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Railyn Hope

Railyn Hope, baby with anencephaly

 

On March 13, 2018, I found out I was pregnant. With having a miscarriage in November 2017, worry automatically set in. Until I remembered what my doctor had said, I had previously had 2 healthy girls before my miscarriage so there shouldn't be anything else to go wrong. I immediately told my mom and sisters. After calming down, I called Andy and told him the news. He tried his best to talk to me and reassure me that everything would be okay. I think he knew my mind would be a mess. It being a Saturday, I had to wait until Monday to call and make an appointment. It was made for a month away. I could already tell that anxiety would be my new best friend. From the moment we found out, our family knew. They were so supportive and were there for everything they could be.

Within that time, we had a trip to Pigeon Forge scheduled. My girls, Kailey and Aubrey, had been excited so we went as planned. While we were there, morning sickness had hit me. I wasn't even upset. It's a good sign. We done all we could do to enjoy our time there. We returned home later that week. We let the girls in on our little secret but we decided to not let anyone else know until we knew whether or not we were in the clear. In my mind, I thought it'd be impossible to have anything wrong but I knew in my heart that there was a reason I shouldn't be excited just yet.

Finally, it was time for my appointment. Filling out the papers, the initial testing. It seemed like forever. After what seemed like an hour, it was time to get an ultrasound. I was around 8 weeks. My due date was November 15th. Right off, he told me something was wrong. Something was abnormal with the baby's head. I remember thinking "no, that's impossible. It's too early to tell." He told us to come back in two weeks.

At 10 weeks pregnant, I had another ultrasound done. He said the same thing. He believed the baby's neural tube did not properly close so therefore, the baby may have a neural tube defect. He said if what he thinks that's wrong is true, then we would have two options. One is to terminate the pregnancy or two, to continue the pregnancy but to understand that our baby would not live after birth.

I had to have bloodwork done after my appointment that day. He wanted to do testing and I had the choice to have the test done for the gender. He also sent a referral for us to see a specialist in Huntington to have the diagnosis confirmed.

I had hope. I didn't cry, talk or even know what to say after we left, but I still had hope.

A week later, I received the call saying that all testing from my bloodwork was normal. She asked me again if I wanted to know the baby's gender. I said yes without even thinking. Our precious little baby was a girl.

At 12 weeks pregnant, we got ready and made our travel to Huntington. The ultrasound tech looked for a while and saved pictures. She was calm and professional, but I could tell something was wrong. When she was finished, she handed us the printed sonograms and told us our doctor would be in shortly. It wasn't even 10 minutes and she entered our room. She asked if she could double check a few things and then she confirmed to us that our baby did definitely had a neural tube defect. She took time to explain everything to us.

Our little girl had anencephaly. Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). As the neural tube forms and closes, it helps form the baby's brain and skull (upper part of the neural tube), spinal cord, and back bones (lower part of the neural tube). Anencephaly happens if the upper part of the neural tube does not close all the way. This often results in a baby being born without the front part of the brain (forebrain) and the thinking and coordinating part of the brain (cerebrum). The remaining parts of the brain are often not covered by bone or skin. Anencephaly is rare. I had never even heard of it before until it happened with our baby girl. The CDC estimates that each year, about 3 pregnancies in every 10,000 in the United States will have anencephaly. This means about 1,206 pregnancies are affected by these conditions each year in the United States. The causes of anencephaly are unknown. We were told that our baby would be lucky to survive birth, but if she did, she would die not long after being born.

We were devastated. I had lost all hope, I questioned my faith, I didn't know what to do or what to say. She told us the same options as my other doctor, but she said that carrying to term is always the first option. She hugged us, told us she was sorry and let us know we could call her any-time with any questions. She told me that the grief nurse they have would be contacting me soon. Little did I know, the once a month calls from that lady was something I always looked forward to.

We were told to take our time with our decision, but to let her know as soon as we decided.

We arrived home that day and talked it through. I looked up and read other women's stories and seen where most terminate. There reason being it's the easier way out. It did seem like it would be easier but I just couldn't bring my heart to do it. This baby was brought to me for a reason and even though I didn't totally understand, I believed I was supposed to give this baby as much life as I could.

On our way home, I remembered that I had some family and friends who had texted me kind words and wanted to be kept updated so I done so then.

After arriving back home, it was quiet. Everyone was speechless. Kristin stopped by and cried with us. It was heartbreaking to know what to expect in our future.

