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Carys Rainn and Paxton Cole

Carys' hands, baby with anencephaly

heartbroken

by Keri Harris Kitchen on Tuesday, 21 December 2010 at 23:06

First of all, Thanks for all the prayers. We found out today that though one baby is perfectly healthy, the other baby does have anencephaly... which means that he or she will not be able to survive after birth. To say we are heartbroken is an understatement. I'm thankful we have a strong support system and I truly believe what scripture says about God working for the good in all things for those who love Him. We don't understand and we know we've done everything we were supposed to do to have healthy babies... but thankfully, faith doesn't require understanding. We just need some time.

From the time my husband Aaron and I have been a couple, our mothers joked about the redheaded twins we were going to have. In 2009, we decided that we were ready to start a family. We wanted a baby. We prayed for a baby. I quietly hoped for twins.

After almost a year of waiting and hoping, we saw the first faint line on a home pregnancy test on September 19th, 2010. It was so faint, Aaron asked me if I was sure there was a line there, and if I was sure it was positive. I said, “Yes. A line is a line!” Just to be sure (and further convince him), I repeated the test the next day, and there was no question. There was a definite line.

From that time, I was continually on edge, afraid something would happen with the pregnancy. Looking back, maybe it was God trying to prepare me for what was ahead. I knew from others how easily a miscarriage can happen. I even went in for blood work around 6 weeks, just to check HCG levels before our first ultrasound. My HCG levels were on the high end of normal.

October 27th finally came and we went for the first ultrasound. When we first saw Paxton on the screen, it was wonderful. We heard his beautiful heartbeat and we were amazed. Then my doctor asked me what my symptoms had been so far. I told him I was mostly just feeling some heartburn and a lot of fatigue. He asked if I’d been having headaches, and I said, “yeah, some.” Then he said, “Well, I’m about to give you a bigger headache… there are two.” The response was nearly involuntary when I asked, “Are you serious?!” Sure enough, tucked in behind a tiny, newly forming Paxton was our sweet little Carys.

We were overwhelmed with emotions. We were excited, a little bit scared, amused, thrilled, thankful… I could continue listing, but I don’t know that I can fully describe the emotions we felt. I called to tell my parents and when I told my dad, “The heartbeats looked good… for both babies,” He was very happy but wasn’t as excited as I’d expected. After we hung up, my mom called back almost immediately, laughing. Dad hadn’t believed me. He thought I was referring to the ongoing joke that we’d be having twins. We were all so excited and already in love with these two precious babies. They’d already changed our lives.

Fast forwarding some time, we made it to December. We had just come through the first trimester and I was beginning to relax a little and not be so worried about the risk of miscarriage. On December 15th, however, the fears came back full force, with reason. Toward the end of our routine ultrasound at 16 weeks, our Dr. looked concerned. He told us that it was possibly just that he couldn’t get a clear scan, but he was having trouble seeing all of twin b’s skull. He went on to explain anencephaly and my mind scrambled to try to make sense of what he was telling us. Still, I was hoping that it just wasn’t a clear scan. He arranged for us to go on to the high-risk specialist the following week rather than in January as originally planned (due to the twin pregnancy).

I had never cried or prayed so hard in my life as I did that week. It’s hard to even think back to the frantic, near panic feelings that surrounded me. Just thinking about that time allows all those raw emotions to come rushing back and even now, I feel like I could choke on them.

I begged God to let us keep her. I begged for her to be whole and healthy. Even so, I knew that I had to accept whatever God had planned. I knew He’d not leave us alone through such a trial if it came to that, but the thought of having to face it was unbearable. God began to give me peace to get me through that week of not knowing whether or not my baby was going to live.

During that time, I researched Anencephaly. I googled phrases such as “misdiagnosed Anencephaly” hoping to find reassurance, only to learn that Anencephaly is rarely misdiagnosed. I cried some more and prayed harder (if that was even possible). I knew that even if our baby had Anencephaly, God was capable of making our baby whole, even though it wasn’t likely. After all, He created them in the first place. He must be capable.

