It all happened so fast. In just 25 hours we went from having a perfectly healthy baby girl (or so we thought...) to telling the doctor it was ok to unhook her from her life sustaining machine. It's something you think can never happen to you.
When Ellie's intensivist and surgeon sat down to tell us there was nothing else they could do for her and to ask if we wanted CPR, I think I actually let out a laugh. Not a big belly laugh but a short "HA." When I used to try and understand how my patient's parents felt when they got this awful news, I always thought I would crumple into a sobbing, hysterical pile on the floor. But I didn't- I laughed. I even told the doctors it felt like we were talking about how to best treat a broken finger... tape or splint?? It was the most surreal, strange- I don't even know how to describe it- moment of my life. It's like we were standing over on the other side of that cold, empty room watching ourselves speak with the doctors. It almost felt like I was watching certain parts in slow motion.
It's crazy how easy it was to make the decision to withhold CPR. Well, it was one of the hardest decisions we ever made but we knew what the right answer was immediately. We knew we had put her body through so much already, she was already unrecognizable, we knew she was already gone. We knew CPR and electrical paddles would only put her little body through more trauma, and in the end, nothing was going to save her. It's crazy that we so easily made such a horrible decision. It's crazy that we even in the position to make such a decision.
It's ridiculous that as a 27 year old, I planned a funeral for my 9 month old and that my husband and I have toured most of the nearby cememtaries. It's unbelieveble that we have written an obiturary for our BABY.
Sometimes I pause, look around our house and wonder what the hell happened to our life. Instead of spending my days running to Target, the co-op, and frantically trying to get chores done between feedings and naps, I try to track down an autopsy report for Ellie, schedule Max's autism therapies, and research how to start a charity in Ellie's name. I feel like my life has turned into a Lifetime movie.
The other day, the Minnesota Department of Health called. All deaths caused by an infection are reported to the state. The lady needed to ask me some questions regarding Ellie's death and then asked if I would be willing to answer some questions for a current study they were conducting on the new pneumococcal vaccine. I, of course, was more than willing- who wouldn't want to help someone else from being in our shoes. I answered all of her questions and at the end she said, "Thank you for your time Mrs. DeRoma. As a token of our gratitude we will be spending you a $20 gift card to Target. Thank you and have a great day." Seriously?! How weird is that? As compensation for answering questions about my dead daughter, they are going to send me a gift card to Target?! "uhhhh.... ok....." was all I could say to her. That has to be the most bizarre conversation I have ever had in my life.
I'm sure it's all going to start feeling more real soon, but now, it just seems like this strange, bizarre, never ending dream. Who starts out a weekend at the Children's Museum with their kids and ends their weekend by giving a doctor permission to turn off life support on one of those same kids?! Who has to bury their perfect nine-month old?! Like I said, there just aren't words for this. Absurd, bizarre, ludicrous, ridiculous, strange, surreal... none of them are good enough... messed up... screwed up... effed up... those seem to fit a little better...
Elle at swim lessons on October 18th. I had no idea how different our life would be just one week later...
October 29th.
Like I said... effed up...
2 comments:
Truly beautiful and heartfelt . I do not know what else to say, but thank you for sharing your journey and keep up the good work. Thank you.
I love the idea of a charity in your daughter's name. Thank you for continuing to share your story.
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