Tuesday, October 25, 2011

One Year Ago

It's been a very long couple of days... we are very lucky to be surrounded by such great friends and family. Last evening we did a lighted balloon and lantern release- it was very beautiful. Tomorrow I will share some pictures. We have also spent a lot of time the last few days working on projects for the hospital. Distraction has definitely been the key... But I feel like I'm in a place of sadness and missing her, that I haven't been in in a while... I just want my girl back...

It's almost impossible to think that one year ago, at 2:58am, we let the doctor clamp the tubes on Ellie's ECMO machine and only seconds later, she was gone. Forever. The last week has been very emotional. I have been crying a lot, angry, irritable and sad. I don't want to relive it. The things that we saw happen to our girl that day are unspeakable.
I had a thought yesterday that I hadn't had in a while... what if this was all just some horrible prank, experiment or test?? What if Ellie really was alive, and now that we'd survived a year, we could have her back... When we were told to go wait while they spent hours hooking Ellie up to the ECMO machines, Ellie looked like Ellie. She looked like a paler, puffier and slightly gray version of herself. But when we came back in to see her after everything had been hooked up, she was unrecognizable. Her skin was a dark purple and so taught, I thought it would just burst. Her eyes, mouth and ears were swollen shut. She looked fake. If it wasn't for her crazy hair -that was coated in gel from her brain ultrasound- I would have refused to believe it was her. The staff could hardly even look at us. Dave couldn't stay in the room. I went to the sink and threw up.
It was bad enough she had to be so sick, but it was like someone took our girl away without even letting us say goodbye. Who knows- her appearance is probably the only reason I was able to leave her at the hospital that night... I barely believed it was my daughter anyways. I refuse to let myself think about how she looked with her breathing tube removed or discuss it with it with anyone- those who were there that night know... I'm not exaggerating when I say that these things are unspeakable... the English language does not have the words to describe the unfairness, ugliness and horror of the things that happened to our beautiful, joyful girl that night.
Almost every day I think about our friends that came to the hospital that night to support us and the things they had to see. Of course, our family saw them too- but they are family, their presence that night was never discussed- they would be there. But our friends could have said no. They could have said- it's too much. But they didn't. I'm not sure if they have nightmares, or if they are as scarred as I am from what I saw, smelled, and heard that night. But they walked into an indescribable situation that night, and never once backed down... It was all of the bad things you see on TV, watch in movies, learn about in med. or nursing school, and imagine as a parent, rolled up into 25 hours of non-stop and unexpected hell. 
At some point on the 24th, our parents left to go home for the night- we had been told she was stable. They were wrong... We walked our parents out to their cars and to get some stuff from ours. I took a picture out of my wallet of Ellie and brought it back to her room. I asked the nurse to put it up so they knew what our girl really looked like... We put that picture on her legs when we were holding her during the end, just so we could look past what we were seeing... I look at the few pictures we have from that day and can't believe they are the same person... My mind, fortunately, cannot converge the two baby girls in the pictures...

I want to share how bad things were that day, not to make people feel bad for us- I don't care about that- but to give people a dose of reality. Not every child just peacefully takes their last breath and passes away... Sometimes death is ugly, brutal and harsh. When a child passes away, medical personal try everything to prevent it. We, the parents, are then left to deal with the aftermath of what that looks like on our innocent children. Some children have long, exhausting battles, and some, like Ellie, have short but highly intense battles. Dying of sepsis, like Ellie did, is a particularly brutal way to pass away- fortunately most kids at least resemble themselves while parents say goodbye. But the unexpected death of a child (and some expected) in the hospital is NOT the same as an elderly person peacefully falling asleep at home. We are left with so many more questions and much more trauma. We need more support, especially in the last moments of the child's life or in the sacred hours that follow. That is why Ellie's Light is so important to me.
If I can take even just a little bit of sting out of the pain a family experiences and carries with them, it is worth it. The hospital was largely unprepared for a situation like ours- we left with very few mementos and the things we brought home were so thoughtless and almost insulting... We weren't able to do Ellie's hand prints because her hands were so swollen we couldn't flatten them, so we just did footprints. They aren't even very good. A lock of her hair- that I asked to collect- is in a small plastic baggy- all separated. We have the last comb we used on her hair... that's pretty much it... I want to give some families at least a little bit of comfort in the midst of such pain and anguish.

