***Warning***PICTURES!

*****WARNING*****
This blog post includes something some will see as strange, odd or even offensive. This blog post includes pictures of a strange little thing called a...wait for it...a baby...our baby to be exact.

Her name is Claudette Elyse Elliott.
She was delivered to heaven Thursday, November 29, 2012 at 11:30am. She was a whooping 11lbs, 13oz, 20 inches (you can see all the great chub in the pics).

I place a warning because I have received more than one crazy look when I have asked people if they would like to see my daughter. Yes, I realize looking at pictures of a deceased person, let alone a baby, is strange and difficult and frankly uncomfortable at times.  I am not going to lie I was that person with the befuddled look on their face when I heard that people even took pictures of their stillborn...but then that was before I met my daughter!  See, she was ALIVE in spirit! And now we will always be able to look at her whenever we want. But I also understand one of the realities of having a baby born sleeping is most people don't expect (or want) to see the baby. But I feel like it is important to show the humanity of my daughter so that people can understand that indeed HUMANS and not "deformed fetuses" are dying needlessly!

I wish everyone had the clarity of thought and love as my grandma who when asked if she would like to see pictures said in a matter-of-fact and almost offended tone, "why would I not want to see pictures my great-granddaughter?"

BUT if you still don't want to look consider yourself WARNED because here our pictures of our daughter:

Hey Lovey!

Good morning little miss Claude-hopper!

I miss you so much today...but you already know that.

Yesterday was St.Valentine's Day. All in all it was a really good day!!
We started the day by making heart-shaped pancakes with your brother and
sister.

Then we made little personalized Valentines.

(The mess was horrible by the time we were done)

Henry was less than impressed with all the pink this holiday brings...

 

Amelie couldn't get enough of it!

(Pretty impressed she did her name all by herself.)

I made you a little Valentine...

(Sorry, we are not blessed with crafty genes)

Poppy stopped by and brought me treats. He has done this since I was a little girl. It means more than he realizes.

After naps and swimming lessons...

We made heart-shaped pizza.

 

Daddy brought me home the best chocolate in town...

 

...and a gorgeous card filled with handwritten words on that mommy will treasure for always. I will save you from embarrassment by sharing it.

Mr. and Mrs. G offered to watch your brother and sister so we could go out for a bit.
While they were having their little party...

(We found out Mr. Henry likes to cheat at Candy Land)

we were having a little party of our own...

At first mommy felt silly wearing the dress I got to wear at your funeral, but as your cousin Cahlea told me, "all outfits really do is hold memories." So I decided to add another memory to the pretty black and gold dress Aunt Jan and Cahlea purchased for me the night before we buried you. By 9pm I was feeling less like a grieving mommy and more like a hot date.

It was so nice to sit and talk with daddy about how silly your brother and sister are and how much we wish we could watch you grow with them. We love to sit and dream about our future together.

Isn't daddy handsome?

 Currently, we are discussing our plans for this old house. PAINTING is #1. The brown has got to go, right?! We also want to put in a perfect little patio in the back and have a great play area for Henry and Amelie. What do you think they would like more: a sandbox or their own little flower garden? I want them to do a flower garden were we can watch little flowers get bigger in honor of you. Would you like that? Valentine's day is such a nice time to just get away to talk and dream a bit. Mommy and daddy think it is very important to take time to do this no matter how much time or money you have.

Today while Henry was at PreK, your sister and I went to go visit your grave site. I feel bad I have only been there a handful of times lovey. But I know you are not there and honestly I don't like the idea of your shell shivering in the cold. At breakfast I asked what the kids wanted to bring to you. Henry wanted you to have a snack. He thinks you are hungry. He worries about if you are hungry or need a diaper change a lot. He decided an apple would be a perfect treat for you. (We don't need to tell him about the fact you don't have any teeth). Amelie said, "she needs her baby toy mommy" and brought down the little red headed rattle doll she had on her car seat when she was a baby. I decided to bring your less than creative Valentine and off we went to drop Henry at school and then visit you.

I was devastated when I got there and realized the beautiful pink roses daddy and I brought you a few weeks ago had flew away in the wind. Amelie and I decided to zip up our coats and go hunting for them. Your sister ran around finding baby pink roses and singing loudly, "Clean up! Clean up! It is what we have to do! Clean up! Clean up! It's fun for me and you!" I found it less fun and cried miserably as I gathered the now faded and frozen roses that had been so beautiful the day we got them.

(Pleased with herself for gathering all the roses back together)

After we tried to put them nicely back together, I stood there in tears and didn't know how to say goodbye...again. But true to form big sis was a big boss and said, "it's too cold out here! Let's go!!!" And ran to the van.  She is right.  It is too cold out there! Glad you are not there and are instead nestled in grandma's arm and Jesus' embrace.

