This is a brief recollection of Edy's story, I will be adding more details when I remember them, and can see to type past all of the painful tears that sting my eyes like battery acid. You may or may not personally know me, you may see me smile, you may see me cry, you might see me in the grocery store with a blank stare on my face... if you do, this is the reason why.
Baby Edy Charlotte’s Story
We were involved with March of Dimes beginning two or three years ago. My beautiful husband, CJ was an Executive Chef that gave his time and eagerly volunteered for the March of Dimes Gala as a Celebrity Chef. I work for a Distributor of Domestic & Imported Fine Foods, so my sister and I were excited to be editing the recipes the Chefs submitted for the March of Dimes Program/Cookbook. Little did we know, we would actually have a baby that would become a March of Dimes story.
CJ and I dated for 5 years and had Edy’s name picked out 6 months after we started dating. We were so excited about having a child together! Our plans for 2010 were to get married, purchase a new home and have a baby. We were married in March, the next week purchased a new home AND found out we were pregnant! I requested and read every piece of information from March of Dimes the minute I found out we were expecting! Two months before we tried to conceive I had Cj and I taking vitamins high in DHA and Folic Acid every day. We were determined to have the healthiest perfect baby. I was consumed with reading every book about pregnancy and babies ever published, I HAD to know every single fact about pregnancy, child birth and our babies stages of development after she was born.
My 1st visit to the Obstetrician was a nightmare. The Ultrasound Technician said “I don’t know what this mass is, but it has no heartbeat.” I was sent home to wait and cry for one week and they already had a DNC scheduled for that week after my follow up appointment. The next week at the appointment, STRONG HEARTBEAT! Life was perfect! We started buying a pack of diapers every week after I was 3 months pregnant, to stock up for her arrival! About six weeks passed and I was 18 weeks along. We were looking forward to our next obstetrician visit to find out the sex of our sweet baby. I KNEW it was a girl! I wanted Cj to experience the true love a Daddy has for his little girl.
A few days later I woke up feeling strange and went to work anyway because I knew pregnancy has its different aches and pains. That afternoon I scheduled an appointment so my Obstetrician could tell me I was overreacting and everything was fine. My Obstetrician was very happy because the test for amniotic fluid leaking was negative. Then he checked my cervix, and froze. He sat in his chair and put his hands over his face and said “Oh Carrie, your amniotic sac is funneling out of your cervix and you are already dilated 3 cm, you have to be admitted to the hospital immediately. I could barely talk when I called Cj and my Mom. My Mom was there within 10 minutes, Cj works and hour away and was there within 45 minutes. I spent 2 days in the Trendelenburg position (basically laying on my head in the hospital bed) My face was so swollen laying like that and crying the whole time. They were hoping gravity would pull the amniotic sac back through my cervix. When they came to do an ultra sound to check my cervix, they were also able to tell us “IT WAS A GIRL”. Gravity did not help in my case, they scheduled an emergency Cerclage. MY specialist Dr. BK as everyone calls him, outlook was honest… the sac may rupture during the surgery and she would be delivered immediately, she would then die. I wrote a long letter to Edy without even thinking about what to say, the words started rolling. I made my normally shy husband put his hand on our baby bump, now officially Edy and read her the letter out loud so she could hear how much she was planned for and loved. We wanted to know her favorite color, what her voice sounded like, etc. I cried as Cj read it.
Dr. BK successfully moved the sac and I had the cerclage in place! He was our miracle worker and our hero! My progress was great and a week later I was sent home on strict bed rest. Two weeks later, Cj woke me up at 6 AM asking me what was wrong. I was still groggy from him waking me up and I said “I’m fine, just had a dream I was bleeding everywhere, it was an awful dream!” Cj looked like he had seen a ghost “Honey you are bleeding everywhere, from the bathroom to the bed”. We rushed to the hospital, I was admitted and was told I would not leave until I was about 37 weeks pregnant. What was I going to do in the hospital for 16 weeks!?! Cj and my sister came up to the hospital religiously to see me. Cj came in every morning for 3 minutes to tell me he loved me and touch my belly before he went to work, he was taking care of my 10 year old daughter Emma and his 6 year old son- while working his regular demanding job. My sister Eli came up everyday and would bring me decaffeinated Starbucks and lunch, she would sit and visit for about 2 or 3 hours, just to make sure her big sister was okay.