I thought a lot about sharing the pictures we have of Ellie and our last time with her at the hospital. There are only about six digital pictures. The hospital took some very, very poor quality ones that we have printed, but otherwise we just have the ones from our digital camera. (We asked for Now I Lay Me Down to Sleep but were told they didn't exist... yeah...) We don't have any pictures of Ellie's face from that day- I refused to let them be taken- it's a memory we didn't need... But we do have pictures of her body as a whole (like the back of her head and her body while we are holding her). We will never share those pictures. We do NOT want anyone to ever think of our little girl like that. I did have one picture of me holding her hand that I wanted to share, but Dave wants to keep it private- so we will... I edited our pictures and took Ellie out of them but I still think it's important to share them so people can get a small glimpse of how painful it is to be with your child, in the hospital, saying goodbye...

 Holding our girl for the last time...


These are just half of Ellie's IV pumps- she had about 6 total... She was also hooked up to a ventilator, and a very large ECMO machine. We were told that Ellie was probably the sickest person in the state- she was getting everything she could possibly receive in an attempt to save her, and later, just keep her comfortable... She was a small little girl, surround by medical equipment and hooked up to more tubes than I could probably count...

It's hard to believe that all of this happened to our Ellie, to us, one year ago. I miss my girl so much everyday, and I would live through the pain of those early days over and over again if it meant I could have her back for even one second... I pray that we never have to live through anything half as painful and traumatic as it was that day one year ago...

27 comments:

LauraJane said...

Oh Tiffany, I am so sorry for the horrors you and your family experienced with the loss of Ellie. Those photos are so freaking "real" it's hard for me to see them. Jack was hooked up to those same IVs and after they had determined there was nothing more they could do, they began to take them down, one by one until there were only a few left. We didn't see him after his organ donation surgery because I just couldn't bare to see him. But I know just what you mean about not recognizing the baby before you, even though you know it's yours.

Scott tells me he sometimes thinks he is living The Truman Show, and losing Jack was part of the drama. He hopes when I'm at "work" I'm really with Jack, and that Jack is alive and thriving. Breaks my heart whenever he mentions.

Anyway, thinking of you and your family, especially your girl.
xox

Kelly said...

This brings so much back to me from when Adam passed. It doesn't sound like he was in the same shape as Ellie, but I also did not recognize him or his body. He was gone before he was truly gone. I see me and Jim's faces in the faces of you and your husband in that last day. Same machines. Same horrific sights. There was so much in this post that I was just nodding and saying, yes, yes, yes. So many similiarities. I feel you so much Tiffany.

I have been thinking of you so much today. Love you.

Just the Tip said...

I do not fault you for wanting to share your experience, it's Ellie's story to be told, whether or not it was pretty.

I am so sorry the hospital was not equipped to do everything they could for you, as her parents.

I think Ellie is one of the stories that has touched me the most on the internet.

I don't know if it's her similarities before she was sick (the infections, etc) to our girls, or how quickly it all happened, but believe me when I say I have shed many tears over your precious Ellie.

I know you don't usually post my comments because i'm not a BLM (atleast I don't feel like they ever get posted) but even though I have never experienced a loss in the magnitude that you have (ie, whole world). I truly truly truly would do anything I could to help you and I cannot say how sorry I am that this all happened.

If it makes me feel the way I feel, I cannot imagine how it affects you, her mother. You are so strong and I know Ellie will be making a big difference in many lives to come.

Again, I'm sorry. I know words can't even begin to touch upon how you feel.

Deanna said...

sending you so much love today and always. we will always remember Ellie with you. her sweet little smile warms my heart. I am so sorry she is not here with you. lots and lots of hugs, dear friend.

Boo's Mom said...

I thought of you, your family and especially Ellie all day today. My heart is breaking for you, I have no words. What you have experienced is even worse than a parents worst nightmare. This isn't something that should happen to anyone. I thought of you as I was putting my child to bed tonight and I lingered in the room a little longer just remembering that there are Mama'a out there in the world that ache to hold their children again. I pray that you feel Ellie's presence today and in those moments when you really need it. Sending you love and prayers.

-Laura

Ellie's Light said...

Just The Tip- I don't approve comments on my blog before they are posted- they are just automatically posted by Blogger... I'm not sure why yours haven't been posting- sorry about that... It's not me though! Thanks for reading along.

Jen said...

On my way to work this morning I heard "Rhythm of Love" and my thoughts immediately went to Ellie and to you. I hardly ever hear that song so it seemed ironic that I heard it today. Thinking of your sweet girl and of you.