(A snack from brother, a toy from sister, roses from daddy, and Valentine from mommy. All for you my lovey.) 

Return to Zero

I was so excited to learn of an upcoming movie that will tell the real not just the "reel" story as director Sean Hanish puts it of the aftermath of stillborn loss. I was shocked to read recently in an article from the NYT "Breaking the Silence" that while 2,500 babies die a year from SIDS, 26,000 die annually from stillborn loss. How many of us as moms know to put our newborn to sleep on their backs to prevent SIDS? Yet, there are still so many who don't even know that babies can die in this country so close or during the birthing process. What a huge health disparity. As a nurse, I know knowledge is power in order to prevent future death and injury. But I had no clue that 1 in 160 pregnancies ends loss after 20 weeks. Statistically speaking that means you will be affected by a stillborn loss, more directly put...

 you will know someone or be someone that loses a child.

I personally have a hard time with the word stillborn (see my post "Words/Phrases that Drive Me Nuts"). Although I feel the word takes away from the humanity of the child a bit, I also realize it is an important term we must educate ourselves on and empower ourselves and our healthcare providers against. I have yet to speak to an OB who hasn't had this happen to one of their patients, so why don 't we hear about how to decrease the risk and increase the knowledge?

I feel like it has to do with the age of the child. For some reason, we value life based on how old a person is. Anyone who has had a miscarriage or lost a grandparent has heard these questions:

How far along where you?  I found myself not wanting to answer this question b/c people assumed I couldn't be attached if it was only 10 weeks.

How old was he? Oh my granddad was 82 when he died. I guess since he lived a long wonderful life his loss is less.

It is like death is acceptable at certain stages in life: in utero and old age. This to me points to our lack of respect of life in general. While I understand on some level the acceptance of death for our elderly, I struggle immensely with our acceptance with it in our babies. When I loss the twins at 10 weeks, one of the first things I heard was 1 in 4 babies die in the 1st trimester we just don't know why, natural selection of sorts I guess. OK?!? So it just happens all the time. I guess I will just move on then?! Then when I lost Claudette days before her due date, I was left with little to no information. I thought this must not happen often. I was wrong! There is very little real info out there on the web and textbooks on stillborn loss.

50% of parents who lose their child will not know never know why.
This is too much!

In our case, we found out why and it could have been prevented.
This is unacceptable!

That is why I am thrilled that next year Return to Zero should make it's way to theatres to educate others about the devastation that unfolds when your baby is born sleeping. And as an added bonus for me Minnie Driver, who happens to be one of my favorite actresses of all time, stars in it!

Even in these early stages of loss, Dustin and I feel a deep need to spread the word. While it is very difficult to relive the details of our that dreadful day it was also the day our daughter was born and we love to talk about her! So we beyond excited a movie will come out that will give another reason to share our beautiful Claudette with the world as her name will be in the credits!!!
Click here to see Our Story on the Return to Zero blog

Birth Story

To think where I was mentally and physically eight weeks ago sends chills down my back. About this time my nurse Maggie was prepping my belly for delivery. As I said my tearful goodbyes to family, I knew mentally there was no turning back at this point, but emotionally I was not about to accept this reality.

A comment from my endocrinologist's nurse kept repeating itself in my mind, "maybe they were wrong. Maybe she did have a heartbeat." I said a the same desperate prayer over and over as we wheeled down the hallway, "Help them to be wrong! Lord, help them to be wrong!"

My husband was at my side as they pulled her out. I heard a CRY! I heard a CRY! "Dustin did you hear that? She CRIED," I whispered to him. "No hunny, there was no cry," he responded flatly.

"11:30" Was called out. I got excited. I started thinking that about the other kids time of birth. They all were born right about lunch time (always ready for a meal my kids). Wait...was that her time of birth or death?

Dustin rushed to her side at the scale. All I remember was seeing her perfect fat leg and foot straight up in the air as they weighed her. "11 lbs, 13 oz". Wow!! No wonder I could barely walk or stand for that matter. They told me a lot of that was her fluid overload.

Dustin picked her up and brought her to me. At this point I had no intention of even holding her. I looked at her and immediately thought back to nursing school. My first experience in pediatrics was with a mother who had found out her 3 week old had a massive brain tumor and wouldn't make it. I was the one who gave this little boy his bath and dressed him for his baptism. I was the one who held him as he was dying. I remember not understanding why the mom just rocked in the corner and wouldn't hold or touch him. I understood now.  But her story was not my story. "Give me her!" I practically yelled at Dustin.

It is a moment I can't explain. She was THERE. I had dealt with many deaths in my years as a nurse, the soul always leaves almost immediately with the last heartbeat. You can feel it, see it, sense it. This is NOT what happened with Claudie. She was as there as a screaming baby. I felt it, saw it, sensed it. I thought I was loosing my mind but everyone commented on her presence.


