Monday, February 28, 2011

Little Hospital of Horrors

As if we haven't spent enough of our recent lives contemplating the last 25 hours of Ellie's life, we headed to the Emergency Room with Max last night to further traumatize ourselves.

Max's fever, cough, lack of appetite (he didn't even finish his ice cream last night- that's big) and general fatigue probably wasn't ER worthy. But my complete paranoia mixed with the CLOSED sign on the Urgent Care doors, led us to ER check in desk anyways. When we walked in the door, I was already anxious. Max's cough has been going on for about a month now, and two antibiotics later, we are not getting any better. We actually seem to be getting a little worse. And the whole time, I have the voice of Ellie's infectious disease doctor echoing in my head, "We would have been more worried if she wasn't responding to our treatments and attempts to make her better." I could NOT keep myself from thinking, "holy shit, this can't happen again."

In the germ-infested waiting room, Max sat on our laps and barely moved a muscle. And I'm pretty sure Max wasn't paralyzed with fear, like his Mommy was. There was no Animal ABC's and no Wonder Pets play-by-play. He just sat there and stared at the Toy Story movie playing on the TV in front of him. And he has never seen Toy Story, he hates new movies. But there he sat.

Finally, we were taken back to a room and as soon as we walked in, the tears started. I couldn't help it. They just came. Seeing all the equipment and monitor was so overwhelming. I didn't want to remember our time in the ER with Ellie and I didn't want to think about Max being sick enough to need any of that stuff. I pulled it together and sat on the bed with Max.

I was ok until the doctor came in. That poor man, he had no idea what he was walking into... He did Max's exam and we started talking game plan. He wanted to do a chest xray to rule pneumonia and a nasal swab to check for influenza. I was pretty convinced it was pneumonia, he was pretty sure it was influenza. He said for pneumonia, we'd start on some new antibiotics- I thought, "no problem, we can handle that." BUT THEN, we ran through the influenza scenario... Bad idea Mister. He said the worse thing he could, he said, "If it's influenza, he's going to get sick. He's going to get a lot worse. He's going to get really sick."

The tears came immediately. In an instant, I was back in Ellie's PICU room, sitting in the chair facing her bed, with my back to the window and world outside. The doctor was sitting in front of me, with his hands on my knees, saying how sick Ellie was. He was saying she wasn't going to get better and was only getting worse. He was saying that ECMO was her only chance, IF she even made it to the other hospital.

I just kept thinking, "I can't do this again. I will completely lose it if Max gets really sick. I can't handle seeing another one of my babies with a tube down their throat."

One x-ray and nose swab later, everything came back normal. No pneumonia. No influenze. Just an upper respiratory infection for Max and near mental breakdown for Mommy. Dave, still concerned, got to pay the bill. I made the doctor tell me what happened to Ellie is rare and that this wasn't what was going on with Max. I asked questions that I KNEW the answers to. If I'd been able to run carrying a very sleepy Max, I would have sprinted through the exit door once discharge papers were signed.

Max awoke with this morning with a low grade fever. He ate an appropriate amount for breakfast and seems just a little tired. I kept him home from school, probably more for me than him. And I'm glad I did- because he then decided to break out in hives for no apparent reason. Sure why not, right?

Before Ellie died, we had been to the emergency room once with Ellie, very sick, and Max twice, not as sick, but still pretty ill. During those times, I wasn't overly worried and had no anxiety whatsoever regarding our presence in the ER. I didn't like seeing my kids sick and having pokes and other tests done but I knew it would help them and so it's what had to be done. Last night was sooo different. I didn't want them near him and I wasn't at all sure what should or should not be done. No, I'm not a doctor, but as a nurse, I have a pretty good idea of treatment protocols for children with certain conditions. As a mother, I know my child and know when something is wrong.

