Introductions….

Thank you for stopping by – let me introduce the players:

I’m Amy.

In my dreamworld, I paint and draw and enjoy photography. I sew beautiful quilts. I read and garden and listen to music. I exercise and eat healthy. I spend time with my kids that is both, relaxing and meaningful. I spend time with my husband watching movies and snuggling in bed. As a family, we go camping and bowling and enjoy making each other laugh.

In the real world, I’m a stay home mom. I have 6 kids. My husband, Jamie, works 3rd shift maintenance at Wal-mart.  I’ve spent more time camped out in the hospital than camping in the woods.  Time spent with the kids is centered around homework and chores and eating meals. The last time I snuggled in bed with my husband without a child present – George Bush, Jr. was had just taken office.

We still make each other laugh.

My oldest child and only daughter, Veronica, is 20. She lives in Chicago and attends college there. I don’t see her as much as I’d like. Do we ever once they have their own life?

Tom is my oldest son, he’s 17. He also lives in Chicago, with his dad. He loves computer games and plans on going to college to learn how to develop them.

Jacob is 7 and he’s in 2nd grade. He loves computer games, playing outside and he’s an awesome speller!

Jonathan is 5, he’s in kindergarten. He loves computer games and his daddy’s 1973 corvette. Ask him – he’ll tell you it’s his car!

Zachary is 3. He has a mild obsession (sarcastic *grin*) with Thomas the Train. He knows each train’s name and color. He is the rainman of toy trains.

David is 5 months old. He likes to swing and snuggle with his stuffed Zebra. He’s a good snuggler.

Okay. I could stop there. I could pretend my life  resembled something normal.  But then I wouldn’t be sitting here typing, at midnight, in a hospital room. I’d be snuggling with my husband.

Do you have kleenex ready? I think you’re going to need it – I know I will….

deep breath……on August 24, 2001 our son Nathaniel James was born. On August 29, 2001 our son Nathaniel James, passed away.

5 days, that’s all I got.

What we didn’t know until it was too late, was that Nathaniel was born with a Urea Cycle disorder called Citrullinemia. All the nurses had marveled at my quiet boy.  Looking back, I realize he was aleady in a hyperammonemic coma, when we brought him home on Day 2.

A urea cycle disorder is a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream. The urea cycle involves a series of biochemical steps in which nitrogen, a waste product of protein metabolism, is removed from the blood and converted to urea. Normally, the urea is transferred into the urine and removed from the body. In urea cycle disorders, the nitrogen accumulates in the form of ammonia, a highly toxic substance, and is not removed from the body resulting in hyperammonemia. Ammonia then reaches the brain through the blood, where it causes irreversible brain damage, coma and/or death.

This was exactly 1 year prior to Illinois mandating the newborn screens that hospitals now rely on.

We brought Nathaniel home on a Monday afternoon. He was sleeping when we left the hospital. I have pictures I took just before we left of him sleeping in his going home outfit. My quiet boy never woke up. He never cried, he had no wet diapers and he didn’t take any formula once we left the hospital. He slept though to Tuesday morning. By then he was breathing fast and shallow, making little grunting sounds. We took him to the pediatrician, which was only a couple blocks from our house.  I was suspicious that he was sick, but I’d had 2 healthy children, the thought of something being  fatally wrong with my baby hadn’t crossed my mind.

As soon as we entered the pediatrician’s office – they called an ambulance. His ‘grunting’ was an indication that something was majorly wrong. The doctor wanted the ambulance to take us to the closest level 1 pediatric ICU, which was Loyola, 20 minutes away. The ambulance driver wanted the doctor to ride along because it was outside protocal. The doctor couldn’t leave his other patients in the office, so we went to the local ER, where they arranged another ambulance transport to Loyola.

I’m not sure if those 4 or 5 hours that we wasted in transit would have, could have  made a difference. The doctors at Loyola really had no idea anyway. Infection, meningitis in particular, was their first reaction. By Day 5, they had brought in genetic doctors and had some idea that maybe this was genetic in nature, specifically a urea cycle disorder, although they weren’t sure which one.

While they intially thought they could transfer us to Children’s Hospital in downtown Chicago. There’s a special type of hemodialysis that removes ammonia from the blood and only Children’s had the know-how to do it. They refused to take him – he’d been in a coma too long, they said – they didn’t think he would recover any brain function regardless of what they attempted.

So that evening they snuggled him in my arms, unplugged him from the ventilator and let me hold my quiet boy as he floated away….

*sigh*

It’s taken me 9 years to be able to write this. Well actually, 9 years and the last 6 hours that’s it taken me to get through the actual typing….damn keyboard keeps getting wet….can’t see what I’m typing……nurse keeps looking at me funny…too polite to comment on my smudgy glasses and tear stained face……

*sigh*

Nathaniel left us with quite a legacy. Jonathan, Zachary and David were all born with Citrullinemia.

All 3 have received liver transplants to “cure” them.

I told you I couldn’t pretend my life was normal…..