That evening, we decided to finally give our little girl a name. Railyn Hope. I was so in love with it and couldn't wait to tell everyone. We announced it on social media and explained everything about her and her diagnosis. The support and love we received was overwhelming.

Most days were hard but we got through it. We now had appointments to see our doctor every two weeks. Being pregnant with a baby that has a defect can sometimes cause other defects or can cause health issues for the mother. So I was having to be checked often.

June came, we went to Myrtle Beach. Even though Railyn was still in my belly, it was technically her second vacation. We relaxed in the pool, shopped and enjoyed the ocean with her two big sisters. We had her daddy, aunt, mama and papa with us as well.

The summer months were exhausting. I had morning sickness every day and the heat was horrible, but I kept thinking, anything for Railyn. We only get a limited time with her.

Her big sisters were so happy to tell people about her. From the time we found out her diagnosis, we talked to them. We told them their little sister was sick and that when she was born, they could hold her but the angels would come shortly after to take her to Heaven. They were upset for a little while but they know that as long as someone's in Heaven, there is no more pain or sickness.

Months passed by and we were taking one day at a time. We always talked about Railyn to everyone and tried to make the best out of it all. We didn't want pity or sadness; we wanted everyone to be thankful along with us for the time her family will get with her.

Our families were a huge part of our support. My parents, Cheyan, Tiffany and Kristin were always buying little mementos for me to keep to always remember our baby. Andy was trying to think of different things to do to always remember her too.

September was already here. Now it seemed like time was going too fast. Everything was finished. Her funeral service arrangements were planned, her obituary was written and her birth plan was completed. It was recommended that we had everything done ahead of time just in case we weren't in the right state of mind to plan anything after it happened.

I had to start seeing the specialist in Huntington every 2 weeks now. My sister, Cheyan, made sure to take off work to attend every visit with me from there on since Andy couldn't be there due to work. Before then, my mom, dad or Tiffany would take time to go.

At 32 weeks, I still hadn't gained any weight. My stomach wasn't measuring where it should be. Railyn's weight was okay but she would still need to be watched. Her head was low and she was causing me some pain but it was good that she moved down. I was told I would be induced on November 8th at 39 weeks as long as Railyn stayed in there until then.

She was always active at every visit. She was amazing. 36 weeks, she wasn't growing the way they wanted. They believed her to be around 4 pounds. I was told to start coming every Monday to Huntington and then every Thursday to Teays Valley. A few more weeks went by, she gave us a couple of scares but everything was alright.

At 38 weeks, she flipped back around to being breech. Railyn was definitely showing us what she could do. The discussions about having a c-section started. It was a risk but she was breech. A few days later, I was seen again. She had flipped back around to being head down but that wasn't the biggest worry anymore. Due to Railyn being so small and with her abnormality, it was believed that c-section would be the better way for me and my baby. Having a small baby doesn't help your body prepare itself for labor so an induction would more than likely put her in distress. I was told that if I wanted an chance to hold a live baby in my arms, then I would need to think about having the surgery done. I had one back in October 2014 with my other daughter so I knew what to expect. I thought that I didn't go through nine months of pregnancy to not be able to hold my little Railyn alive. I agreed. It was set.

Wednesday, November 7th, I was scheduled to be at Cabell Huntington Hospital at 6 am to start my fluids and get ready to go into surgery at 8 am. We had decided that since we live an hour away, we would go the evening before and stay at a hotel close to the hospital. Not only to make it easier to go the next morning, but to also make it easier on our girls. Our families stayed with us that night.

I was nervous. I couldn't sleep. Every thought possible ran through my mind. The next morning, I would finally be doing something I had waited so long for. I would be meeting my amazing daughter that fought so long and hard my whole pregnancy. I think I got maybe 3 hours of sleep that night.

The next morning, we got up and started the process of getting everything ready to go. The date was Wednesday, November 7th. This day would forever change our lives.

Our families stayed behind to get the girls ready and planned to be there around 7 am. I was nervous. My sister, Cheyan, went with us to the hospital. We arrived and the nurse done all the preparation stuff and put us into our room. Another nurse came in to do bloodwork and to get my fluids started. Now it was just the waiting game. We had to wait for my nurse team and my doctor to arrive. While waiting, we made jokes and took pictures. First, my family arrived and then Andy's. I could tell Kailey and Aubrey were confused about what was going on. My parents helped us explain to them that they were going to get to meet their little sister that day but I think they didn't really understand why I was hooked up to machines and an IV. Tiffany finally got there shortly after and I think it helped the girls a lot to have her around.