I grew depressed with bed rest, not being able to go outside, etc. BUT, I am so fortunate I was forced to STOP and just focus on every kick and movement from Miss Edy Charlotte. Every day I felt like a 130 lb human that was asked to sit on an egg and NOT break it. Her kicks were getting stronger by the day, we made it to 24 weeks gestation so I could receive steroid shots for her tiny lungs. The whole Antepartum floor was so excited and high fiving because things were looking up! Certain nurses grew very attached to me and preferred to have me as a patient on their shift. It was so sweet. Dr. BK or his assistants would come in everyday to check on me and Edy, then we would mostly discuss the best restaurants in Memphis, because of my profession. We all developed a wonderful friendship.
On Sunday August 29th I was planning my day of reading, laying still, and feeling Edy kick. The moment I sat up the slightest bit to eat breakfast, my water broke. I called the nurse crying. She told me not to panic, this happens sometimes and I might have to drink a lot more water, but I would be fine. Then the contractions started and Edy’s heart rate was getting below 50 beats per minute at every contraction. They finally had to turn the monitor away from my sight so I would stop getting so upset every time I saw her heart in distress. By this time I had 4 nurses in my room watching what was going on. Then I heard the words “You have to go downstairs for an emergency C section honey, Edy isn’t doing very well“. Dr. BK and Dr. Aycock said we have to take her immediately.
I was 25 weeks and 6 days pregnant and I was going to have a baby in a very short time. Cj was so wonderful to me and so clam so I would settle down. While prepping for surgery, Edy’s Neonatologist , Dr. Nicole Mitchell came to meet me and tell us what will happen. Dr. Mitchell and her team would take Edy straight to the NICU and call us when she was stabilized. Dr. Mitchell held my hand and looked at us with the kindest eyes, it immediately put my mind at ease that everything would be just fine, I knew Edy was in wonderful hands and she would live. During the C Section, the whole team of eight doctors and nurses were silent when Dr. Aycock delivered her. No one said, “look at your beautiful girl Momma or listen to that huge set of lungs on Miss Edy”… the silence was deafening in the Operating Room. Cj finally murmured “Oh honey, she is so, so, so small” There were no tears of joy, just tears of uncertainty.
They called two hours later to say she was stabilized and Cj could go see her. That is when he cried and cried after he hung up the phone. He took my phone so he could take pictures and video for me to see her. They said I couldn’t see her until the morning, but I refused to accept that. I went at 10:30 pm. She was 1 lb 10 oz and 12 inches long of a pure tiny feisty girl, just like her Momma. She was so perfect in every way. She did not look like the 26 week gestation babies we Googled to prepare ourselves. Everything was so dainty and so well developed. She looked just like a full term baby with all of her features, she was just ¼ their size. Days progressed and she had her good times and bad. She was on a ventilator because her lungs were not developed as well as they hoped. Then her lungs were worse, so they placed her on an Oscillator to help her. We were not allowed to hold her and my arms ached to just hold her and love her. Cj and I slept on a tiny couch together in her NICU room, we didn’t care how uncomfortable it was, we HAD to be close to OUR Edy.
