"Happy" 1st Birthday Edy?

"Happy" 1st Birthday Edy?

 

 

Instead of talking about this sad subject, I would like to first say I am watching a PBS special about skunks all by myself. I should be giving Edy a bath and getting her ready for bed. However, watching a nature special by myself on skunks pretty much sums it up.... THIS STINKS.  I swear if I were a skunk I would spray every person in my path this past year that irritated me... that's quite possibly why I was created as "Carrie", not a skunk. This may very well be my Ambien talking.

 

So, sweet Edy was born 1 year ago. Oh, she was the most beautiful little baby. Not only was Edy perfect.... but she will always be perfect, she never had a chance to do anything wrong (something my daughter and stepson will never understand unfortunately).

 

What are we supposed to do? I am very uncomfortable eating birthday cake because I already had the perfect vision of what her very own cake would look like as she poked her fingers in it and then became irritated because it was on her hands. She was to be my sassy and beautiful princess and five minutes later be a crazy screaming dirty monster, and I was going to adore and enjoy every moment of it. 

 My family has a tradition comparable to A Christmas Story... when we don't know what to say or do on a holiday or occasion - we go eat Chinese. So, we will be having Chinese food tonight.

 

 

Emma did pick out a present for Edy, it's a bracelet set that says Big Sister and the other one Little Sister. Heartbreaking watching Emma eyeing those bracelets and look at me, wanting to ask if she could get them- but afraid I would start to cry in the middle of the store. I showed no tears and told her of course she could get the bracelets. She's awesome- used her own money too, which shows me what a selfless amazing child she really is. I wish Edy could grow up to learn that from her big sister.

 

It literally hurts my heart to know that I will never be able to tuck Edy in her bed, I will never hear her tell me "I love you Momma", never get to put a band-aid on a scraped knee, never get to gently tuck her hair behind her ear when it falls to her face, never get to see her stick her tongue out sideways as she tries her hardest to color within the lines, never get to hear her laugh so hard that she begs me to stop before she pees her pants, I will never get to let her win at board games, teach her how to paint the perfect Armani swirl or masterpiece on canvas. There are so many other things I think of daily that I will never get to do, but I will honestly tell you this... my brain is tired, what is left of my heart is being pressed into my chest by a circus elephant that loves to eat more than just the occasional peanut, my skin is a dull gray color (gone are the vibrant rose colored cheeks that I had up until Edy died). I am just tired, I am just so tired of being tired, so angry, so very very angry. Disbelief- that is how I feel today. Why am I not picking up a birthday cake for my baby? I AM A GOOD MOTHER AND SHE WAS A PRECIOUS BABY and we deserved to be together. I wanted her, we wanted her... her leaving us was NEVER an option. She died, and a huge part of me died with her.   

 

So, I think in the future I will skip the Happy? birthday and just say "Today is Edy's birthday and we miss her so".

 

Baby Edy's Tiny Feet Are Tattooed Everywhere!

Baby Edy's Tiny Feet Are Tattooed Everywhere!

 

 

When Edy died, I was so desperate for ways to remember her. She had the most beautiful EVERYTHING I had ever seen, but the only thing we had of hers on paper were her dainty feet. I was to miss out everything with her in the future, including her walking on top of my feet while I stepped baby steps with her. So, I set out to find the best tattoo artist in Memphis.

 

 Dave at Underground was the popular suggestion of my friends. I needed someone compassionate and caring.... Dave was a tall man (everyone is tall to me) with a ponytail and of course tattoos. I explained my situation to him and the absolute beauty of sweet Edy Charlotte and how important it was for him to capture EVERY SINGLE CREASE in her sweet foot. I really think his eyes teared up (maybe I'm just convinced they did)... and I knew I had my new tattoo artist, he's a wonderful man!

 

 I was to get Edy's left foot on top of my left foot and my sister was getting her right foot to cover up a dumb tattoo that she got at age 15 using my ID saying she was 18 (I was supposed to go back the next day to get the same tattoo as her, but I decided it was dumb, and she will hate me for telling that story : ) Sister was with me when I went on bed rest.. to cook, clean, visit- then at the hospital almost every day to bring me something besides nasty hospital food, visit some more and I had time to get her hooked on The Young & The Restless again. 

