Mom to Stella Grace
Born at 23 weeks + 4 Days
December 23rd, 2010
Asheville, North Carolina
My husband, Trey, and I were married August 8, 1998 after almost 8 years of dating. I think we both knew deep down we wanted to get married long before the question was ever popped, but we weren’t certain we wanted to commit to such a “grown up” act. Over the years we’ve experienced many ups and downs, like watching our dogs die from cancer, him suddenly developing Epilepsy and me battling my own health issues with undiagnosed Celiac Disease, but for the most part we counted ourselves lucky living a charmed life.
The topic of children rarely, if ever, came up until sometime in 2007. I was spending many hours volunteering for a dog rescue organization and Trey was beginning to come to terms with his Epilepsy when he broached the idea of adding children to our lives. I had been ready for kids many years before, however my body was weak and I spent a great deal of my days being sick, so I didn’t feel I would be able to handle a pregnancy well and put off the idea hoping one day we would discover the true origins behind my mysterious illness. Since Trey had never seemed very interested in kids I was a little taken aback and wondered if he truly meant what he was suggesting, so I gave him some time to ponder the idea a little more while I began asking my gynecologist a million questions about preparing my aging body for pregnancy.
By the time 2009 rolled around I knew that if we were going to begin our lives as parents several changes needed to be made, primarily me resigning from my volunteer position with in the rescue so I would have more time to focus on us as a couple and preparing for a child. I also began prenatal vitamins, cut out the caffeine, purchased pregnancy books and limited myself to only drinking a small amount of wine on special occasions. We decided to schedule a few fun weekend getaways as hopefully our last chances to travel with out a child and see some of our favorite musicians as they traveled through town. Sort of a last hurrah since we knew our lives were about to change forever. Of course we naively thought they were going to change for the better.
We began trying to conceive after my gynecologist gave us the green light during my last annual exam in June. I started keeping track of my cycle and figured out my ovulation times so we would know quickly if we were having any troubles with conception. Our 12th Anniversary was approaching, but since the 8th was a Sunday and my favorite restaurant is closed on Sundays, we decided to celebrate both Saturday and Sunday. On the morning of August 7th I woke earlier than my husband, went to the restroom and decided to take a pregnancy test. A faded blue + sign quickly appeared! I don’t know why, but I was shocked! I looked in the mirror to see a big, bright smile on my face and the excitement in me built. Of course I was a little nervous too because now it was all real and not just talk. I took the test and crept next to my husband still in bed and tried to wake him gently. Trey tried to roll over and said, “I’m sleeping!” That is when I responded, “I know Honey, but don’t you want to see what I made you for our Anniversary? I worked really hard and made it with love!” He rolled over and I placed the positive pregnancy test in front of him. I think it took him a few seconds to really wake up and realize what I had in my hand, but more importantly what it really meant. Once Trey fully realized what was going on he kept saying, “WOW!” and wondering, “Should you take another one?” while I couldn’t stop laughing and smiling. We had previously made plans to go to an Arts and Crafts Fair that day and then out for a special dinner, but before we left for the day Trey gave me a beautiful necklace with an image of budding tree pendant. I immediately cherished it and we proceeded to have one of the most wonderful days of my life: full of love, excitement, optimism and hope.
I was extremely excited to be pregnant, but nervous about sharing our good news with family and friends considering all that can go wrong in the first 12 weeks. Trey reluctantly agreed we would keep this news to ourselves until after our ultrasound and we had proof of the little bean growing. It felt extremely special to be sharing this incredible secret together and our bond as a couple expanded tremendously and it’s a now a time I wish I could go back to and relive over and over again. On September 15th we had our first meeting with our Obstetrician and went over what kinds of testing we may be interested in and what we would want to do if those results should come back with something, but most importantly we got our fist meeting with ‘Lil Boo! At 9 weeks old ‘Lil Boo was busy dancing all around … our baby had soul! Both of us where smiling ear to ear with happiness and Trey finally realized there really was a baby growing in my belly. Everything was going fairly well. I was tired a lot, but also grateful I wasn’t spending much time being sick to my stomach. Our 14 week appointment everything seemed standard and straight forward with the nurse checking my weight and blood pressure. Then the Dr. took us back to our exam room and used the Doppler to listen to ‘Lil Boo’s heartbeat. AMAZING!! I couldn’t help but smile and giggle, but I tried to hold the laughter back since it was causing interference and disturbing the most wonderful sound I’ve ever heard.