When she was about 7 days old, a team of four doctors came in to tell us Edy would probably not make it through the night. CJ and I were in disbelief. We got every children’s book we could find to read to her all night. We took turns reading to her and reading a chapter from one of my books called “when your premature baby is dying”. We stayed up until 4:30 AM reading, singing and just gently touching her head so she would know we were there. We woke up at 7 AM, and Edy was STILL WITH US! We were so excited, she was actually doing better. The NICU nurses had a special bond with Edy and tried to hurry up and claim her as their patient before the beginning of their shift. Everyone commented on how genuinely beautiful she was. When they changed her over to a ventilator again, I asked if we could hold her. One nurse was very reluctant because of all of her tubes and it would be too “difficult”. So, I went straight to Dr, Mitchell and asked her to please write it in her orders that we get to hold her once a day. She gladly did it! We had the honor of holding her for 4 days, me two times, Cj two times. When I held her, she was so tiny, I could barely feel her on my chest, I cried softly so I would not disturb her. It was my two hours of heaven when I held her. Her favorite person to hold her was actually her Daddy. The last time I held my sweet Edy was when her 10 year old big sister ,Emma was present, Emma was upset she couldn’t hold her and didn’t understand why. Emma started doing her homework on the couch in Edy’s room, they made the detailed transfer from her Daddy’s chest to mine. The second I thought we were all settled and I would be able to hold Edy for an hour, feel her tiny body curl up on my chest, feel her tiny hands softly pet my skin, cup her sweet little head (the size of a tennis ball) of the softest hair imaginable… her oxygen level plummeted, she was turning blue, alarms went off, nurses and doctors ran in and swiftly took her from my arms, bagging her with oxygen, reintubating her and stabilizing her. Emma was on the couch watching the whole time, petrified with fear and worry. I was trying to console Emma, go back to Edy to tell her “Momma is here”. Apparently, when they moved Edy, her chest tube became clogged because the position changed and they had to change it again. It was literally one centimeter that it could be moved, so she was actually so much more fragile than a raw egg in a shell. I’ll never forget hearing “well, you can’t hold her today afterall, she needs to rest, we will try again tomorrow”. But that day never came, her lungs once again got worse, she was back on the Oscillator. We were able to actually change a few of her diapers and at least touch her soft beautiful hair but no more holding her.
Edy turned blue and was close to dying 3 or 4 times, it was awful to watch them try to intubate and bag her with oxygen again so she could breathe and clear all of the mucus from her chest tube. Cj and I would squeeze between the team of doctors and place a gentle hand on Edy and tell her she would be okay and we loved her so very much.
On September 16th we woke up and saw the best vitals we had ever seen in her 19 days of life! We were so excited! Again the team of 4 doctors came in, “her blood gas levels were the worst she had ever had, she developed a brain bleed, they couldn’t turn up the ventilator anymore or her lungs would rupture, this really was the end for her” and it was our choice when we wanted to take her off the ventilator. If we didn’t take her off, her body would slowly shut down. I looked at her sweet face and saw her wincing and squirming in pain. This wasn’t fair for Edy. I felt like a wild animal, I wanted to run out of the hospital and never look back, I wanted to unhook all of her tubes and hold her and will her to breathe and get better, I wanted her to be at peace and not be in pain. Cj and I told the team of Doctors “Where is Dr. Nicole Mitchell? We will not do ANYTHING until she validates what you are saying!”. One doctor said, “Dr. Mitchell is at Methodist South dealing with another infant death…..”, “I DON’T CARE, I cried- WE ARE GOING TO WAIT FOR HER! Absolute silence as they walked out of the room. Cj and I stared helplessly at each other, we knew what we had to do. We cried and cried and stood by Edy’s bed and touched her sweet head of the softest hair you could imagine. Dr. Mitchell arrived with a grim face, “I’m so sorry you two, I’m just so sorry”. I felt like someone just hit me with a baseball bat in my stomach, she was the only one we could hear it from… and she had agreed with the other doctors.
Cj and I decided we would not take her off the ventilator when it was dark outside. We wanted Edy to be able to see the beautiful sunshine as she died. Cj packed our 19 days of accumulated possessions (clothes, 6 books on premature babies, my breast pump, Edy’s “Girls Only” & “Princess” sign hanging in her room, baby blankets, a tiny diaper of hers, etc.) Watching him roll all of our belongings away on one simple cart was devastating. Our Hopes, our dreams, our future… all fit into one cart and rolled away. My Mom arrived and was so good to us, she just cried and said “I’m so sorry”. She wasn’t just feeling the loss of our sweet Edy, but also couldn’t console her own daughter who felt like she was dying inside.