Since Elle died, I don't trust what I know as a nurse, and I certainly don't trust my mother's instinct. Yes, I felt there was something wrong with Ellie, that night I remember sitting in our bed holding sick Ellie and thinking, "I feel like this is worse than it seems." But I brushed it off and I was so wrong to do that. Ellie needed me and I wasn't there for her. Last night, when the doctor asked us our opinion on the treatment course, I didn't really know what to say or even what to think. Part of me kept thinking, "yes that makes sense," the other part kept screaming "BUT LAST TIME..." It wasn't just Max's sickness we were dealing with last night. Losing Ellie, especially the way we did, has left me questioning everything. Nothing is as it seemed to be.
Remembering February 28th, 2010

It's funny, the things that you remember. I don't remember a lot of about this day. But I remember being so excited that Ellie could finally wear the outfit sent to her all the way from Arizona by Paul and Sue. It was so cute! Little black leggings and a frilly pink skirt. Truthfully the leggings did nothing for her chunky thighs :) and the shirt was a little big but I put them on her anyways. We spent the day at Dave's parent's house and the kids spent the day being held, read to and playing. These pictures make me a little sad, because they are some of the only pictures we have of Ellie and her Grandpa, and Ellie and her Great Grandma.

Sunday, February 27, 2011

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief... and unspeakable love."
- Washington Irvin

Remembering February 27th, 2010

 I can remember when I bought this turtle print outfit for Ellie at Babies R Us. Most everything else purchased that day screamed GIRL! It was all either pink or purple. But as soon as I saw this, I knew Ellie needed it. At our second ultrasound we thought she looked just like a little turtle and referred to her as Turtle for a long time. This was the first day she was able to fit into it. It was also about the only day she was able to fit into it. She grew like weed!

Our little Peanut all dressed up in her pretty little dress and ready to meet some more family!

Max's beautiful baby blues.

Grams, Gramps and Ellie

 Ellie giving Gramps smiles :)

 Ellie meeting cousin Jen

Snug as a bug in a rug. Ellie loved to be all wrapped up in her warm fuzzy blankets. I sleep with this blanket every night.

Saturday, February 26, 2011

Her Belly Button

Yesterday I didn't really feel like looking through old pictures. I guess you could say I was a little fragile yesterday. That damn waterpark and "fun" family trip, kicked the crap out of me. And I'm glad I didn't look at the pictures from yesterday because even today, they make me so sad. I think about Ellie all the time. I think about how different every aspect of our lives should be right now. I think about the funny things she did and how smart she was. It's harder for me to think about her little body. I try to focus on a certain aspect and if I can't recall it, it really upsets me. Or sometimes I just end up thinking about how her little betrayed her in the end. And those images, those images are what nightmares are made of. I really try not to go there.
But still it amazes me to no end, how a person can come from two small cells. An entire person. It truly is a miracle. Because our kids are invitro babies, we have pictures of them as 32 cell embryos. It's insane! It's crazy to think that I grew these two little people in my body. While I definitely have some issues with how my body failed Ellie and allowed her spleen to die, I cannot help but be in awe of her otherwise perfect little body. They change so much that first year, so I tried to make sure I took pictures of them in their diapers so I could remember just how tiny they were.
I love these pictures of Ellie. I love her big baby belly, her arm wrinkles, her long legs and slightly chunky thighs. And I love her belly button. It's weird to think about and I never really thought about it before but everyone has a different belly button. When I pulled these pictures up on my computer, the first thing I noticed was her belly button. Immediately, I thought, "Oh that's HER belly button. I miss that belly button." Weird, right? But I do, I miss her belly button. 

Remembering February 25th, 2010

February 26th, 2010

Friday, February 25, 2011

4 months gone

It’s been four long, horrible and painful months since Ellie left us. It’s been four months since we left our girl on the hospital bed and walked down a dark deserted hallway and into our new life. It’s been four months and it still doesn’t seem like it happened to me. I know Ellie is gone. Obviously she isn’t here with me anymore. But those last terrible 25 hours, don’t seem like they belong to me. I know they have to. Somehow, they seem like someone else’s nightmare.

