Beautiful words...

I just got off the phone with a friend of mine who Chad and I met when first moving down to North Carolina. She and her husband have always been very gracious and friendly to us. This woman is such an inspiration. I knew of her story through a mutual friend. She and her husband lost a child after knowing and loving him for four months. When I had first learned this a few years back my heart broke for them. We attended parties and backyard barbecues and both her and her husband seemed to be the happiest ones there. I couldn’t help but wonder, “Where does she find the strength to go on after going through such an ordeal?” Well, what a beautiful conversation we just had. I have learned more about this woman in the past few minutes than I have in the past few years. She let me know that grief would be around for a while and that not everyone “gets it”. She also told me to think of myself as having split personalities. On one side is the cheery, happy girl I always am and on the other side I have this grief stricken person I will now be carrying with me for the rest of my life. There will be times when grief wants to come out, but it’s up to my cheery side to say, “back off right now” and put that person in it’s place. When it’s the appropriate time and place then I can let this grief persona make it’s appearance. I can then cry, scream, and feel what I am feeling and that’s okay. She also told me that when she was getting through the roughest part after losing her baby, she would divide her heart up into little rooms. She would put all that grief and guilt she felt into one of those tiny rooms and shut the door. “Every now and then,” she said, “you will go and visit in that room for a little while and remember, cry and feel.” Then she told me that I would have to shut that door again and go on with my life. I would never forget but laughing and smiling were not things that should make me feel guilty. She said, “I know right now it’s not easy to hear that, but eventually you will get there.” Ah she gives me hope. Hope for the day that this gets easier. The place that I am in right now are days filled with guilt. I feel guilty when I laugh, smile, dance with Claire, etc. I find myself stopping suddenly or realizing the next day that I had way too much fun and that my baby would think I forgot about him or didn’t care. It’s an awful, terrible, dark place to be in and I want out! I want to smile again and not feel shame for doing so. I am going to take the advice of my friend and build those rooms in my heart and start working on shutting the door every now and then. Tomorrow I meet with a support group called “Empty Arms”. It’s a group for couples that have had stillbirths or deaths of a baby shortly after birth. Chad is unable to go and I know he feels awful for not being there to support me. I wasn’t going to go but this morning I woke up and thought...”either I show courage and go by myself or I don’t go at all.” Hmmmm...what to do? Well, I know me. I know that in a month from now, or two months from now, or when June comes and I have to be surrounded by all the new babies my friends are having and Christian’s own due date on June 7th, I will regret not going. It’s my opportunity to share my story and hear other’s stories. To feel a connection with other couples that have recently been in the same dark turmoil we had just gone through. So I am going. I am fighting this anxiety and going to endure the hurt and pain of others and let them know that I understand. Hopefully I find yet another support system to help me through this as well as become a support system for other mommies too.

Thank You

I want to thank everyone for the prayers and friendships which you have all blessed us with. I was nervous to have shared my first post with everyone, but the warm and caring responses I’ve received in the past few days have been overwhelming and I am so fortunate to know all of you. You have provided me with a sense of strength and you’ll never know how much it means to me. Thank you. As many of you might know we have been waiting for the results back from the amnio combined with the x-rays and tests done on Christian. These results will determine exactly the type of Skeletal Dysplasia he had. As I explained in my original post, the team of doctors and geneticists are pretty confident the results will read positive for Thanatophoric Dysplasia. This is the most common type of lethal dysplasia. I need this diagnosis. I need it to be lethal. I know that may sound terrible but I am still holding onto the feelings of doubt that anything was wrong. That Christian was healthy and he would have caught up in growth and the doctors would have seen it in a future ultrasound and said, “Wow he’s a little miracle.” Then I wouldn’t still be kicking myself for not taking my prenatal vitamins enough, or maybe I was running too long and too hard, or maybe it’s because I was taking Zofran for my morning sickness...ugh...I could go on forever. I can hear Chad telling me right now, “Meg the doctors said YOU DIDN’T CAUSE THIS!” Deep down I know it wasn’t me, but I need to get rid of these guilty feelings. If the diagnosis comes back lethal then I will finally accept that it was nothing I did or didn’t do to cause Christian’s fate. They say that Skeletal Dysplasia happens in 1 in 50,000 pregnancies. Crazy! We still shake our heads in disbelief. The geneticist told us “it’s like getting hit by lightning.” This is nothing that Chad or I carry