 

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23 Comments

23 thoughts on “Introductions….

  1. Pingback: I’ll Take Scars Over The Living Dead Anyday « Witty Little Secret

  2. Oh my, what an incredible story you share with us. And I can tell how difficult it was for you to share it. I hope the sharing of it helps you, in some small way. You should know though… this post is an amazing tribute to your beautiful little angel boy Nathaniel. And to all your children.

    xx Jazzy (visiting from Jen’s Blog Gems)

  3. I’m so glad I came across your blog. I would say I can’t imagine what you went through in losing Nathaniel but I can. I lost my daughter as an infant as well, she was 3 days old. I am so sorry for the loss of your son and for all that your family has been through. Glad to have found you through the blog hop.

  4. I can’t comment, I don’t know what to say. Mostly I think because I found out last week that my sisters baby will not live and I am finding it hard going. I can’t imagine it ever gets easier. Big hugs to you. Jen

  5. Found you on Love with Katie’s More love Monday, and now that you have me in tears I must read more and follow you.

  6. I have to follow you and know how things go. And so I can pray.

  7. Margie

    Well yes, now I am crying. 13 years ago, I held my son in my arms as he died at 24 days old. He died due to being a micropreemie which was due to my ruptured appendix being misdiagnosed for four days. Anywho, I am simply touched by your writing and look forward to all of your boys being healthy and happy.

  8. Hi! I came over from Twitter and please pass the kleenex. Bless your heart. I’ve had 5 miscarriages and as heart breaking as they were I can’t imagine what you’ve gone through. I’m truly sorry for your loss and what your other children have had to endure.

    That being said, I have 5 kids and your dreamworld sounds very similar to mine. The reality world too.

    Nice to meet you.

  9. Hi, I feel honoured to read what you have shared of your story. I am very sorry for your loss and wow, what an amazing family to have endured this and then nurse three little brothers with the same condition! I’m no stranger to loss either – we have just one child (a daughter) at home with us after 11 miscarriages and the death of our much longed-for firstborn girl in 2004. We had her with us for just 31 days, she caught an infection in the hospital when she was born prem. I’ve written a book! How could I not.

    Keep writing. I look forward to getting to know you through your blog.

    Kirrily

  10. You’re right about the Kleenex. Glad I grabbed one.

    Peace to you and all you children, here and beyond.

  11. Hi! I’m following back. I am praying for your family and hope you have a wonderful Christmas! God bless!

  12. Andi

    I just blog hopped to your site. I’m praying for you and your family and I pray that everything goes good for all! Hugs to you all!

  13. It took great courage to share this with women everywhere in blogland…thank you. May the Lord continue to bless you and your family with peace and encouragement.

  14. Amanda Leon

    I’m not really sure how I came across your blog but thank you for sharing your story. I am crying too as I read your words, I just lost my baby boy, Anders, to OTC (a different urea cycle disorder) on 11/20/10, he was 18 days old. It’s all too familiar and extremely sad to say the least. I am sorry for your loss 10 years ago but it is encouraging to know you made it through. I am glad that your boys born with Citrullinemia have had successful liver transplants. I hope David conquers his battle! XOXO

  15. I’m so sorry for your loss and I commend you on your strength. I look forward to reading more of your story. Wishing you all the best in the new year.

  16. I came across your blog from http://www.uppercasewoman.com. WOW! That is some story. You have amazing courage to share this story! Thank you for sharing. May your family continue to have great strength and perserverance.

  17. I’m not typically a crier but that has me with tears dripping down my cheeks. as a mom of three boys (10, 6, 3) I cannot imagine what you’ve been through. wow.

  18. Thank you for writing such a beautiful blog and sharing your story with us. I am so sorry for your loss of Nathaniel and Capt. Snuggles. You are in my thoughts and prayers.

  19. Ahh that definitely made me cry, I don’t know how you could have typed that!
    I think it’s so wonderful that you are so strong.
    Sending good vibes your way. ❤

  20. *sigh* Oh momma.

    Sadly, I can relate.

    Big, big, big hugs.

  21. okay, I do not remember how I found you…think it was through Love with Katies blog or was it see Katie sew…hmmm, anyway this is an amazing story. I am so sorry for all that your little family has endured. I should have grabbed that Kleenex…sigh. You are an inspiration to us all.
    love and hugs,
    melody-mae.blogspot.com

  22. jewelry4change

    I’m here through the Wednesday Window. Thank you for sharing your story. This will bring comfort to others who are going through difficult times. Bless you,
    Jan

  23. What a heartbreaking experience! I can’t imagine how it felt to hold your little Nathaniel for only those few short hours and then say good-bye. And yet there must be joy in knowing Jonathan, Zachary and David’s lives were saved. I’m sure you treasure each day with your boys (I know Jacob’s in there, too) no matter what’s going on. I can tell you adore them! And I hope they bring comfort to that little corner of your heart where Nathaniel lives. I’m visiting from Wednesday Window. Blessings!

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