 

There is NOTHING in this world I have experienced like holding her. It was amazing. It was as close to God I have ever felt. We went on to spend the next several hours with her. My sisters held her. My dad and in-laws held her. My aunts held her. My sweet friends held her. No one was left untouched after holding her.

A picture of Aunt Candy (who incidentally looks the most like my mom) holding our Claudette.

For some reason at this moment I thought what I suppose any mother at this point would think. What will her siblings think of her? We had discussed it was too much their little 4 and 3 year old minds, so had decided against it. Something was pulling at my heart strings though. I kept hearing a little hazel eyed four year old excitedly expressing his wish to hold his sister. We talked about it almost everyday for the last 8 months. "I want Henry to hold her!" I blurted out.  "No sweetheart it is too much." At the exact moment my sister walked in, "Henry won't stop asking to come in here." Thank you Lord for answering the question for me. Dustin was hiding in the corner with Claudie so as not to scare him when he first walked in (her skin was sluffing by now). I pulled Henry to my side. I said, "you know your baby sister is not going home with us right?" "Yes". "Well she is here now Henry. Would you like to see her?" "Yes". Dustin turns around and the rest was beauty revealed. He took his little hand and rubbed her little head (something frankly I was afraid to do) and kissed it. "You're pretty," he said so matter of factly that it shocked me. "Do you want to hold her?" "Yes". So he did and looked at her the same as he looked at little sister Amelie when she was born. He saw her no differently. Then he said, "I want to go play with my legos now." PERFECTION.  He loved her as only a four year proud brother could.

My dear bereavement nurse, Tricia, who hadn't left my side at this point asked how we wanted it to go from here. I knew what she meant, but how was I to answer? Do I want hours more? Do I want days more? What I wanted was a lifetime more! But my nursing instincts took over my desires as a mommy. I told them to come get her at 5pm so they could take her to Children's Mercy for the autopsy.  Dustin chimed in, "can we make 5:30?" I told them to come get her at 5:30pm, no questions asked. I told them to ignore what would be said and just take her. Mommy instincts were kicking in now. I knew that I would never actually be able to say goodbye.

We asked for a moment to just be with her. So Dustin, myself and our precious baby girl attempted to do what most do after a long birthing day, nap. We did not nap. But we did not speak either. I held her curled up in my left arm. Dustin held my right hand. We just sat there. We didn't cry for fear we would waste valuable time with our daughter weeping. 

Dustin took this of me holding her as we sat quietly.

The way the hospital is angled makes for incredible views of sunsets. We learned this the week with spent with mom before she died. November 29, 2012 was no exception. We had a large labor room with a large window. The sunset hit her face in the most angelic way. I felt her body grow heavy and cold. I felt her spirit leave. It was 4:50pm. I looked at Dustin and whispered, "she's gone." He said, "I know." I gave her to Dustin and never held her again. We continued to spend the rest of time with her and gave everyone one last chance to come in and kiss her goodbye.

You can see the sun hitting her face as she laid in my arms.

5:30pm on the nose. The nurse came in with a Moses basket and took her from Dustin's hands as he screamed, "no". There were lots of screams and cries. I don't know from who or what was being said. I only remember me watching my dad and husband embracing and crying so loudly that it startled me. I lay there shaking from the hormone shifts looking around like a deer caught in headlights. I didn't know what to do. I still don't.

 

What is strange is it was such a beautiful day yet filled with such devastation. Tricia told me that someone told her to write down her memories of the day she lost her sweet Drew and throw it away. She told them no, because it was all she had. It was his birthday after all. So here we are eight weeks later, which according to all the grief literature is the worse time in terms of realization of the loss and yet I remember that day with all it's tragedy as beautiful.

Harder Than I Thought

I knew the this was going to be difficult. I knew it was going to be take my breathe away with the pain sometimes. I knew it was going to be impossible to feel like I could go on at times. I knew the days would grow dark and sad. With all that it is still harder. I am sitting here in a messy house surrounded by Kleenex and cranky kids and I all I can do is sob. I don't know what to do.
Have you been there? So sad and overwhelmed you don't know the next step to take. That is where I am at.

Friday is what started the downward spin. I woke up to someone being offended by my blog. Hard because when I write it I am in another world of sorts. I get it all out and then often read it back through with the rest of you. It often feels like I have just had a great workout after I am done, exhausted but feeling better. I don't write to hurt others. The exact opposite really. I feel like if I am having these thoughts others must too.  I hesitated to even continue with the blog, but Dustin convinced me to continue.

Then mid-morning I had my six week post op check up. This was my first appointment without Dustin since it happened. The receptionist forgot to let my nurse know that  I was there immediately, so I had to wait a bit with a bunch of ladies about to pop and a couple of cute newborns. As much as it hurts, I do love seeing babies so  I was fine. Afterward, I picked up my hungry kids and went home. Let's just say they were less than perfect. By 3:30 I needed a margarita! Bad!