We went, we were very somber and quiet most of the time- this was our tribute to Edy. Dave said you two are so calm! I told him needles don't come close to the pain of having your baby die in your arms, and yes- we are normally pretty spastic, but not today. My sister and I cried silent tears. Days later as my tattoo was healing I was soooo hoping my heart would begin to heal too. Tattoo healed beautifully, my heart was just "there".

 

**A lot of crying, fighting, grieving, laughing, crying again, etc happened between these two paragraphs, but it's really long to type right now.**

 

A few months later I was at the same tattoo place, seeing Dave with Edy's Neonatologist and NICU Nurse that were present from the day she was born until the day she died. They loved our tiny girl so much. I loved them fiercely for trying so hard to save Edy and taking care of us as parents. It was very difficult for me to talk to them after Edy died because the last time I saw them they were taking Edy off life support and crying with us when she died. I can't remember how long it was after Edy died- but we all began talking again. Dr. Nicole and I got the initial 1st meeting out of the way (it was like ripping OFF AN ENTIRE ROLL OF DUCT TAPE, not a band-aid) a tear filled reunion that has now turned into 4,382 topics of conversation every time I meet her! We cry, we are serious, but mostly we LAUGH until we CRY. I love it.  I'm so glad they are in my life now and are considered my beautiful friends. Dr. Nicole & Nurse Nicole wanted to get Edy's footprint to remind them of all of the babies they care for daily. Of course, I am convinced they were so in love with Edy and knew her foot print was the most beautiful foot they have ever seen.This tattoo appointment was funny, spastic, serious and I waited to cry when I left. ( Nurse Nicole has children and no tattoos of their feet, I see that being an issue one day. hahaha)

 Edy is in two different states now at two different hospitals. She walks around several NICU units with them, silently encouraging all of the other babies to fight.

 

 Some would say what a difference a few months make when it comes to grief when you compare the two tattoo visits. Yes, I am able to form coherent thoughts now and actually listen to what people are saying, but that doesn't mean Edy isn't always in my thoughts.

 

Now for the latest news, Edy's "Honey" (my Mom) and Joe (my Stepfather) are getting Edy's foot tattooed within the next month. My mom is 55 and has never had a tattoo! I can only hope the next time I see Dave to bring them in, we are all in an even better place.

 

Having my sweet girls foot tattooed on soon to be a total of 6 people is truly a beautiful thing. 

 

 I hope all three ladies comment on this story so they can share their thoughts too!

 

I am so thankful to have every single one of my friends and family who didn't know what to say to me when Edy died, but REFUSED to ignore me and give me the silent treatment like some. I know in my heart, all of you know who you are- I love you all so very much.

 

 

 

This is what almost one year of grieving looks like through my eyes

Approaching one year since our sweet baby Edy Charlotte was born & died. The following are about 3% of the experiences I have had so far

1. Wake up

2. Feel and experience all of this

3. Go to sleep so I can do it all over again tomorrow

.... Sadness, heartbreak, silent suffering, loneliness, desperation, gallons of tears, increased compassion for some, decreased compassion for bratty adults, weight loss, weight gain, lack of energy, restlessness, anger, guilt, new appreciation of hummingbirds, 1,000's of unanswered questions, hope, love, cherished new and old friendships, tattoos, giggles, guilt for giggling, passion, determination,  blank stares, crying when you pass the baby isle at the store, long chats with beautiful friends at Starbucks, medical bills you are still responsible for, expectations to be cheery and "over it" from 98% of people you come into contact with, eye rolling when people complain about their pregnancy or baby, and more hope.

Today, August 19th is a national day of Hope for all that have lost a baby..... there are many things I "hope" for- I hope someone doesn't say Everything happens for a reason to me again, I hope my husband and I can learn to adjust to our new normal (which I still hate), I hope no parents have to suffer like this, I hope Edy knew how much we loved her while she was here for 19 days.

http://www.facebook.com/#!/event.php?eid=171782669553959

Edy Charlotte.... we miss you so much.

9 months ago today, you were silently unhooked from all of those tubes,machines, tape, etc. We BEGGED you not to leave us, you were only 19 days old & about 1lb 7oz...we had so many plans for you baby Edy. We were ready to give you everything you wanted & literally show you the most beautiful places in the world. You already had us wrapped around your finger, had the most unconditional love anyone could imagine, & everyone that knew about you or met you was enchanted by your perfect beauty & strength. I will never understand why you had to die & I will never believe "God had other plans or it will get easier over time". All I know is, you will always be OUR BABY-& we miss you.