Around 7:45 am, the nurse team arrived. The head nurse, also known as the grief nurse, came in and checked on us. She asked for the blanket and hat we wanted Railyn to be first put in and she provided a selection of gowns for us to choose from to have Railyn dressed in. They were called angel gowns. They were made from wedding dresses that women donate for the gowns to be made from. Also, due to having anencephaly, her head would more than likely be exposed at the top, so it was asked if we wanted to put a hat on her.

About 10 minutes later, we had a couple more family members and friends show. Then, our doctor came in smiling. She asked if we were ready. We weren't but we knew it was time. Andy was given his gown and mask. I had to have my hair put up with a hat type of thing. Then we were off to the operating room. Andy was told to remain outside until the room was ready. I was given my spinal block and was laid down on the bed. While the numbness was settling in, I was hooked up to different machines to monitor me while having the cesarean done. The nurses also scrambled around to prepare the room. They put the fabric wall up at my chest to block me from watching the procedure, they got the baby table ready for when Railyn was born and they laid everything the doctor would need out for when she was ready.

My nerves had suddenly got the best of me. I started crying. They gave me medicine in my IV to calm me, then the medicine made me sick and I started to throw up. I was a mess. I wasn't ready for this. I didn't want to meet my baby and have to say goodbye. The nurse talked to me and told me everything would be okay. She told me I was so strong for giving my baby a chance and I should be happy about getting ready to meet her instead of being upset.

My doctor entered the room and automatically came over to me. She laid her hands on me and put her head near mine. I remember her crying and trying to talk calm to me. Her voice calmed me down almost instantly. She talked to me for a couple of minutes and asked if I was ready. I was.

They opened the doors for Andy to come in. He came in and sat beside my head. I couldn't see all of his face because of his mask, but I could tell he was nervous. It was time. It got quiet and everybody waited. Every now and then, my doctor would look over the fabric wall and update me. I remember her saying everything's going good or you're doing great, Samantha. I was anxious.

Railyn Hope, baby with anencephaly

Finally, this beautiful little baby girl was held up for us to see. She was born at 8:39 am. She weighed 4 pounds, 10 ounces and she was 17 1/2 inches long.

I felt instant panic. There was no noise. She didn't cry so it had to have meant she was gone. She was handed over to the nurse. Nobody seemed upset. I was so confused. I turned to Andy and asked, "Is she alive?" He looked at me and then back at Railyn. She was. Our little fighter was still with us.

The nurse wiped her down and let us see her. She then asked Andy to help her lotion Railyn and put her angel gown on her. After finishing, Andy sat back down beside my head and the nurse handed our baby to him.

I couldn't believe it. She was so beautiful. Every worry I had left me. I knew it could still be anytime that we would lose her, but I was enjoying the time I had.

After my doctor had finished, she hugged us and then we were taken back to our room. We had some time with her before our family came in. Our girls came in first along with my parents and Andy's parents. Kailey and Aubrey loved her so much. We then agreed to let the others come in. Tiffany, Cheyan, Paul & Kristin (Railyn's aunts and uncle), Mia (cousin), Jessi (cousin), Tina (friend), our pastor George, and our photographer Dixie. Dixie took some amazing and beautiful pictures of us and our family with Railyn.

A few hours had passed and we wondered how much time we would exactly have since she was with us longer than everyone had thought. Our doctor didn't know. The NICU doctor didn't know. The nurses didn't know. Everything Railyn did, they were unsure about. Even though they were the best hospital to deal with babies like Railyn, they still had only had a few cases like her.

After the time had passed and I was finally able to sit up due to the surgery, we bathed Railyn. Kailey and Aubrey helped dress her. Andy had to buy her a sleeper outfit from the gift store. We had only brought the outfit she would receive her pictures in and be transferred to the funeral home in since we hadn't expected to have more time with her.

That night, we were exhausted but we were so thankful to still have her with us. We hoped she would still be with us the next morning. Our families stayed that night with us at the hospital. Everyone received time with Railyn and was able to hold her.

The next morning, my sisters had to go out and buy more sleeper outfits for Railyn. They even got her a couple of blankets. She was one day old. Our little fighter wasn't giving up just yet.

The second night, we had the sweetest nurse on call. She brought Railyn a couple of outfits and even knitted her a hat.