As soon as I sat down the phone rang. Dr. Mitchell. Maybe, I left something at the office? Nope. It was him calling me the autopsy results which ironically had been dropped on his desk during our appointment earlier that day. He offered us to come in. I said no and I wanted to hear them then. I grabbed the pen and pad we normally use for the grocery list. The results hit me like a ton of bricks. I wasn't expecting us to have any answers really especially that early. I knew they could be back as early as 4 weeks but when we didn't have them back at the 6 week appointment I thought it would be months before we would get the results. I heard the doctor state lots of big words. Some words I understood from my medical experience, some I did not. The words I understood: macrosomia (a big baby), ascites (fluid in the abdomen), cardiomegaly (enlarged heart). Then a word I didn't: hydrops fetalis. It basically means severe edema in babies that is often fatal. Liver had been dead for 4-7 days. Other organs showed a time of death of a week previous. So she died most likely on Thanksgiving or very close to. And then he read the a part of the summary that devastated me more than anything I have ever heard in my life...most likely caused from maternal diabetes.

I continued to talk but I collapsed mentally right there. I could handle if I went blind or lost a limb because of this stupid disease but NO not the death of my child!! It is more than I can handle. I have had diabetes for 22 years and really not a single complication and this has to be the fate of this horrible disease?!

The guilt consumes me. I haven't slept more than an hour since I found out. Logically, I understand that I didn't do anything intentionally to hurt her, but it still doesn't change that fact that if I didn't have diabetes she would most likely be alive. And YES I know God was ultimately in control and the guilt is the devil's way of seeping in. And NO I don't want to hear, maybe she would be worse off if she lived or that my life was spared for hers. I will find a way to deal with all this I am sure someday but for now it is just harder than I thought.

We spend Saturday afternoon placing flowers on Claudette Elyse's grave. It is all so surreal.

Letter from Mommy

My dear, dear sweet Claudette Elyse,

Your daddy and I have had our fair share of "surprise" pregnancies. But not you love. We planned and tried to conceive you for months. When I saw the faint positive line in the Target bathroom, I wanted to scream for joy. Your big sis Amelie was at my feet and she super excited too. After so many negative test this was it; we were going to be parents again.

Our pregnancy was not easy, especially at first. The week we were to announce your arrival my mommy went to heaven. Her name was Claudette Olive. I told her on her death bed I would name this baby after her, thinking I would use Oliver. Daddy and I so thought you were a boy. My mom's quick reply was, "no one wants to pass on a name like Claudette." She knew you were a girl before we did.

The week after she died almost to the minute I started hemorrhaging. We thought we had lost you. As soon as the ultrasound machine turned on in the ER we saw our little fighter for the the first time. Your little fist and feet were kicking away.There were scares after that, but I always felt you would be immune to something really bad happening, perhaps because lightening doesn't strike twice right?

A  few weeks went by and another scare. But instead of learning something was wrong, we learned you were a GIRL! Daddy and I were shocked and so excited. We immediately knew your name. Claudette (which means dies young) Elyse (which means God's vow of protection). Little did we know how the truth this name would hold.

The months went on. I felt you so much. You were so active, especially when your brother and sister talked to you. I grew to love you each second.As plans drew near for your arrival, your aunties got so excited planning their trips to be here. Your poppy, grandma, grandpa, pappa and nanny all were getting so excited too.

Even though you were our third child, we prepared as if you were our first. I got a beautiful, soft swing for you and packed your diaper bag for the hospital complete with a soft pink outfit.
One last appointment I was to have before your appearence. The day started so wonderfully. Poppy and I had a great lunch and off I went to see Dr. Mitchell. But you were not to be delivered the next week. God had other plans. Plans I couldn't imagine. Plans I wouldn't wish on my worse enemy.

So my sweet sisters came for your birth early and haven't left my side since.
The day of your arrival had all the makings of a great birth story. Lots of family, love, laughter, pictures and tears. But as your daddy says you lived your lifetime in an afternoon.

Oh Claudette, how I long for more than an afternoon of holding your sweet body, kissing your soft new skin. I want to know you at 2. At 10. At 20. I want to attend your wedding. I want to see your children. Instead I will see you in the sparkle of your brother Henry's eyes. I will see you in the spunk of Amelie. I will see you in their button noses and baby voices. I will see you in the calm spirit of your daddy.

Your legacy lives on my love. You have somehow healed so many by your mere presence, as quick as it was. And as much as I long for you every second, I will never forget your impact. As your Uncle John says, "you have a regal presence."

And soon we will hold you again, which makes me long for heaven even more. Until then rest quietly in grandma's arms and Christ' embrance.
We love you Claudette Elyse Elliott,
Mommy