I was scheduled for a Quad Screening in early November as a standard precaution. I had been feeling uneasy about the appointment from the time it was scheduled, but my husband kept telling me there was nothing to worry about and the statistic showed it was unlikely anything was wrong. All I knew was that I would feel much better once those results came back clear. Unfortunately that wasn’t the case! We where scheduled to see a Maternal – Fetal Specialist and a Genetics Counselor for a targeted ultrasound because the Quad Screen results showed ‘Lil Boo had an increased risk for Downs Syndrome. The average risk ratio for a woman my age is 1:114, but my results showed my risk at 1:68. Trey, being the logical person, tried to reassure me that only meant our baby had a 1.47% chance of having Downs, but that didn’t help ease my anxiety and fears that our baby would always struggle with health and developmental issues. They would never have the wonderful life I had been planning and dreaming about.
At our targeted ultrasound on November 18th things went from bad to worse. We choose not to perform an amniocentesis because it wasn’t going to change how we handled the pregnancy and we didn’t want to add any unnecessary risks to ‘Lil Boo. The ultrasound revealed a congenital heart defect. Our sweet little baby had a hole in the center of her heart – Atrioventricular Canal Defect. We now needed to be followed by a Pediatric Cardiologist for an echocardiogram to determine the severity of the defect and if we would need to plan our delivery at a specialty hospital. They checked all the markers for Downs, but other than the heart defect the only other things that raised their suspicions of Downs was her upper arms were shorter than expected at 18 weeks and the baby size was lagging about 10 days behind scheduled. The Maternal – Fetal Specialist and Genetic Counselor were both concerned ‘Lil Boo may be affected by a placental issue due to the hCG ratio results from the Quad Screen. With all the new information the Dr. shifted our risk for Downs up to 50%. I felt like she had just stabbed a hole in my heart!! I could barely breathe through the weight on my chest and all the tears. How could something so awful be happening to our sweet, innocent baby? How could everything go so horribly wrong? Aren’t pregnancies supposed to be the happiest and most hopeful times of your lives? We did everything we were supposed to do to help ensure a healthy baby, but our best efforts weren’t good enough! I couldn’t figure out how to cope with this terrible news or how we were supposed to move forward and look to the future when our baby’s life was already in danger. I didn’t want to eat, couldn’t sleep with out nightmares and didn’t want to talk to anyone. It was a horribly sad and lonely Thanksgiving!
After discovering all the problems with my pregnancy and that our baby wasn’t healthy my Maternal – Fetal Specialist and OB decided I needed to be followed more closely, so I was scheduled for ultrasounds every 3 weeks to monitor the baby’s growth as well as our appointment with the Pediatric Cardiologist. Those weeks between appointments were agonizing, but at the same time I really didn’t want to hear what new negative information they might have with each visit. On December 3rd we met the Cardiologist for our baby’s first echocardiogram. We told him that our baby was suspected to have Downs and he told us he began his whole career as a cardiologist due to his love of Downs children and their wonderful personalities. He was kind and thorough and we learned a lot about ‘Lil Boo’s heart condition from him. We immediately clicked with him and felt a small sense of relief when he told us the ‘Lil Boo had a “highly operable” condition and surgery wouldn’t likely need to occur until 3 – 5 months of age, so we wouldn’t need to travel for the delivery. We also learned that this type of surgery was only required once, but may need a 2nd follow up surgery as the child grows older to replace any possible leaky valves. I couldn’t bare the thought of my baby needing to have surgery, but if it was going to be necessary for survival at least he was making it seem like it was not he worst case heart defect scenario.
Finally in between my November to December OB appointments I had begun to gain some weight! I was secretly hoping that if I would just begin to pack on those pregnancy pounds than ‘Lil Boo would also begin growing and maybe, just maybe, surprise all the Drs. by catching up to normal gestational size. Unfortunately that wasn’t the case. While I packed on 8 lbs. in 3 weeks ‘Lil Boo’s growth lagged further behind closer to 14 days. The specialist warned us this was very bad news for our baby and we would soon need to consider whether or not the baby had better chances of survival out of the womb rather than inside me. She then added we may suffer a fetal demise before we have a chance to make the decision. My heart sunk and I almost choked on the lump suddenly formed in my throat. I couldn’t believe the words I was hearing and looked to Trey in hopes that maybe I misunderstood, but his face told me I was clearly hearing the worst words possible. There was nothing that could be done to help our baby! Before we finished our appointment I asked the Dr. to please look back over the ultrasound and see if she could identify the sex of our baby, since in the previous appointments ‘Lil Boo was so active, bouncing and dancing all around while sitting with the umbilical cord between the legs no one wanted to commit on the sex. Just as I secretly dreamed and hoped ‘Lil Boo was a girl, but she wouldn’t have the fairytale life I had dreamed for her.