On Ellie’s one month angelversary, we trudged through Thanksgiving. On Ellie’s two month angelversary, we suffered through Christmas. On her three month angelversary, I spent almost the entire day in bed, barely able to move, speak or think. So when we planned to go to the Wisconsin Dells over her four month angelversary, I was legitimately concerned about the success of the trip…

A Short Film: Documentary
Written and Directed by Tiffany

“Why You Shouldn’t Ever Take Your Autistic Two Year Old to the Wisconsin Dells on the Four Month Anniversary of Your Daughter’s Death.”

I’m still working on the title…

Scene One
After three and a half hours in the car Daddy, Mommy with a severe headache and Son, who only slept for about twenty minutes, arrive in an overflowing parking lot. Daddy heads in to get keys and returns with a map- a map to find the room.
Family drives through parking lots and find last available parking spot. After two trips with luggage cart, they start unloading their things into their room, which smells like stale donuts and bacon. They unload one large suitcase that contains parent’s clothing, one small suitcase contain Son’s clothing, one small suitcase containing Son’s books/ toys/ fidgets/ Wonder Pets DVDs, one port-a-crib, one booster seat, one small cooler with Son safe food, two beach bags full of towels/ cameras/ a lot of other crap, diaper bag and large plastic tub with Son safe and approved food, silverware and cups.
Family is planning on staying for two nights.

Scene Two
Son eats snack after he finds ladder on the bunk beds. It is discovered that Mommy forgot Cheerios but Son is quickly pacified with blueberries and Puffs (kiddie crack).
Mommy and Daddy examine map. It is also discovered that Family’s room can’t possibly be any further from all waterparks, activities and food.
Small bag is packed and family heads out.

Scene Three
After navigating two hotels worth of hallways, the family finds the Dry Indoor Playplace. Mommy discovers that all seating is directly in front of the toddler area in which they allow one year old girls to play and has a large turtle to play on (Mommy and Daddy used to call Daughter turtle). Loud sounds of suction fill the air from the “ball fountain.” Son does not seem to like the loud noise.
Mommy and Daddy take turns squeezing through playplace with Son, who is mostly interested in moving the soft foam balls from place to place. Anyone who disturbs this process is promptly met with screams and tears.

Scene Four
One staircase, a bridge and hallway later the family arrives at restaurant. Mommy asks waitresses if they have allergy information. Mommy is met with blank stares. Mommy explains Son has milk allergy and she needs to know what he can eat. Mostly she needs to know if he can eat the fries. Mommy is told no. No to allergy information, and no to fries. Mommy thinks, “Holy Hell! No fries?!”
Family sits down and begins to feed Son the standbys they brought. Waitress checks fry box and discovers the fries are safe. Yes! Yes! Yes!

Scene Five
Many, many, many hallways later, family arrives back at room to change into swimsuits. Mommy must “brush” (a new OT therapy) Son before changing him into swimsuit. Brushing and joint compressions should be occurring every two hours. It will soon be seen that Mommy forgets.

Scene Six
Hallways. So many freaking hallways. Family walks and walks. More hallways. More walking.

Scene Seven
Waterpark #1.
Family finds last available table. At this point Mother has noticed height restrictions on tube rides exclude Son from participation. Family excitedly heads towards the water and find it to be FREEZING COLD. Son immediately starts to shiver and shake. Son discovers water to be dripping or pouring from nearly everything overhead. He is obviously displeased.
Son climbs up structure once. There is one slide he is interested in. Lifeguard says he must go down large tub slide by himself. Mommy laughs and steers Son in other direction. Son finds small slides. He is amused for small amount of time.
Son spends the rest of time wandering around aimlessly. Mommy spends the rest of the time trying not to stare at the one year old in her blue and pink ruffled swimsuit and her chubby arm wrinkles. Mommy is not successful and fears she will soon be considered creepy. As if sensing this, Son decides “all done.”