On December 21st, we went, surrounded by prayer, to see the high-risk specialist in Lexington, Kentucky. Waiting was hard, but we eventually got back to the ultrasound. We saw Paxton first, and everything looked perfect. He was measuring right on track and there were no concerns. When we looked at our sweet “Baby B,” I knew before the doctor said a word. I could see the defect on the big screen. It was obvious that our precious baby had not fully developed. Still, I hoped I was wrong. However, as the ultrasound came to an end, the doctor said, “Well, it looks like Twin B does have Anencephaly.” I crumbled. Aaron was immediately at my side, making efforts to comfort me. All I could think was, “I want my babies!” I think I said that several times, through my sobs. Our doctor calmly told us what to expect, and to be honest, I don’t even remember now what all he was saying. I do remember him giving us the option of “selective termination.” I didn’t speak, but I shook my head as a very firm “no” through my tears. Aaron spoke for me and told the doctor it wasn’t an option. The doctor seemed relieved.

The days that followed Carys’ diagnosis are a bit of a blur. At times I felt almost numb, but then I would again feel completely consumed with sorrow. Self-destructive behaviors were tempting, but then again, I had a healthy baby boy to think of too so I never entertained those thoughts. I felt like just quitting, but in reality, it wasn’t really possible to escape. I wanted to though. An escape of some kind would have been so welcome.

I found myself thanking God for the icy, snowy weather surrounding Christmas and the weeks that followed. It gave me an excuse to not see many clients at work and some days, the roads were too bad to get to work safely anyway. As a therapist, it was hard to feel very therapeutic when the foremost feeling I was experiencing was devastation. I decided not to tell our therapeutic rehabilitation clients. Their chronic or severe mental illnesses would have made it difficult for them to process the concept that my baby, who was alive then, couldn’t survive life outside the womb. It was a difficult concept for individuals in a healthy mental state to process. The drawback to not telling them was that for the next few months, I was frequently asked by caring clients how the babies were doing. They talked about how I’d have my hands full with the twins. They asked if I knew if they were boys or girls, and the questions continued. I didn’t want to put the burden of knowing about an infant’s fatal diagnosis on them, so they didn’t know. Their questions and comments stung.

As time passed and it became more obvious that I was very much pregnant, people would begin asking me questions like, “do you know if it’s a boy or girl?” That question alone was so difficult. I know I had to have come across as being very strange sometimes as I struggled to decide how to answer.

If I answered “a boy and a girl” and said nothing else, they would go on and on about how exciting it would be to have twins, or feel compelled to tell me what a challenge I was facing. What they didn’t know was that I wanted the challenge. I wanted the challenge before I even knew there were two. I was looking forward to it. They don’t know how much that hurt. The phrase, “like putting salt in a wound” comes to mind. They had to wonder why I seemed less-than-excited. I was hurting.

If I answered that I was having one of each but then explained that my baby girl wasn’t going to make it, I felt horrible for putting that on them; almost like I’d just shamed them for asking. Talk about a kill joy. Nothing shuts down happy conversation like telling someone your baby is going to die. Not only that, but making that announcement inevitably leads to questions such as, “well, are they sure?” Those questions were usually followed by well-intentioned statements about how doctors are often wrong, or about how God can heal her. I saw the Anencephaly myself. I knew the doctors weren’t wrong. As far as God’s healing power, I fully believed in it, but I also felt like I had a very clear, “no” when I begged Him to make her whole. I’d felt like God was very clearly telling me that He had other plans for our sweet baby girl and He’d formed her just the way she was intended to be. He didn’t make a mistake.

The third option I could have chosen in my reply was that I was having a boy. It would have been easy to just avoid all talk of her and avoid some of the innocently insensitive comments that would follow. At least it sounds like it would be easy. In reality, I never could bring myself to do that. I’d been totally in love with both my babies from the moments I knew they existed. I couldn’t pretend she wasn’t there.

It’s amazing how one moment changed everything. From the time I heard the devastating words, “Baby B does have Anencephaly,” so many things no longer mattered. I’d lost the blissful ignorance of a happy, healthy pregnancy. The nursery I’d had planned out in my mind months before we were actually successful in conceiving the babies just didn’t seem to matter. I didn’t even want to walk into the room that would be the nursery. I didn’t want to order a crib. All I could think was that I should be picking out two cribs.