a gene for. It can happen to anyone. The amnio results come back next week so the waiting game is almost over. They will also talk with us about what this means for future pregnancies. I can honestly say that pregnancy for me is most likely ruined forever. There won’t be any jumping up and down in the bathroom after getting two pink lines. There won’t be that excitement of walking into our 20 week ultrasound. I will be a nervous mess! I know I won’t relax until I have that baby in my arms at the end of 9 months. Then maybe I will take a deep breath. Claire has swimming lessons on Saturday mornings down at the YMCA. I feel like I was just shopping for a new bathing suit that would cover the bump. I had been going with her every Saturday up until that weekend we found out there was a problem at our 20 week ultrasound. Chad had been taking her while I physically recovered. This morning was my first time back in the water with Claire since that awful first weekend. Walking into the pool area, Claire and her little friends were starting their normal conversations when out of the blue she started saying, “my new baby is going to be a boy,” “my new baby is gonna swim with me in Nana’s pool.” She hasn’t mentioned the baby in a while and it hurts so much when she does. We haven’t discussed anything that has happened in front of her. As far as she knows she still thinks I am having a baby. I feel sorry for her. She has no concept of time, so she doesn’t know that a baby comes in 9 months. This is why we haven’t told her about Christian. It’ll be like Christmas. We talked about Christmas for months before it came and she still doesn’t understand that it happened and now we have to wait another year before it comes again. Getting into the water brought with it a flood of emotions. Last time I was in this pool I was swimming with both of my babies. As I fought back tears during Miss Jackie’s “Wheels on the Bus” song, Claire turned around and splashed me right in the face and giggled that beautiful little giggle she has. A giggle that has always snapped me out of whatever mood I’m in. Maybe it was Christian telling his big sister to splash me. I’m laughing now at the thought of it. Like they are working as a team to keep my spirits high. Immediately the lump in my throat went away and I found myself singing about the babies on the bus saying “whaaa whaaa whaaa”, Claire’s favorite part of the song. Except for that moment in the pool, I haven’t cried today. Could today be the first day that I don’t cry? Maybe. The day isn’t over yet but when I am feeling down I will re-read the prayers and comforting words from all my family and friends. The comments on my blog, the facebook posts and private messages have made us feel so loved. Despite our 1 in 50,000 statistic, we are one lucky family. Thank you again.

Our Story

It’s hard to even believe what has happened in the past few weeks but I’ve been told it could be therapeutic to share my story. Since this nightmare began I have found myself constantly on the internet searching and reading the stories of families who have lost babies, and it's the stories of those strong women that are helping me to understand and begin to accept that I am now on a journey to find peace, so here it goes. It was a typical early Tuesday morning in September of 2011, my husband, Chad, kissed me goodbye as he travels out of state on a weekly basis for work. We had been trying to conceive for a few months with no luck. Every test I took came back negative and I was getting frustrated. That morning, after he left, I was expecting my period and I thought to myself, I’m going to take the last test in the box and if it was negative I was done stressing. I realized that when it’s meant to be it will be. A few minutes later the test read positive and I was over joyed. There I was standing in my bathroom all by myself just giggling at the thought of now having another little munchkin to run around the house. I didn’t want to tell Chad over the phone so I decided to wait until Thursday night when he got home. My two year old, Claire and I would plan a special way to tell him. I remember walking around that day with a permanent smile on my face. Claire and I went and got a “big sister” shirt for her to wear and we waited until Thursday. When Claire ran out with the shirt on I video taped my husband’s reaction and I thought it was so wonderful that I could capture that moment and save it forever. This new baby would grow up and watch how excited his or her father was at the thought of adding to our already perfect family. How I wish I could still feel the excitement of that day. A few weeks passed and the dreaded morning sickness made it’s arrival. I endured round the clock nausea for the next 3 1/2 months. It was just coming to an end right before our exciting 20 week ultrasound and I felt so proud of myself that I had gotten through what is, for me, the worst part of being pregnant. I had just sent out an email to my mother in law the day before letting her know I was half way through and I couldn't believe it was going so fast. I was living each day dreaming of what June would bring. Claire's birthday is at the end of May and she has a dance recital right around the baby's due date. I was stressing about how I was going to have a bunch of family in town for both events and have a baby on top of all the excitement. I look back now and can't believe I took for granted having a healthy pregnancy the first time around. Little