When we got back home I pulled out the pregnancy guide book I had been reading, “The Mother of all Pregnancy Books” and immediately started searching through the index and table of contents for anything that might relate to our situation with ‘Lil Boo. I found the chapter labeled “When Pregnancy Isn’t Perfect” trying to mentally prepare myself for an extremely premature baby, but I had this sense that if I was as prepared as I could possibly be then our little girl would surprise everyone by catching up on her growth and she would be ok. After all, I knew my little girl had to be just as stubborn, if not more, than me and would be a fighter. The more I read about all the complications the more I prayed our little girl would be spared! But, realistically I knew with her added complication of the heart defect and possible Downs the chances of her being able to fight through weren’t good. With my heart broken in pieces I tried to concentrate on all the things I could control that would help our “Lil Boo: I made sure I was eating healthy foods regularly, even though I had no appetite, plenty of sleep and, as difficult as it was, trying to stay as upbeat and positive as possible.
A little more than a week later, on the weekend I turned 23 weeks, I became very sick. At first I thought it was something I had eaten considering I’m gluten intolerant. The pain and nausea felt very similar to a gluten reaction, though everything felt a little higher up in my abdomen than usual. I thought, “Hey, I’m pregnant! There’s a baby shifting everything upward! I’ll just sleep this off.” I felt 100% better by Sunday and even enjoyed visiting with some out of town family, so I was relieved that whatever had made me sick was apparently nothing serious and ‘Lil Boo was just fine. On Monday everything changed for the worse! I was suffering extreme chest pains that penetrated through my body and left my back feeling bruised between my shoulder blades and wrapped around my right arm. I feared I was having a heart attack, so we called my OB who had us meet her at the hospital right away. After the nurses checked out my urine, blood pressure and my blood was sent off to the lab my OB returned with the horrible news that I was suffering from HELLP syndrome and even though our baby wasn’t viable at 23 weeks, especially considering she was now 3 weeks behind in growth, they needed to start me on medication and induce me immediately. She explained that my liver functions were extremely high and my blood platelets were very, very low setting me up for possible liver or brain hemorrhaging, or seizures and the only way to save me was to “take” my baby.
My induction began just before 1am on December 21st. They had gotten me situated in a room on the Labor and Delivery floor and immediately hooked me up to a magnesium sulfate drip before my OB came up to perform an exam and begin inducing with cytotec. She told us there was no one of knowing how long it would take to induce me, but an OB would be coming in at least twice a day and hopefully we would deliver in a couple of days. Unfortunately the induction didn’t go as smoothly as planned, so I had several days in the hospital to process all that was happening and cry for the loss of my soon to be born baby girl. So with a fever spiking off and on all Tuesday evening after receiving my 3rd cytotec dose my heart was being ripped to shreds knowing my daughter would never survive once she was born. Agonizing over the irony of spending most of my life trying to avoid getting pregnant, then hoping I could become pregnant, hoping and praying I wouldn’t loose the baby to a miscarriage once I got pregnant, being thankful I had no spotting during pregnancy and praying I wouldn’t go in to premature labor, to now suddenly want my baby born before she was ready! I didn’t want her to be born prematurely! The OB’s never asked me what I wanted to do! I was told that with HELLP I was now their #1 priority and saving my life was their primary focus! I wasn’t given any other options even though I would have chosen anything that would have given my daughter a fighting chance of survival! During those emotional days I asked my nurses several times to hear our little girl’s heart beat. Feeling like if I could just hear her strong heart beating than I would know she had plenty of strength and fight in her to survive the numerous odds against her. My parents, brother and in-laws visited us during the days and I would ask the nurse to allow them to hear her heart beating too. Since they had never gone to an ultrasound I felt this would give them the opportunity to connect with their granddaughter and niece on a deeper level. I asked the OB what they would do for my daughter once she was born and was told she may be stillborn and there was nothing that could be done for her since she would be so tiny. I asked them why they couldn’t help her and learned the Perinatologist only consults with patients over 24 weeks and even though I was close they knew they couldn’t help her unless she was a 1 lb., so she wouldn’t be taken to the NICU. The pain from hearing this news was enough to make me nauseous and what little was left of my heart shattered beyond repair! My nurses talked to me about what to expect and offered over and over again to answer any questions I might have had, but they couldn’t answer the only question I really needed an answer to …“Why can’t they save my baby?”