Scene Eight
Back through the hallways. This time Mommy and Daddy notice the “trashiness” of fellow tourists and their lack of modesty. This however, provides amusement for the Mommy and Daddy that must now carry the Son who has suddenly refused to walk.

Scene Nine
Hotel Room.
Son is bathed and jammied. It is about 45 minutes before bedtime and Son has freetime. Son intends on using this time to try to escape out of the room or climb the ladder in his room to the top bunk, which his parent’s discovered- he can do. Son does not respond to the word No.
Many tears later, Mommy bribes Son with Puffs to sit on couch with Daddy and watch Wonder Pets. Son eats Puffs, gives Mommy the finger, and gets off the couch.
After a while it is time for bed.

Scene Ten
Hotel Room. Next Morning.
Daddy experiences oatmeal disaster in microwave and Son then refuses to eat oatmeal. Mommy tries not think about what they were doing four months ago. Family heads down only two hallways to coffee shop and buys Cheerios (Praise the Lord!) and breakfast for Mommy and Daddy. Mommy and Daddy eat and try to kill time until ten am when the waterparks open. Mommy thinks, “Ten a.m.?!” Meanwhile, Son screams outside of bedroom door that has been locked to prevent ladder climbing. When the appointed hour arrives, the family dons swimsuits and heads out.

Scene Eleven
As the Mommy and Daddy walk down hallways they carry Son, who again refuses to walk.  Should son be set down, louding screaming and stomping ensues. He does however continuously recite the Animal ABCs.
After several hours, days and weeks of walking, the family arrives.

Scene Twelve
Waterpark #2.
Family easily finds table. Family heads to water and find it to be pleasantly warm. However, something does not sit well with Son and he refuses to be put down in the toddler area.
Family moves over to the wave pool. Fear and terror abound.
After stepping on a used band-aid, family makes a quick exit.

Scene Thirteen
It is like the movie, The Shining. But with more hallways, more strollers, more little girls, more running adolescent boys, more inattentive parents and a lot less clothing. (red) Rum is definitely sounding good to Mommy.

Scene Fourteen
Waterpark #3
Family finds a table not next to the toddler area where there are bouncy swings which Daughter would have adored. Son charges toward water, obviously excited. Son steps into water. Son cries when he finds it to be FREEZING COLD too! More dripping water from overhead.
Son wanders without purpose until he finds the steps. Son spends a large amount of time going up the two steps and back down again. Daddy takes Son down the one slide he can go down. Son hates it. Son says, “all done” and Mommy steps on used band-aid.
Family makes quick exit.

Scene Fifteen
More effing hallways.
Son refusing to walk. More Animal ABCs.

Scene Sixteen
Hotel Room.
Daddy calls reception desk. He says they need to check out, due to a family emergency. Daddy and Mommy both know there will be a family emergency if they don’t leave NOW. Family quickly showers and packs.
Two luggage cart trips later, family is packed up.

Scene Seventeen
Mommy and Son sit in car while Daddy checks out.
Daddy drives car to other side of resort so Son can play at Indoor Playplace before sitting in the car and family can eat lunch.

Scene Eighteen
Indoor Playplace
Son and Daddy play while Mommy sits at the ONLY available spot- the padded bench around the toddler area. Mommy tries not to watch the light haired, fuzzy headed one year old toddling around in HER footie pajamas. Mommy is ok until the girl starts babbling and smiling. Mommy’s eyes well up with tears. Mommy tries to focus on watching Son who is obsessing about the foam balls and stimming like crazy.
Mommy notices another baby, belonging to what appears to be a fifteen year old mother. Baby starts crying. Young Mother hands the baby to who appears to be Grandpa and walks away.
Tears escape Mommy’s eyes. Mommy quickly wipes them away.
Mommy hears the toddler’s mother say to her, “Come here Ellie! Ellie. Come here Ellie!”
Mommy loses it. Mommy cannot stop tears.
Daddy notices Mommy. Daddy decides it time for lunch.