Raquel said...

Thinking of you and sweet Ellie today! Hugs!

Robin said...

I am so sorry for your pain. I know my words won't help, but know I am praying for you and your whole family.

ccc said...

Oh, such sad sad pictures. I understand you wanting to keep pictures of Ellie private. I feel for you and your husband, and your mom too.
How very sad for a little girl to be taken in such a brutal manner.

The Zoo said...

Words can not express how sad I am that Ellie is gone. That any of our children are gone. Thank you for sharing so honestly. Reading your words reminds me of my feelings for Alexander. I think about him all the time but don't often feel... It's so hard. Even so, it's all that I have. Thank you.

Caroline said...

so very sorry for all the pain you've endured. will be thinking of Ellie today and holding you all in my heart.

Macuil said...

i thought of Ellie all day today and sadness would take over me so I decided to go out for a run and I ran 9 miles in honor of Ellie for the Short nine months that she was here on earth with you.

I pray for you often, for peace, for love, hapiness and that one day you will be reunited with your beautiful baby girl.

Many Hugs from Texas.

Jennifer said...

My heart breaks over and over again for you, your family, for your sweet, sweet Ellie. I am so terribly sorry. There are no words. I am just so, so sorry.

Diane said...

I've thought of you often this week, and pray for peace and healing for you and your family. Sweet Ellie's Light will shine through you, Mama! You are doing an amazing thing in her honor, and she will touch many lives in their darkest hours.
Thank you for sharing her with us here.

Natasha said...

These pictures just break my heart Tiff......I am so sorry for all you guys have been through. You are so brave to share Ellie's story from that day.

Love you friend. You and Ellie are in my thoughts and my heart ♥

Tiffany said...

Thinking of you & my birthday twin Ellie! Love you.

Ashley said...

I'm so very sorry!

Harlowe said...

This is just so heartbreaking. I don't think any of us really need to see Ellie like that to realize how horrific this is. Thinking of you today and every day.

Mandy said...

Ellie is so much more than her last hours on this earth. She is remembered by many as a beautiful little chubster with a "light up the world" smile and a mother who loves her without limits. Nothing can erase any of your memories of her but it is my sincere hope that in time these final memories will slide in behind all of the beauty you have shared in your words and photos of sweet Ellie.

Ashley said...

Those pictures were incredibly hard to look at, I can feel every ouce of what you are in those photos and it brings back to many memories for me.

I have been waiting and thinking of what to say to you yesterday and I just couldn't think of anything to say to help you feel better. I am so sorry that you and your family are dealing with this. I hate it that other moms are feeling what I have and am. It's completely not fair that your daughter isn't here with you and your family. I do know that she is watching over you and is completely proud at how well her parents are coping and dealing with her loss. You are amazing and strong and I am so glad that I have "met" you through this incredibly hard experience. Totally thinking of you ((Hugs))

B. Wilson said...

I have nothing but love to offer. I believe you when you say that what you saw was indescribable. That should never be the case.

You had/have no choice but to be strong in this. What other options are there? I am so terribly sorry.

Becky Baker said...

My eyes are heavy with tears!! I am so so so sorry for you loss Tiffany! Looking at your photos and reading your post brought way too many memories back of my daughters birth and death date!
I am so sorry for all youve been through! We shouldn't have to experience such tragic loss!
My thoughts are with you!
Hugs

NewYearMum2.blogspot.com said...

Dear Tiffany... I'm so so sorry that you had to go through such an horrific nightmare and have these memories in your heart. Your photos brought tears to my eyes to see the pain that no parent should ever have to go through... my heart and thoughts are with you and Ellie today and always xoxo

Beth said...

I have no words that are adequate. Thank you for sharing this story. It is an important one for everyone to hear. Thank you to your friends and family for abiding with you. Making wishes for you and your beautiful family.

Sarita Boyette said...

Tiffany, I tried to post a comment on this the other night & for some reason couldn't. Just wanted you to know that I thought of you all so very much and wished upon wish that this was not reality for you. Like the previous poster, I know my words are inadequate. Although we have never met, we are sisters in the human race & I care about you. xoxo

Kristin said...

I am way behind and catching up...I am just bawling Tiffany. I am so so sorry for all that you and your precious little girl had to go through that night. You are so brave for continuing to share her story and make a difference for other parents facing the unimaginable. XO

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