Edy would have been 9 months old yesterday

I miss Edy... and no, there is no better "place" than a Mothers arms...... and "you will get to see her in heaven" is not a good thing to say to a Mother whose heart she shared with her child was ripped from her chest as her 1lb 10 oz baby breathed her last breath and was already cold and purple.She should ,have been with us today at the pool and scrunching her face up when I put her toes in the water. She should have had on the ruffled bikini I saw at Target and cried while telling CJ, "that is the ONE". I should have been fussing over if I put enough sunscreen on her! I'm sorry, just venting and wanted someone to read or even listen to what I was thinking. When will this torturous agony and nightmare end? People say, "it will get easier" ... all I want to know is WHEN THE HELL is that going to happen? I would have given my own life for my Edy to live.

The Night We Came Home Hours After Edy Died

Coming home the night Edy died.

So, we walk in the big- empty- silent house…. Not cool to say “Dead” silent anymore. Its amazing how much I actually used that phrase before Edy died.  Neither of us knew what to say to each other.--------- His son and my oldest daughter were at their other parents houses… thank God. Neither one of us wanted to tell the kids…EVER. We both agreed it would be better if they were NOT present when Edy died. Neither one of us wanted them to hold their cold and lifeless 1 lb 7 oz (she lost 3 oz) baby sister. One thing I have learned about the big brother/ big sister situation and  the death of Edy… it doesn’t matter what we agreed to do or didn’t agree to do…. Any decision we made, will be one that I will always question as to what was right or wrong. We didn’t tell the kids the day Edy died, we didn’t tell them the morning after… we let them go to school and have a normal day since they were not with us at the time. What could they have done? We didn’t want to ruin any other persons day, much less our living children. We wanted them to have a GOOD day, because we knew deep down inside- none of our lives would ever be the same again. With all honesty (please don’t judge me unless you have been in this situation)  I really didn’t feel like consoling the kids yet either, the shock still hadn’t worn off and I was a wreck.

I’m off track already, professional writing will never ever be in my future, drats.

We walk in the house. I sit on the couch like a zombie and curl up into the fetal position. He unloads our belongings from the hospital… a lock of the softest hair I have ever touched in my life, a footprint and a handprint inside a seashell, a diaper so tiny I had no clue they actually manufactured them that small, a thin book  about “what to do when your baby dies”. Its amazing, pregnancy and baby books are several hundred pages… the book on what to do when your baby is dying/dies… is about 52 pages long.  Regardless, it was a blessing to have that book- it was my bible for the first few days.

He asks “you thirsty or hungry?” neither of us were. He then asked “want me to run a hot bath for you?”… “okay”- because I didn’t know what else to do. I sat in the bath and started reading my baby died booklet. The feelings of anger, fear, resentment, blame, helplessness, hopelessness, uncertainty, rage were all pounding through each beat of my heart. I could feel and hear my heart beating loudly in my ears and I HATED each BEAT MY HEART BEAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This was all an awful, cruel, bullshit nightmare. At that moment, I resented the fact that my heart was beating and I was alive, yet our Edy Charlotte was in a morgue. I cried and cried until I couldn’t  see to read anymore. He was making himself  busy with dishes, unpacking, etc. I sat back on the couch curled up in a ball and just stared off into space. Then I made him stop the busy work and sit with me. “Our baby died today, our baby died today, Edy has been dead for 5 hours, she‘s cold and she is by herself….” I said.

My sweet husband is not much of a talker. He’s complete opposite of me. Which is probably why he liked me when he met me, I did all of the talking. So, he did what he knew how to do, he just held me as we both cried. We cried awful, ugly cries that night while hugging each other so tight. “You know that you and I will never be the same, ever again, what are we going to do?”, I asked him. He just simply replied “You and I will HAVE to be there for EACH OTHER from this day forward with Edy’s death and we will have to focus on our living kids and making sure they are loved with all of the love they still deserve from us”.  A man of few words, he is a man of such wise words.  Sometimes when he talks, he reminds me of a walking/talking life sized fortune cookie--- so calm when he speaks, so eloquent, but he has YET to pick lucky numbers to win the lottery like on the back of the fortunes.