Scene Nineteen
Short Hallway.

Scene Twenty
Mommy positions herself so most of the restaurant is to her back. She can only see two teenage girls. In her periphery is a large group including one year old girl. One year girl’s voice makes it very hard for Mommy to concentrate.
Family orders and begins to eat. Son reciting Animal ABCs and Wonder Pets.
One year old girl’s Father pushes empty stroller into Mommy’s site. Mommy notices blanket sitting in empty car seat. It is the same blanket that Mommy and Daddy left Daughter’s body on four months ago. It is the same blanket that covered Daughter’s casket at her funeral.
Mommy feels the world closing in around her.
Family finishes meal and heads to car.

Scene Twenty One
Montage of thrashing toddler, sleeping toddler, Animal ABCs and nuk finding attempts.

Scene Twenty Two
Family car pulls into driveway.
Mommy vows to never ever do that again.
Daddy starts unloading car.

And in case you are wondering…
"A. A. Alligator.
B. B. Bumble Bee.
C. C. Caterpillar.
D. D. Duck…"

Thursday, February 24, 2011

Missing You

Dearest Ellie,
Four months ago we were in the ER at Children's. The doctor and nurses put on a calm and controlled face but their eyes gave them away. They were scared for you, just like I was. We kept throwing out possible causes for your illness; meningitis? leukemia? viral infection? No one knew what was wrong. But something was very wrong. The bruises kept coming, the red spot on your head growing by the minute, your color slipped away from your lips. Your breathing was hard to listen to and the respiratory therapist stood at your head, ready to intubate. The numbers on the monitor didn't lie, you were so sick.
I have never in my life, been more scared. I would have given anything to switch places with you. It wasn't fair, you were so tiny, so scared and so undeserving of such a horrible thing.

On the 24th and 25th of every month since you left, I can feel it. The weight of that day pushes down and the memories flood back like it was yesterday. Sometimes I wonder if the pain of these memories are the punishment I must suffer for not being able to help you that day. I'm your mother and my job was to protect you. I'm sorry I couldn't do it Peanut. I wanted to- more than anything, I wanted to. If I could have done something I would have.
I'm sure you know how much we love you. Every day I think about you and miss your little face smiling at me when I go to get you out of your crib. I miss that ear that sticks out more than the other one and your growls.

"I'll love you forever.
I'll like you for always.
As long as I'm living,
my baby you'll be."

Love you Little Girl,

February 24, 2010
Silly Baby Faces

Wednesday, February 23, 2011

Ellie's Star

It's hard to believe that four months ago we were at the Children's Museum with two healthy kids. I remember sitting on the floor with Ellie waving colored scarves around her head. I can still picture her sweet smile through the pink scarf, her arms extended upward to try and reach it. She would let us put the scarf over her head and just sit there for a second. Then she'd grab it and pull it down with a huge, goofy grin. That girl loved peek-a-boo. In my mind, it plays back like a movie, one of the last vivid memories I have of our happy, healthy girl.
That morning I was supposed to have a massage. Our lives had been kind of stressful and Dave scheduled a massage for me so I could have a little break. For some reason, I didn't want to go, I didn't want to be away from the kids. Instead, I decided I wanted to go somewhere fun with the kids. I can't tell you how glad I am that I chose the museum with my babies instead of my massage. I would have never forgiven myself for being away from her that last morning for something as stupid as a massage. Looking back, my need to be with Ellie that whole day, was the only sign I had of what was to come. I still can't believe we moved through that entire day, never knowing what was coming...