It seemed so wrong to plan a nursery for our baby boy but not our girl. She was with me. She was alive and kicking. What kind of a mother would ignore that and only purchase things for one baby? So for a long time, I didn’t buy anything for either. It was a constant struggle. If I allowed myself to feel excited and make preparations for Paxton, it felt like I was being unfair to Carys. If I didn’t feel excited and make preparations for Paxton because I felt like I was being unfair to Carys, I felt like I was being unfair to Paxton. I felt so torn. It felt so wrong.

Gradually, I began working on the nursery. I painted. I cried. I was thankful for the help from my mom, mother-in-law, and a good friend. It was a good distraction to not do it alone.

We had a lot of support. We frequently had messages of support from so many people. I even received a card in the mail from someone I didn’t know who had heard about our story. A photographer friend came from about 5 and a half hours away to do maternity photos for me a few weeks before the shower. She insisted. We were already seeing what kind of an impact our Carys was having on others. She got their attention without saying a word.

My family and friends also wanted to host a baby shower. Initially, I’d decided that I couldn’t have a shower. I didn’t know how it would be possible to celebrate the birth of one baby while knowing the other would not survive. I wasn’t feeling very celebratory, even though I was so thankful for both of our babies. However, I also realized that the shower was as much for them as it was for us. I know that our friends and family felt helpless, just as we did. Planning a shower was something tangible they could offer, so I relented.

It was probably the biggest, most elaborate baby shower I’ve ever seen. They went all out, planning and piecing together décor based around the theme “shower them with love.” They decorated with spring flowers and umbrellas (rain had become a theme of the pregnancy; I’d even had some of the maternity photos done with an umbrella). I found it interesting that it seemed every area and time period of my life was represented at the shower. There were coworkers and friends from grade school, high school, college, and grad school, as well as members of our church family and friends from the church district I’d known over t he years. They all came together to “shower us with love.” How humbling. Still, I was amazed at the impact our babies were having on others before their little faces had even been seen.

The evening after the shower, as I was leaving church, Carys moved. She moved often throughout the pregnancy, but this time, she REALLY moved. My mom could see her move from across the room. My sister-in-law was standing next to me and was able to feel Carys’ big move. I’m not sure what Carys was doing in there, but I joked and said whatever it was, she did it with emphasis. My belly was sore for the rest of the evening. She was certainly making her presence known!

Nine days later, on Monday, April 18th, we went in for our 34 week visit and ultrasound. At one point during the ultrasound, the tech asked, “are you seeing what I’m seeing??” We were looking at a 4D ultrasound image that looked like Carys was kissing her brother on the forehead. It was absolutely precious. Those ended up being the last ultrasound pictures we got of them. When the exam was over, my doctor calmly told me he was sending me over to Labor and Delivery. I was already dilated to about 4 cm and the monitors soon detected contractions that I hadn’t been feeling. There had been one incident a few days before that I had a dull ache in my lower back and wondered if I was having back labor. I left work early that day and went home, but after a nap I felt a lot better and didn’t feel the ache again.

A flood of emotions washed over me as we walked through the hospital to Labor and Delivery. We had just learned a few days before that in order for Carys to be eligible for tissue donation, we had to make it to 36 weeks. I was so disappointed knowing that we weren’t going to make it that long. We had already decided to donate Carys’ heart valves after she went to Heaven, in hopes that we could help another family keep their baby. I was hurt and disappointed. I was excited to meet my babies face to face and scared about the unknown. I was counting on God to give us what we needed when we needed it, but I dreaded having to say goodbye to Carys.

I was given shots of a steroid to help with lung development and I felt a peace about Paxton’s well-being. The contractions (that I still wasn’t really feeling at 5 cm) were managed through the IV meds as well. When it became apparent that I wouldn’t be going home before the twins came, the C-section was scheduled for that Thursday, the 21st. Those few days were filled with monitors and little sleep.