So, we are sitting in an empty and quiet house. Crying and hugging each other. I wanted nothing to drink, for Edy would never drink anything again. I wanted nothing to eat, for the same reason. I felt guilty. I still feel guilty every second of every day. I wanted to turn the TV on so bad that night for nothing more than a distraction and an escape from the world, an escape from reality. How childish is that? TV? So, I went to brush my teeth- with every single bristle of my toothbrush whispering to me “Edy is gone, Edy is gone, Edy is gone”. I slowly walked to our bedroom to lay in our bed and stare at the wall. Little did I know, that certain part on our bedroom wall would be what I stared at for weeks after Edy died.  My mind was racing… yet so blank that night. I stared at the spot where Edy was supposed to be sleeping in our bed.  When we found out I was pregnant with her, we were discussing where she would sleep. I said I wanted a co sleeper on my side of the bed so she would be at arms length for me to feed her and I wanted her close to me at all times. Husband said “No. I don’t want her on your side, I want her between both of us, I want to take care of her and be able to love her at night too”.  We discovered a cool thing the size of a clothing drawer that was meant for babies to be in their parents bed, but safe for them because it was their own little space. Before I went in the hospital, we discussed setting up her little box between us on the mattress so we could get used to sleeping with less space in the bed. We joked about it being our “baby in a box” sleeping between us. You know what? Its not funny anymore to me. DAMN IT, we researched everything for her…. For her to be the healthiest and safest baby. We really had everything perfectly in place for her arrival- I studied SIDS, picked out Halo sleep sacs for her to sleep in , Husband/Chef was going to make all of her baby food and we both said she probably wouldn’t even sleep in her room upstairs until she started school- we both hated the idea of her being upstairs and away from us- Husband even said “her room will probably just be her playroom”.

I see people on Facebook with pictures of their babies and a full ashtray in the background next to the baby bottles. And MY baby died? I see a lady at the bus stop with 7 kids and they all have green snotty noses and no coats on when its 40 degrees… and she has her fingernails and hair done, while talking on her I-Phone. Yet MY baby died? AGAIN, IM OFF TRACK.

So, I stared at that spot on my wall while I was in bed, and held her teeny tiny diaper… and cried myself to sleep hoping I would wake up the next day and tell Husband…. “I had such an awful nightmare” !
But, waking up the next day…. That is another story be posted soon.

Fat & Happy? Or Just Fat?

Fat and Happy? Or Just Fat?

(Disclaimer- I never stay on the subject, ever. If you have had a conversation with me, you know I will cover nine different topics in a ten minute conversation, I apologize in advance)
I have asked myself this question since Edy died 6 months ago. Since her death, I have become a bit obsessed with wearing all of my maternity clothes, I suppose they make me feel closer to her since her little body was in the belly of my maternity clothes at one time and she was SAFE THERE. I believe my husband may be thinking he is sneaky by washing the clothes and putting them in a box in Edy’s room upstairs one tank top at a time, but I am secretly “on to him”.. .and I don’t have the energy nor desire to argue with him. I know he is doing this for my own wellbeing and to try and help me. I lost all of the baby weight after Edy died because I was so depressed and did nothing but lay in bed and stare at the wall for three weeks straight after her memorial service- no TV on, no reading, no nothing- just a blank spot on the wall that I stared at. Now, I have managed in the past 4 ½ months to gain about 20 pounds. I know it is a combination of emotional eating, my Ambien, being back at work and not having time to eat a healthy lunch (or better yet, the desire to pack a healthy lunch), not feeling ANY aspiration whatsoever to move unnecessarily (such as exercise)… but the biggest reason is, I LONG to feel like I am pregnant with Edy again. Sad, but true.

My 10 year old daughter is now being exposed to girls in her class bragging about how they don’t eat a lot because they want to be SKINNY. When she told me that, I felt sick. I wondered for only a second “where did these girls hear all of this crap?”. Then it all came flooding to my mind. I passed a sign today that said “Thin Is In”, while Wheel of Fortune was on at 6:30 pm we saw a Victoria’s Secret commercial of the girls strutting around in padded bras, panties that barely cover their “whoo ha”, butt cheeks hanging out, a perfect airbrushed tan, hair extensions for luscious flowing hair and silicone make-up patches to hide the circles under their eyes. I then had to explain to my daughter “honey, REAL people do not look like that, as long as you eat a healthy diet and stay active, you will be ABOVE the average person because the average American size is NOT what those Victoria’s Secret models are.” Poor things, you know they really would like to eat a sandwich.