For the last four(ish) months, I have been piling things into the port-a-crib on our porch. Ellie didn't spend a ton of time in the crib but I would put her in there while I cooked to keep her from throwing all of the toys out of her reach. In the days following Ellie's death, I put some things in the crib so Max couldn't get to it. At first it was things like gifts in memory of Ellie, posters and pictures from the funeral, her guest book, deflated balloons, stuff from her grave site. Over time I added some of her things too, the sweater that sat on the back of the chair in the living room that she wore two days before she got sick, her stocking cap, the blankets from the hospital, her diaper bag.
Last week, I went through everything and put it into storage tubs. It was hard to go through everything, deciding what to do with her things. My heart wants to save everything she ever touched or that was even near her. I want to keep anything that reminds me of her or may someday remind me of her. My mind though, resists the idea of keeping certain things. Funeral programs, funeral folders, the blanket from the hospital that we left covering her. I put these things into the tubs anyways, I know someday I will want them. Maybe it is just so absurd that I have funeral and death mementos instead of a toddler, that my mind can't make sense of it.
As I sorted through the port-a-crib, I looked at the funeral program and folders. The program is the schedule for the service: hymns, scriptures, etc. The folder had Ellie's pictures, some poems, family information and a note from us. It broke my heart to look at those. I can still picture Dave and I sitting in front of the computer, trying to figure out the best way to say good-bye to our baby. There aren't really the right words for this kind of situation.
But while I was looking at the folders, one poem made me smile. And it made me smile because of a gift that we got earlier that day from one of Dave's former co-workers.

When we picked out poems for Ellie's folder and service, we wanted words fitting for a baby. A bright, happy, joyful baby. And when we found this one, we thought it was perfect...

And the gift we received made it that much more fitting...

They had a STAR named after Ellie! It's perfect. The star's new name has been added to the International Star Registry and if we are ever able to figure out this star chart- we will be able to look up in the sky and see her star. This is an amazing gift. To have Ellie's memory preserved in this incredible manner makes me so happy.
A bright star in the dark night's sky is the perfect way to keep Ellie's light shining.

Tuesday, February 22, 2011

A Peek Into Heaven
By Callie Sanders Thornton

Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
And heaven seems so far away.

Is she playing on the clouds with angels?
Is she laughing and running today?
Does she miss me?
I guess only she knows.

Oh why does heaven seem so far away?
If you just let me look for a moment,
To catch a glimpse of her sweet smiling face,
I promise I won't try to take her,
I know, she's in a better place.

just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
And heaven seems so far away...

My cousin Kaelin read this poem at Ellie's funeral.

Remembering February 22nd, 2010

A morning in the playroom....

Despite Ellie's intense hatred of tummy time (even on the boppy), she managed to fall asleep while Max ran wild around her.
 Creepy open eye sleep....
 That's better.
 Of course her paranoid mother had to flip her over and make her sleep on her back. Yes, I was sitting right next to her- but paranoia is often stronger than reason. In my defense, she had reflux...
 After a catnap Ellie was up for a little time on the playmat...
 Guess it's time for another nap...

Monday, February 21, 2011

Caught on Camera

Every day as I look through the folders of digital pictures on my computer I am either greatly disappointed that I let a day pass without taking a picture of Ellie or greatly appreciative of the little moment I did manage to capture. It doesn't matter if it's a horrible out of focus picture or the world's greatest photographic accomplishment. Any picture of my Elle, is a picture of my Elle. And it preserves what I fear will someday slip away from me. Even if I have looked at a certain picture a hundred times since Ellie died, it still brings me peace. I still see something knew to be in awe of.
The pictures from one year ago today are no exception. They are the first pictures of Ellie smiling we have. She had been smiling for a couple days already at this point but I either wasn't quick enough to get the camera or I was too captivated by her beautiful smile to care about the camera. Even the pictures of her yawning I treasure. Who doesn't love a baby yawn? Pictures of a bare babe in the tub- treasure those too.
Of course, I wish there were more pictures of Ellie. I wish she was here to take pictures of for the rest of my life. But I am so thankful for the images we do have. Without them, so much would be lost with the passing of each day.
Ready for cute baby smile???

Remembering February 21, 2010
 This is happiness.
 Trying to get her to smile again- instead I got a her little tongue peeking out and a yawn!

 Baby in the Bath!

"Mom! Stop taking my picture and feed me!"