The evening before the twins were born, my 6 week old nephew was admitted to the same hospital with RSV and was later transferred to a nearby hospital with a Pediatric Intensive Care Unit. We were all at a breaking point. My doctor came in after midnight to pray with us. Sometime after that, one of the nurses came in to replace my IV after it had started to infiltrate. After 2 attempts and a blown vein in each hand, she called nurses from the NICU to come over and start an IV. They blew another vein in my hand before putting the IV in the bend of my right arm.

I was exhausted and hurting, physically and emotionally. I was already fighting tears and at that moment, all I could think about was that I couldn’t even bend my arm to hold my babies with what little time I was going to have. I sobbed. One of the nurses, trying to be helpful, asked me something about the babies. I just sobbed even harder, I couldn’t speak.

I didn’t get to experience the “normal” excitement of a new mommy waiting to meet her baby. While facing the whole process may seem somewhat scary under typical circumstances, all of the emotions that had been jostling around in my head for the past 5 months or so seemed to come rushing back full force in that one moment. The initial shock and panic of the diagnosis, the sheer desperation of my prayers from the bathroom floor, the dread of saying goodbye, the utter heartbreak of all the firsts I wouldn’t get to experience with her, the hurt over watching moms who didn’t seem to care about their children, the guilt over the joy robbed from Paxton’s existence, the joy of having both of them with me, the dread of the loneliness when I could no longer carry them with me… so many emotions just came back full force, all at once. I felt bad for the nurses, I knew they had to feel helpless. I felt heartbroken for my husband, who had been feeling as helpless as I was all along too. I knew it was hard for him to see me break down like that, on top of his own grief, but it was not in my control. I couldn’t fix it- Any of it.

The nurses offered to call my doctor and ask for something to help me sleep. I wouldn’t let them call him. He’d been in our hospital room around 4 am the morning before, and was back after midnight to check on us before going home. My C-section was scheduled for early that morning. I knew he had to be exhausted. I eventually settled into some degree of sleep. My nurse put off strapping the monitor back on, knowing how much I needed what sleep I could get. I woke up the next morning to the hustle and bustle of surgery prep. My family was all there before they took me back. I didn’t feel as emotionally out of control as I had a few hours before, but I just felt weak. I was calmer for the most part.

Aaron stayed by my side every moment he was allowed. He was so attentive and loving to the babies and me. There were a few more tears as time grew closer, but they were much quieter now. I was taken into the operating room and the Anesthesiologist administered the spinal. As the lower half of my body grew numb and my husband held my hand, it seemed like there was a peace that just poured into the room. I’d been counting on it. I trusted that God would send the Holy Spirit to comfort us, and He did.

Paxton was born at 8:19 am. The sound of him crying was breathtakingly beautiful. Our doctor held him up for me to see him. He was perfect. He was taken to be cleaned up before being moved to the NICU for evaluation. Two minutes later, with a gush of the abundant amniotic fluid that had filled her sac, Carys was born. It wasn’t long until I heard, “she’s trying to cry.” She was quickly cleaned up and laid on my chest as I was being stitched up again. She was beautiful. It may sound strange to anyone who hasn’t been there, but she was perfect.

As we stared in awe into the face of our baby girl, she squeaked and grunted and made little cooing noises. I didn’t expect her to be capable of making any noises. With proud tears, Aaron was allowed to hold both of the babies for a quick photograph before Paxton was taken out of the room. We continued to focus on every little detail of Carys. She had hiccups. She tightly gripped our little fingers. We could see a little bit of dark red hair at the back of her head and she had long red eyelashes. She had chubby little cheeks and a double chin. Her chubby hands had tiny dimples at the knuckles. I later pondered how anything on a 3 lb baby could possibly seem chubby.

We were soon taken to a recovery room, and then made a brief visit to the NICU where I was so thankful for the opportunity to hold both of my babies for a few photographs. I was elated. I didn’t think I’d have an opportunity to hold both of my babies alive. Paxton fussed for a little bit when he was picked up, but as soon as he was laid in my arms, next to his sister, he calmed down and looked so peaceful. I will always cherish that moment.