No, I am not being hateful, I am doing what I would hope ANY mother would do- tell the truth and don’t encourage your daughter to aspire to look like that by starving herself and being malnourished. My daughter said to me the other day, Dad’s soon to be wife (that he has never introduced me to) said she thinks she is fat. My response was “that’s really sad if she wastes her time complaining about that and isn’t happy with her body”. Daughter replied back “She’s sooooooo tiny Mom! She has a great hour glass figure and wears extra small in shirts like you used to wear, I’ve never seen such a pretty hour glass figure though”. Ugh, that hurt to hear. Yes, I did wear a size zero pants and extra small shirts and dresses, but you know what? Looking back - when I was that small… I was SO UNHAPPY with a lot of issues in my life. My daughter is at a point where she always wants to be around her friends and they play outside, I feed her organic foods when I can, whole grains, a lot of fruit, plus odd cheeses for a child her age like Pick Wick Cheddar with Caramelized Onions so I am happy with that. Fyi- the “skinny bragging friends” are not present and don’t hang around with my daughter outside of school.

I have to worry I am not setting a good example for her but- I strive to eat healthy around her and I put on the biggest happy face for her. Its when she’s not around me that I eat a bunch of crap and don’t want to move. At least I do it in secret, I guess. Around my daughter I am not Fat and Happy or Just Fat. I am “heavier than normal and happy”, which is all that really matters to me- having a positive attitude and not complaining about weight around her.
　
　
So, I am so thankful to have food in my cabinets at home to eat at any time I want to. I chose to be whatever I feel like- fat, skinny, happy, sad, energetic, sloth-like whatever at this moment.
Isn’t the official word “it takes a year for your body to get back to normal after pregnancy”? If this information is true, the way I look at it is… I have 6 more months to do whatever the hell I want to...right?

Our Precious Edy Charlotte's Story

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 1^st 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 29^th 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 16^th 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 2 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 1^st 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 1^st 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.
　

Our letter to our beautiful baby girl Edy when she died at 19 days old

Our Beautiful Edy Charlotte,

               We are at a loss for eloquent words, so we will just do the best we can…  

Sweet Baby, we have planned for you for almost 5 years.  We envisioned having the most beautiful princess… and I must admit we really outdid ourselves. Perfect Beauty…  

               There is honestly not one single feature that we could have 

changed that would have made you more beautiful.  Your hair is as soft as a favorite t-shirt that has been washed one thousand times in one thousand bottles of fabric softener (because Momma always uses too much).  Your ears are so tiny and dainty.  We had already planned on buying the most beautiful diamond earrings for our sweet girl.  We loved seeing your sparkling eyes every time you opened them.  We intuitively know in our hearts that you were looking at us with excitement about the fact that you had the most loving parents.  We just knew you had decided to keep us J! 

               We were so excited to polish your tiny little fingernails and toenails.  

We wondered what your favorite color would be, your favorite food, your favorite everything… Your Momma couldn’t wait to show you that your Daddy is a perfect example of the type of man that you should marry when you grow up.  Your Daddy couldn’t wait to watch you grow in the likeness of your mother.  To see you become a generous, kindhearted woman with warmth and a hopelessly optimistic approach to the world. 

               When you were unhooked from all of your tubes and the 

machines were turned off, there was the most peaceful silence.  A dark and ominous rain cloud lurked over the hospital.  Literally, the very moment we sat down to hold you while you died in our arms, from the clouds emerged a distinct opening and the brightest ray of light shone into your window and continued to shine for the next 20 minutes until your heart stopped beating and you breathed your last breath.

               Your Daddy and I promised right then and there that we will 

never forget you.  We miss you so much everyday and we always will.  We also promised to always openly express our feelings of sadness to each other and to always be there for each other.  We promised we would continue to so a great job of raising your big sister, Emma and your big brother, Jacob.

               Emma and Jacob don’t quite understand why 

you are gone.  They were so upset because they just wanted to hold you and love you.  We want everyone to know how absolutely amazing and strong you were for the 19 days that you were with us.  We have already decided to think of you and what you endured to stay with us for your short life whenever we think we are having a bad day.  We will never understand why you were taken from us, but we are so grateful to have had you for the time that you were ours.

Love,

Momma & Daddy