When 4pm came, it was time. They said the morphine would take about 10 minutes for it to effectively be in her system so she would be comfortable. I made them wait 20 minutes after administering it, to make double sure it was effective, our sweet baby had hurt enough. Cj told Edy “If anyone ever tells me they are having a bad day or I think I am having a bad day, I will think of my sweet baby girl and KNOW none of us have had bad days compared to you, you are such a strong and brave little girl” Cj kissed the back of her neck as he did 12 times a day, and for the 1st time in 3 days… she opened her eyes. She loved when he kissed her with his million baby kisses. When it was time for them to unhook her from all of those machines, I had to walk away and compose myself as much as I could, sitting on the couch waiting to hold my baby with no tubes or machines beeping. I remember Cj saying “she’s unhooked from everything honey, they are bringing her to you”. Dr. Mitchell brought her to me, my eyes were so full of tears I had trouble seeing her. Edy was the most beautiful being I had ever seen. I held her to my chest and rocked her saying “Mommy is so sorry honey, please… start breathing on your own and prove everyone wrong, (but she was already blue) it was such an honor to have you in our lives and we will never forget you, ever- Mommy is so sorry, Mommy is so sorry”. Cj then held her and just walked around with her crying endless tears. When I held her again, I knew she only had a few more minutes left, her heart rate had slowed so much. The sky was cloudy and I was showing her how beautiful outside was, at that moment- the clouds broke and a ray of sun shined right in our window. Then I cried the most guttural awful cry. Cj asked “Are you okay” and I just silently cried… she’s gone, I know she’s gone. Dr, Mitchell came in and confirmed- Our Sweet Precious Edy had indeed died. Dr. Mitchell and nurse Nicole said “take as long as you would like with her”. My 1st thought was, “then I will never leave.“ We called Edy’s Honey (my Mom) in the room and she held her and cried so many tears. None of us knew what to do.
I handed nurse Nicole my phone and said “Please call my friend Marci Lambert, she is a professional photographer and volunteers for Now I Lay Me Down To Sleep”. The organization is a group of professional photographers that donate their time and take photos of peoples babies after they have passed away. Marci arrived with tears in her eyes, “I already planned on taking beautiful pictures of Edy when she got out of the hospital…. Not photos like this”. We were able to dress Edy in a beautiful little pink smocked dress that was as small as a dress for a tiny porcelain doll. Edy was exactly the size of a ruler when she stretched out, but mostly she stayed curled up in about a seven inch ball on her belly.
We were in shock, we didn’t know what to do “how do you leave your baby at the hospital knowing she is going to be zipped in a tiny body bag and placed in a cold stainless steel drawer in the morgue?”. It was getting dark outside, we knew we needed to go home- Edy wasn’t there anymore. We walked out like zombies, nurses hugging us and crying for the loss of the most beautiful baby, Edy’s life. On the way out, we passed a nonchalant Dad carrying an empty car seat into the hospital, they were taking their baby home. We were silent and walked out of the hospital with our heads down, we were exhausted and defeated. I held my C-Section scar and thought “This is my battle scar, from a battle I lost”.
Our hopes, our dreams and our future that included baby Edy- were gone. We were empty inside. The sparkle in our eyes we once had, was gone. It was exactly six months ago last week that she died, life is so different now. We don’t laugh like we used to, when we see a baby girl we put our heads down and want to cry. Yet around people outside of our family, we still have to smile, act content, do our jobs as we are expected, overachieve to continue to make our employers happy and be there for our living children, Emma and Jacob… but inside we have such a huge piece of our heart that was ripped out the day our precious Edy Charlotte’s tiny heart, beat its last beat.