Our little girl didn’t want to be born early either and she fought the induction as long as she could, but the medication finally won the upper hand and Stella Grace was born on December 23, 2010 at 5:43 pm at 9.8 ounces and 10” long. We held, kissed, loved, took photos, talked to and caressed her frail body while she tried to gain her breath until 7:30 pm when Stella was pronounce deceased.
We got to love our little girl the best we could for almost 2 hours, and believe me I’m very grateful for that time, but it wasn’t enough when I hoped to share a lifetime of love with Stella! Our Labor and Delivery nurses were wonderful and very compassionate! Once we were ready to give Stella’s body over they took great care in measuring, weighing, stamping her footprints, photographing and dressing her in a gown we selected from those donated to the hospital by our local chapter of Threads of Love. We held her again for our very last good-byes and kisses. Telling them they could take her was the most painful thing I’ve experienced in my life!
After speaking with the hospital Chaplain about the arrangements for Stella’s body, signing paper work for her release and her birth certificate I was moved to the Mother Baby Wing. My nurses told me they got me a room away from most of the activity and had informed the head nurse of my daughter’s passing and she would inform all the nurses on the floor of our special situation. Since I had HELLP I had to remain on the magnesium for at least 24 hours after birth, so I needed to continue with blood pressure monitoring every hour and blood drawn 3 times a day to continue checking my liver enzymes and platelet count. My body was empty, both physically with my daughter no longer being in my belly and emotionally drained, but my mind couldn’t stop racing through the whole experience. Somewhere around 3 am on Christmas Eve morning I asked my nurse if she could give me something to help me sleep a little because there was nothing I could do while I was awake except relive the nightmare I had been living over the last week. When I woke up a couple hours later for my blood draw I wished I hadn’t taken anything! I felt very heavy, foggy and even more confused why this had happened to me and our little girl. I spent the entire day in bed feeling completely distraught and anxious about the loss of our daughter, Christmas and an impending snow storm. My husband and I formulated a plan in hopes of getting my mind off of how horrible I felt and to relieve some of the stress I was having about the snow storm and Christmas and we asked my Mom to come sit with me at the hospital that afternoon while Trey ran around town running last minute errands. At least we would have some groceries at home for Christmas Day and if we ended up snowed in for a few days. The whole time Trey was out I panicked even more feeling like something bad was suddenly going to happen to him too and I would be losing both Stella and him all at the same time. The fact that he kept running in to stores closed early for Christmas and sounded completely stressed out every time he called to check in on me only made me more anxious and worried about him arriving back to the hospital safely. Finally he made it back after tracking down some groceries and unloading them back at home. We spent a pretty quiet evening in the hospital feeling lost, sad and alone. After my blood was drawn on Christmas morning a breakfast tray was brought in for me by food services and the woman cheerfully said, “Congratulations Momma and Merry Christmas!” It hit me like a hot poker being shoved through my chest!! I knew she didn’t know and certainly wasn’t trying to hurt me, but I don’t think I’ll ever forget hearing those words and the painful feeling I was left with! I realized it was beginning to snow outside and I asked my nurse how long it would be before my lab results where in and my OB would release me. I waited impatiently as the snow began to accumulate on the surrounding roads. My OB came in a little later to talk to us and she asked if I felt like I needed an antidepressant to help me through this painful time, see if I had any pains and if we had any questions before being released. We left the Mother Baby wing empty-handed on Christmas being rolled in the wheelchair past walls covered with photos of beautiful little babies being held by adoring parents. The black and white image of twins with their arms intertwined together will forever be burned in my head. With an empty belly and arms and my eyes full of tears we made our way through one of the worse snow storms seen in our area in years and began trying to sort through this never ending journey of life with out Stella.
We’ve now made it through Stella’s due date of April 17, 2011, Easter, Mother’s Day, Father’s Day and our 13th Anniversary and my heart is still shattered in a million pieces. It’s been a little over a year since we learned I was pregnant with what should have been our bundle of joy. Each holiday and special moment is forever tainted with the sorrow of loosing the most precious gift I’ve ever received. I try to allow myself to return to living my life and enjoy some fun, but it’s always short lived and over shadowed by the aching hole I’ll always hold in my heart. It doesn’t matter what happens in the future or if I bring a healthy child in to this World, I’ll always grieve the loss of my sweet baby girl. No matter where this journey takes me Stella will always be in my heart and firmly planted in my soul!
You can contact Shelby at Trelby@gmail.com