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...