Our sweet girl smiled anytime you touched her hat or face. She would kick her feet if you tickled them. She even stretched a few times. She done things that we were told she would never do.

The third day, we began to wonder if since she was still fighting, if maybe she would be hungry at all. We first tried to feed her milk with a syringe. She had trouble but they believed along with us that she was wanting milk so it was decided that they insert a feeding tube. Andy and I took turns feeding her every 3-4 hours with a syringe to the tube. Kailey and Aubrey were even helping. They done as much as they could to help with her.

Later that day, we were given the option of taking Railyn home or we could transfer to the Hubbard Hospice House in Charleston. If we would have chosen to go home, then we would have to understand that the hospice nurse would only be able to come once a day to check in on Railyn. We decided to go to the hospice house.

That night, the ambulance arrived to transfer us. We arrived there at around 9 pm and got settled into our new room. Shortly after, our girls, my parents and my sisters arrived. They wanted to stay with us.

The first night there, Railyn done good. I was afraid that I would get used to the feeling of everything going so well with Railyn that everything I had worked so hard to prepare for would crush me even more. The next couple of days were still good. Then at 4 days old, her feeding wasn't agreeing to her belly like it should. We had to stop the feedings. My heart was broken. I instantly thought I would be starving my baby. The nurses reassured me that she would be okay and that she wouldn't feel the hunger due to missing the part of her brain that would tell her that.

Every night, we had family staying with us. Everyone took turns staying up and watching Railyn. They would all take turns holding her. My mom would take walks down the halls with her and take her to the cafeteria to watch Christmas movies. Railyn was even here for the first snow. There was a couch outside our room that I sat with her quite a few times at.

Railyn Hope, baby with anencephaly

Our Railyn was famous. She had so many visitors and her beautiful pictures and story was all over social media. The nurses were amazed by her. I would send updates to my doctor, she was amazed as well. Of babies affected by anencephaly born by c-section, 53% died within 24 hours, 30% lived up to 5 days, and only 13% lived longer than 6 days. We knew she would defy the odds.

Then at day 5, we could start telling the difference with Railyn. She wasn't as active. She was starting to lose the color in her face and she just overall looked different. She was having what they believed to be mini seizures. They were not bad but they were enough to agitate her. We had the best possible nurse that day and night. She helped us with absolutely everything and was there every time we needed her. We continued to love on Railyn and to give her as much attention as we possibly could.

Day 6 was the day we were dreading. Things went downhill. Kailey and Aubrey had spent so much time with her but that day, we tried to keep them around her more than normal because we knew it wouldn't be long. Later that evening, our precious girl started to have those mini seizures more frequently. Every time she was moved, it seemed to cause one. Thankfully, we had that amazing nurse again to help us through it. It was a rough day. We didn't know what to expect. Everything that was happening would have to be researched to see whether or not it was normal for her to do. Her heart rate was all over the place and her breathing changed every so often. It was hard to get any rest that night. We didn't know if or when she would take her last breath.

The next morning, which was Wednesday, November 14th, our precious girl was still with us. Her little body was so tired and she was exhausted. We knew it would be soon. We explained to our girls about saying goodbye. They seemed to understand. They both hugged her, kissed her and told her they loved her.

At 8:39 am, she turned a week old. She made sure she proved everyone wrong.

Not long after, she got worse. It got to where our little baby had to be given Ativan and Motrin around the clock. Ativan was finally given every hour just to try and settle the seizures down. The nurse said that the doctor on call that day would be present at around 1 pm and that it was recommended to get approval for morphine to be given to her to help relax her more. Not long later, we were told by the nurse this time that it was time to call all of the family in and to make sure they were there very soon after checking Railyn. Her breathing was becoming more labored and her heartrate was all over the place.

Everyone had their turn of holding her and saying their goodbyes.

While I was holding her and Andy was talking to her, her seizures got worse. She was trying so hard to fight but it was time for her to go home to be with our Lord. Starting around 12 pm, there was multiple times where she would quit breathing to where we thought she was gone but the nurse would still hear a faint heartbeat. It continued until 12:15 pm, then our sweet beautiful girl took her last breath. Railyn gained her little angel wings and was carried into Heaven's gates to be with our Lord.

Of course, we were all heartbroken but I also believe I wasn't the only one relieved to see her go on to such a better place. She gave us an absolutely perfect week with her.