did I know that planning a birthday party and making sure I didn't miss a dance recital were the least of my problems. So here we were, just the three of us, walking into the ultrasound room so excited to see our new little addition and to show Claire her brother or sister. We wanted to keep the gender of the baby a secret and the techs promised to do so. Halfway through the ultrasound, which we thought was going great, one of the techs left the room and walked back in with a doctor. Immediately I knew something wasn’t right. She sat down and told us that everything looked great except the baby’s long bones were measuring about four weeks behind. I instantly lost it. I started crying and my husband asked her what that even meant. She said she honestly didn’t know and we were referred to a high risk specialist. Now this appointment was on a Friday and we couldn’t get an appointment with the high risk doctor until Monday. First lesson we learned was never to schedule an ultrasound on a Friday. That weekend was awful for us. The second lesson we learned was that Google could be a nightmare when you get news regarding the health of your baby. We tortured ourselves with terms such as dwarfism, down syndrome, etc. Monday finally arrived and we headed to our appointment with the hopes that the OBGYN and the ultrasound techs were wrong. The doctor spent a long time looking at the ultrasound and finally told us with almost 100 percent certainty that the baby would have a form of Skeletal Displasia. Now there are over 200 types of Skeletal Displasias, some even being lethal. The doctor thought it looked like the non-lethal Achondroplasia, the most common type of dwarfism. Our worst nightmare was coming true. I was a mess and couldn’t even speak. Chad became my rock and asked questions, took notes and tried to calm me down. I just couldn’t imagine that the baby I had visualized to be so perfect was now being diagnosed with Skeletal Displasia. A genetic counselor gave us the option of having an amnio done in order to narrow down what type of Displasia we might be looking at and whether or not it was a lethal one. We agreed and the next day we would return to have an amnio done. The weather had been nasty since our original ultrasound that past Friday. It didn't fail to remain gloomy on this day either. I kept hoping I would wake up and this would all be a nightmare. I remember showering that night and crying so hard that it hurt from the deepest part of my stomach. I talked to the baby and asked him to grow. Please grow. Please grow, catch up. The doctors are wrong. Somewhere in the midst of all that hurt I wouldn't believe it was true. I know myself, Chad and Claire. We are all stubborn, strong and determined. I felt as though this child would be no different. He or she would prove these doctors wrong. The next day brought the same gloomy weather, fitting the mood perfectly. We arrived at the doctor's office and they brought us back and prepared for the amnio. The baby's heart rate was 153 bpm. I squeezed Chad's hand and looked into his eyes. I had googled so much about amnio's the night before that once again I tortured myself with horror stories. Chad kept telling me "You got this, you can do this." As the doctor removed the amnio needle from my stomach the baby’s heart rate dropped significantly. Those few minutes felt like an eternity as the doctor monitored my baby’s heart beat. He made me roll on my left side to see if that would bring it back. Finally it had returned to normal and the doctor himself was a bit shocked that it had dropped so low. He searched and searched for the reasoning behind the low heart rate. Finally he noticed that where the needle had entered my stomach there was a little bleeding and the blood had dripped on top of the umbilical cord and while it was clotting it had stopped the blood flow to the baby. It seemed everything was okay and we were then presented with our options. We could wait four weeks for the amnio and continue the pregnancy regardless of the results or we could terminate the pregnancy either before or after the results of the amnio. I felt such defeat. What had I done wrong? What lesson was God trying to teach me? Typing this I am still asking myself these questions. The doctors have all assured me that there is nothing I did or could have done to change this. This “new mutation” of a gene caused this and I had to accept that. I had to accept that the doctors, nurses, ultrasound techs and genetic counselors were all giving me almost 100 percent certainties that this baby was not healthy. On the drive home I held my stomach tight. The baby was very calm and I remember saying to Chad there was very little movement. We figured he or she had been through a lot and was resting. That night I still hadn’t felt the baby kick and the next morning, still no normal movements. We went to my OBGYN just to be sure. On the drive there I just knew in my heart that God had already taken this baby to heaven. As the ultrasound proved, I was right. Chad and I walked out of that office, both crying and holding each other. Since that previous Friday we had felt that each day brought more heartache and rain. Except this day. This day was different. We opened the doors and walked outside and the sun was shining so bright and so warm. Right away Chad said "Meg look at this weather. It's the first day since all of this began that the weather has been nice." He was at peace. I felt happy for him but sad for me. I