hospital had nothing tiny enough for him. In the end, he was wrapped in another blanket that my mother-in-law crocheted during the night when he was born, wearing another hat that I'd knitted. I had nothing else for him. Fortunately, I had the blanket that he was wrapped in and the hat that he wore after I delivered him to keep. They sit in a small box in my hallway, with other mementos that I managed to collect; his crib card, his hospital bracelet, and a few photos.
Losing a baby at any stage is a life changing event. I’m not sure you ever recover completely; I know I haven’t. But if my small angel taught me anything, it was perspective. I look at things differently now. I see the beauty and the blessings in the smallest things. I treasure life more; I appreciate our children who remain with us in ways that I never thought possible. I love deeper. And that is the biggest blessing of all.
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