I am so glad to have made the decisions we did. After she passed, we were given four hours with her before having to call the funeral home. I rocked her. We gave everyone the chance to hold her again. The amazing nurse we had those couple of days was off that day, but she somehow knew Railyn was gone. Out of nowhere, she comes in and asks if she was too late. She said she had been out and had a feeling that she needed to come check in. She cried with us and held Railyn before leaving. Andy had some time with her after and then I rocked her again until the funeral home arrived. I didn't want to be there after she was picked up, so everyone made sure to have everything cleaned up and out of the room before then.

At around 4:30pm, it was time to hand her over. The man who came from the funeral home to pick her up ended up being a family friend so that made the situation a little better. I wanted to carry her down the hall and outside to the car but when it was time to, I couldn't. Andy carried her and I walked along side of him with our family behind us. At first, I had the feeling like I was okay. Andy laid her little body in the front seat and kissed her goodbye. It was my turn. I could do this. I leaned down and kissed her. Then I lost it. There's no way I could leave my precious baby laying there. I cried and kissed her a few more times. Then my mom, my cousin Jessi and Kristin helped me walk away. I couldn't have done it on my own. I remember almost collapsing a few times on the way back in the building. Finally getting to the couch in the hall, I was down. Everyone was around me. I was heartbroken. I didn't know how to leave there without her.

After finally getting calmed down, it was time. We had to leave. It was the moment I was dreading, going home without Railyn. Everyone headed to their cars and Andy helped walk me to ours. He sat in the backseat with me and my dad drove us home. I was numb. I remember the car ride home but I had no feeling. It seemed like no time and we pulled into the driveway. I walked in and sat down. Andy suggested that I may feel better to take a hot relaxing shower. For a moment, it was nice then all of the hurt came back. I got out and slept the rest of that evening.

The next day, Thursday, we had to go to the funeral home to finalize everything and to approve for her obituary to be put in the newspaper. I'm so thankful my parents went with us. Before leaving, I asked if it was possible for me to hold her. She was dressed and brought to me bundled up in her blanket. My mom, Andy and I took turns holding her. She looked so peaceful. Her arrangements were planned for Saturday, November 17th. Friday, we had a busy day. Everything we wanted present for her services had to be gathered. We went that evening to get pictures printed and made two boards decorated with pictures from her week here on Earth. We had frames with her picture enlarged in them to have sitting beside her little casket. She also had so many beautiful flowers and plants sent to her. It was perfect. The cd we made with the songs of our choosing made it even more beautiful.

Our pastor did such a great job with her service. Our cousin sang beautifully. Tiffany and Kristin gave their heartfelt speeches. Railyn was blessed.

After her service, it was time to say goodbye and to leave and go to her graveside. Everyone took their turns and then it was time for the family to kiss her one last time. Kailey, Aubrey, Andy and I were first. Then our families. I kissed her again. Andy was able to help close her. He then carried her to the hearse. It seemed like such a long drive to the cemetery. When arriving, they waited for Andy to carry her to where her graveside was set up. Tina brought balloons for the family to let off in her memory and she also put tags on them with her name, diagnosis and meaning. Our Railyn deserved every bit of it. It was then time to go. I went and told her goodbye one last time. We then had to leave so she could be lowered and covered over. It was the hardest things I ever had to go through and I would never wish it upon anyone.

The days after were tough. I am blessed to have so many people that called or stopped by to check in on us. It got to where we just had to take one day at a time. There were days I felt like I couldn't get out of bed and then there were days I seemed fine. Grief is such a crazy emotion and it's hard to understand sometimes.

We visit her grave often. It is and will be decorated for every holiday. It's sometimes hard to believe that my sweet little 4 pound baby was buried under there. I am thankful though to have somewhere to go to visit and talk to her.

From the beginning, we made sure to have our girls involved. We knew that they would feel heartache at the end along with us, but it was only a onetime thing and I did not want them to miss any of it. They attended some doctor visits, they were able to see Railyn on ultrasound regularly, and they were involved in all the decision making for her.

Everyone has their own reason of making the decisions they do, but my decision to carry my little anencephaly baby, knowing the outcome, was the best one I had ever made. Railyn Hope made such an impact on so many lives and I'll be forever thankful for having the strength to give her life she had. She was our miracle.

Railyn Hope Carpenter 11/7/18-11/14/18

Momma's girl & Daddy's world

 

 

 

Last updated January 24, 2019