knew Chad was heartbroken especially because we had learned it was a little boy that we lost. I will admit, that day I did feel some peace, but I couldn't believe that my life had changed so dramatically in just a few days and even though I am still trying to accept that all of this really did happen and I’m not going to wake up from the worst nightmare of my life, I am trying to look at the positive side of things. I now have a beautiful little boy, who we have named Christian, in heaven watching and protecting us every day. We headed down to Charlotte and I was admitted to the hospital at 7:30 am. Checking in downstairs, a woman at the desk heard my husband say "Labor and Delivery" and she immediately said "Oh how exciting, is this your first child?" I was at a loss for words. Chad instantly snapped and said, "no it's a miscarriage." The woman was embarrassed and I calmed Chad down and told the woman it was okay. It was an honest mistake. Walking onto the labor and delivery floor I felt so confused. Here I was about to have a baby but I couldn't take him home. Our first nurse Alison set us up in a beautiful room that had a white rose on the door to let those entering know that our story did not have a happy ending. I was induced that morning and we found ourselves waiting and waiting. The team of nurses and our doctor were unbelievable. So caring and so committed to making us comfortable. I think about them every day. The nurse that had been on duty with us through this whole ordeal was Julia. She is a beautiful soul. I felt her compassion just by the way she looked at us. I plan to write her a letter and explain to her how much she meant to us that night and how much she will mean to us forever. She has found her calling in life and anyone that comes in contact with her should consider themselves truly blessed. I feel as though God gave us Julia to help us through this ordeal. The doctor told me I could get an epidural at any time. That night the contractions started and I chose not to get the epidural right away. Some may say I was crazy for wanting to have labor pains and not receive a prize at the end. I had already accepted there was no prize. With Claire, I only got to three centimeters and had to have a c-section. Up until that Friday before I had been reading and researching about having a VBAC (Vaginal Birth After Cesarean) with this baby. I was determined to still have my VBAC. Even though it wasn't the ideal labor and delivery I had expected, I was going to prove to myself that I could get past three centimeters. The contractions got intense and Chad was my hero. He stood next to my bed for four straight hours as I battled through. I would sit up, vomit, and then get ready for the next one. Finally the doctor had told me I was at 6 centimeters and I felt proud. I decided then to get the epidural. I had proven to myself that I could do it. Plus I wanted to have that moment in this pregnancy where I fought to deliver this baby. Like I said, I know it might sound crazy but I don't regret any of it. That morning, at 3:47 a.m. I delivered Christian. Holding him was so bittersweet. His arms and legs were short but so cute and little. In my eyes he was perfect. So small, yet so developed. He was the cutest thing I had ever seen. They brought him to us in a beautiful crochet blanket and a little blue hat. How could I not know something was wrong these past four and half months?! That next morning we were discharged and instead of leaving with Christian I left with a small purple box filled with his blanket, little blue hat, pictures, a cast of his little feet, and a tape measure they marked with his measurements. Christian was 9 1/2 inches long and weighed 1 lb 1 oz. I cried as the nurse pushed my wheelchair past rooms with crying babies and other soon to be moms in labor. Another sad moment came as we were winding through the halls of the hospital making our way to the exit. A woman security guard saw the nurse about to push me through two big double doors, she came running over and said "Is this a white rose?" The nurse nodded and she redirected us out another way. A white rose. That's who I was. Who I am. What was behind those doors? I'm glad I didn't see, but I've been envious of what was there. How can I be envious of something I didn't know about? I picture a room filled with the scent of new babies and proud mommies and daddies. I felt all alone. Yes I had Chad and he's been more than I could ever ask for in a husband and best friend. But I still felt alone. I still feel as though no one understands. Yes they are sad and grieving however, I can't help but feel as though my pain is worse. A radiologist and a pediatric geneticist took x-rays of Christian and they believe that the Skeletal Displasia Christian had was Thanatophoric Displasia, the most common lethal Skeletal Displasia. Christian wasn’t surviving this. Even though the doctor isn’t really sure how it happened, Christian died because of complications with the amnio. That is what it says on his death certificate. However, my husband and I have put our complete faith in the fact that Christian wasn’t healthy and God decided to take him early. We are coping, some days better than others. My sweet Claire is the best medicine. She gets me through the days I wake up and feel as though I can’t breathe. Our family will always be one beautiful smile short but we know he’s always with us and he will forever be a part of who I am. I love you my sweet little boy.