It wasn’t long before Carys was able to meet both sets of grandparents and some aunts and uncles. Our minister came and we had a brief dedication service. I hadn’t expected to have enough time for that either. I’d given Carys back to God a long time before that moment, but there was something so special about formally dedicating her to God’s will and accepting God’s plan for her life.

We spent the better part of that day with Carys in our arms. I was miserably tired from sleep deprivation and the morphine after the surgery but I wouldn’t let myself fall asleep because I didn’t want to miss a moment of her life. I recorded audio clips of her little noises to my phone. We talked to her and cuddled her. We told her about Heaven and the loved ones we were excited for her to meet. We told her how thankful we were for her and how much we loved her. We said it was okay for her to go home to Heaven whenever she needed to. Aaron read some passages from the Bible to her about Heaven. I wanted to sing to her and for the first time since her diagnosis, I was able to sing to her without having to stop because I was crying. The first song that came to mind was the hymn, “It is Well,” by Horatio G. Spafford.

“When peace like a river attendeth my way;
when sorrows like sea billows roll;
Whatever my lot,
thou hast taught me to say,
it is well,
it is well with my soul.”


Carys lived very peacefully for 7 hours and 13 minutes. She passed on to Heaven from her spot nestled in my arms with her daddy right beside us. Our nurse listened and told us she could no longer hear her little heartbeat. She was gone.

From the time Carys was diagnosed, many people prayed for a miracle for her. They openly prayed for her healing; that she would be made whole. As it turned out, Carys was our miracle. She was perfectly made. God intentionally and lovingly created her. Those precious hours we spent with Carys after she was born gave us a glimpse into Heaven. Though I didn’t see it with my physical eyes, the peace and love we felt and knew while she was in our arms were unmistakable. Heaven felt so real and so close, it was as if we could reach out and touch it. Even when Carys left this earth, she didn’t feel very far away.

Our experience with anencephaly has been the most beautiful, painful experience we have ever had. There have been moments I have wondered what would have happened if we had taken the doctor up on his offer when we were given the option of “selective termination.” I have never regretted our decision to continue on with the pregnancy with both babies. Carys’ diagnosis did not change our love for her aside from growing it deeper. I wouldn’t trade anything on this earth for the time we had with Carys.

Though Carys had a fatal defect and was not capable of surviving in this world, she definitely had a purpose here. Our little miracle changed our lives. I no longer fear death as I once did. She brought us closer to Heaven and taught us more about peace and love than we could have ever imagined. Incidentally, that’s what Paxton and Carys’ names mean. Peace and Love, in that order. Paxton’s middle name, Cole, means “Victory of the People.” Carys’ middle name, Rainn, means “abundant blessings from above.”

We know that the story of Paxton and Carys Rainn isn’t finished yet. Carys had a purpose and a legacy that will live much longer than her earthly body did. Paxton will grow up knowing about his twin sister and the impact she made on the world. He’ll know how grateful we are to have him here with us, and the part he played in her story. Even though we’ve experienced grief and sorrow more deeply than we’d ever known possible, we have a new sense of hope. We have come through this experience with a clearer purpose for our own lives and want to share the story of our babies with anyone who will listen. There is still so much left to be said about the miracles that are Paxton Cole and Carys Rainn.

Others may look at our story from the outside and see only tragedy. We look at our story, through our heartbreak, and truly see the abundant blessings from above. Every time it rains, we are now reminded of our daughter and the beauty that comes after the rain. The rain makes everything grow more beautifully. It’s also by the rain that we see rainbows, which remind us of God’s promises. I now realize that rainbows also give us a glimpse of the splendors of Heaven. When I am blessed to see a rainbow now, I think of the jewels in the walls of the New Jerusalem, reflected by the light of God’s glory, and I am reminded of our glimpse of Heaven the day our babies were born. The way I view life and this world is so much different now than it once was. Indeed, there is such a true, undeniable beauty that comes after the Rainn.

 

Keri is writing a blog as well. Carys and Paxton's story is available in a book

 

Last updated September 16, 2016