The certificate listed her immediate cause of death as "pneumococcal sepsis." We knew this- this bacterial culture came back positive before Ellie was started on the ECMO machine. Ellie had an overwhelming bacterial blood stream infection that her body could not fight.
The certificate listed her underlying cause of death as "hyposplenism." This was a surprise. Without having the autopsy results, we can't say for sure what this means. It either means her spleen was smaller than normal or was functioning at an inadequate level. Pneumococcal sepsis is often a cause of death in infants with hyposplenism.
Guilt. A lot of guilt. Hyposplenism should have been easy to detect with a few simple tests. Although we never had a real reason to test for it- I always thought there was something different with Ellie. She got what seemed to be really sick from minor normal childhood illness. She had an infected toe, ear infection, many colds, an ER visit requiring IV antibiotics and gastroenteritis. She was only nine months old. I feel like as her mother it was my job to protect her. I should have listened to my gut. My intuition is usually right in these sorts of things. I'm her mom- I should have known there was something wrong...
Today pictures of my Elle Belle have been helping a lot. Our friend took pictures (K Holly Photography) several weeks ago... They are stunning and so precious to us. As I said, I always felt like there was something different about Ellie. I never suspected we would tragically lose her 9months, but I always had this feeling her life was different than the rest of ours. She was so perfect. The best baby anyone could ask for. Great sleeper, good eater. Terribly cute. Such a ham. Chunky thighs. Pudgy fingers. Amazing blue eyes. We are drowning in sadness but tonight I can't help but think how lucky we were to have Ellie for those 9 months, 9 days, 14 hours and 16 minutes. I am so lucky to be her Mama.
I love you Peanut!
11 comments:
Well, she is having no problem fitting in up there in heaven. She is ANGELIC in these photos. Beautiful baby girl :)
I was thinking the same thing when I looked at these pictures. She already had this look in her eyes that was so angelic...so striking! I am so glad you got these pictures taken, such great memories to hold onto right in front of your eyes.
Thinking of you as everyone is.
HUGS!!!
Tiff; You were lucky to have her and she was lucky to have you. You did everything you could to make her world the best it could be, so don't beat yourself up thinking you failed as a parent. You and Dave were and are great parents, and Max needs you more than ever. So please think positive and be the great mother, wife, daughter, grand-daughter that you have been, can be and will be. Love Dan
Tiffany,
The pictures of your sweet Ellie are beautiful! I think about you and your family every day and look forward to reading your blog when I wake up in the morning :). I am sure Ellie is looking down on you and so proud of your words expressing her wonderful life and the memories you shared.
Melissa Weaver
Tiffany,
A friend of a friend of yours emailed me your blog. I've cried countless tears for your family. I am simply unable to comprehend what has happened to you. And at the same time, I have these sweet visions of your beautiful Ellie dancing, laughing, and singing down the streets of gold in heaven. I pray for your family that you might experience those glimpses of her as well - perhaps now, perhaps with time. I think about and pray for you continuously throughout each day. Know that you have people you've never met and probably never will meet lifting you up in prayer and loving your family from a distance.
Laura Vincent
You are your family are in my thoughts and prayers. Ellie is absolutely beautiful and I know she is smiling down on you from heaven. God bless you all.
Tiffany and Dave,
When I read your words "Guilt. A lot of guilt" I understood exactly what you mean. We felt it when we didn't discover our son had an autism disorder until he was 10 years old. We just thought he was "different" and we loved our unique little guy all the same. But as our frustration grew over his lack of development so did our feeling that we should have known better that something might be "wrong" with him.
Now, 20 years later, we understand so much about why our son was, and is, who he is. There is no more guilt about it, no unreasonable expectation for ourselves as parents (or you as a nurse, Tiffany) that we should somehow know every possibility, see every potential problem.
You loved Ellie in the way good parents do. And Max will receive that same love from you, even when he can't express it back to you.
May your home be filled with love, peace and a sense of this world and the next coexisting.
My thoughts and prayers are with all of you here in Virginia. A friend forwarded your blog to me and I sat at my desk and wept over your sweet Ellie and your loss. Be strong!
I am sooooo sorry this happened to you. You did not deserve such a sad thing in your life. I hope you and your family will continue to heal and find joy in living. Writing is good and I'm glad you're sharing your journey. Ellie is beautiful!!! I'll be thinking of you and saying a prayer for your family.
P.S. I also hope you will write about your son as well. I have two children with autism (and two neuro-typical children) and it has been quite a journey! Maybe we can share a little of that together!
Tiffany there are others out there that understand your agony and the myrad of feelings that change by the hour. My son Carter Geyen died at 12 years old, 3 months ago. He was hit in the chest with a rock at the playground and had a cardiac arrest. I have read your posts. You articulate your feelings in an amazing way. When I read the details of your ER experince, it brings it all back. I too speak "nurse" and understood, in a sickening way what was going on that my husband did not understand. I found it really, relieving, I dont know, almost like taking the cork off, to re-live the details. I wonder if you do too. I hope you continue to just yell it out, that your baby died, that you were cheated, whenever you need to. It helps. It relieves the pressure that builds in you, thinking of it over and over and over. Your daughter is so sweet. I love the picture of you and her, with the sunlight in your hair. It is almost a surreal kind of happiness, angelic-like state of grace we dont realize until after. We had similar ones of our family recently. Maybe that is Gods way of giving us a gift to look back on. I pray for you and your husband, that you find peace. A friend of mine wrote, your child moves from by your side, into your core. I hope Ellie finds that space in your soul and settles there to give you comfort.
Karolyn
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