Saturday, February 25, 2012

The gift of Zoey's Grace. Day 1 of 7 postings leading up to the Big 5!

Zoey in Greek, means : LIFE, and we think that Zoey has personified that name, in ways we could never, ever have imagined.

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At 22 weeks in my pregnancy, Zoey's heart defect was detected. And in true Zoey fashion, it was not just a 'hole' in her heart, it was a large, and her case, a larger than normal, defect, called Atrioventricular Septal Defect. It is known as the 'washing machine' defect. Four chambers are present but not separated because the middle  of the heart, the septum wall, did not form and therefore the Mitral valve and Tricuspid did not either. To be corrected, you have got to have enough of what should be the wall, on the top and bottom, to connect with, hopefully her own donor tissue. And the valves would have to be built. Also hopefully with her own present and healthy tissue. We found out that she had the top and bottom, but the distance between was iffy but doable. So from that moment on, from that diagnosis, the only thing that mattered and the only thing we focused on was getting her into this world and fixing it.

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But with that diagnosis, there was an undeniable truth and that was, she most likely would be born with Down syndrome. That diagnosis, AV Canal Complete, usually across the board, was found only in the Down syndrome population. I was asked at that appointment , if I wanted an Amniocentesis right then, to which I said no, immediately and without question. I did not want to be, or rather I did not want my child to be, that 1 out of 200 to 400, that are miscarried. The next thing that was told to me was that if I did in fact have any misgivings about continuing the pregnancy, I needed to decide in the next 2 weeks. Right before my 24 week mark. In one split second, I replied that I had not one misgiving and this pregnancy was going to continue. Zoey and God would dictate the end result. Not me. The doctor then asked me if I was a person of faith, I said I was, to which she said, that often makes the decision easier. That is not to say that others of faith, don't question the course to be taken, but for me and my family, nope, not our choice.

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This picture was the first picture taken of her immediately after birth. It was taken by the hospital and I think it was actually taken by our friend from church, who is a NICU nurse. Patricia gave me my greatest gift that day, one I did not realize in that moment and would not realize, for a long time to come.  Zoey was diagnosed with a form of leukemia at birth and her body was in dire distress due to the unhealthy blood circulating around in her little body and her imperfect heart. So right before Zoey was life flighted to CHLA, Patricia broke the rules and wheeled Zoey down to me. Patricia knew something I did not that day. Knowledge coming from years of experience of seeing very sick babies come into this world and what that gift was: seeing my baby, stroking her face, studying her swollen and edemic features, kissing her red and blotchy precious face, because Patricia knew I quite possibly might never get to hold my baby alive and breathing, in my arms again. I will never, forget that moment and that gesture and the risk she took, to allow me literally a few minutes with my sweet girl.

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Zoey's middle name is Grace. And can I just tell you, this child of mine, flows through this life, with more grace, then I could hope to ever possess. Her beauty and forgiveness in the face of the unfair, has taught me lessons in this life, beyond what I could articulate or convey in words. There was beauty and grace dwelling alongside heartache and despair in those early days, and all the beauty and grace was emanating from a teeny-tiny little broken body. And my heart, was only filled with such sadness and fear and despair, that I could not imagine how it was I was going to turn myself around, lift myself from the shower floor that I found myself laying upon on numerous occasions, and care for this fragile and innocent child of mine or any of my other 5 children. Little did I know, this gift, who came blazing into all our lives on that Friday morning in March, five years ago, would be the one to show us the way.

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This picture is hard to look at, isn't it? Not beautiful to many of you, but for me, this picture means everything to me. This picture was taken the day I was able to hold my daughter for the very first time since she was air-lifted from our local hospital. After days of standing vigil over her isolette, our nurse, who would go on to be one of Zoey's primary nurses for our almost 3 month stay, asked me if I wanted to hold her. I think my exact words were, "Can I?" Well, let me tell you, the idea of holding a baby sounds simple enough, right? In the case of a sick ventilated baby, not so much. It took a room full of people to make that moment happen and for them and their love and care of my child, I will forever be grateful.

Day 2 on the journey to the big 5, tomorrow ...

24 comments:

Cammie Heflin said...

Naturally, this is a beautiful post :) I wish I would have known my Addy during her 5 month NICU stay, feel like I missed so much! Can't wait to see the Big 5 bday pix!

Elizabeth said...

What an amazing and wonderful story. I can't wait to hear the rest of them -- and can't believe your little Zoey Grace is going to be five years old!

Devon said...

SWEET GIRL.

I SO know what you mean about holding the babies...they wouldn't let me hold Dakin for like a week and a half after traching. I HATED it.

I love these pics!

pressuresupport.com said...

Well, thanks for warning me that I'll probably cry at least once a day for the next 7 days.

Beautiful. The story, the photos (yes, even the last one) Just beautiful.

Helena Sue said...

Goosebumps from this poignant post! And yes- I do think Zoey's baby picture is beautiful. :)

Googsmom said...

I'm bawling..... I love you, Zoey!

Bea, OT said...

Tears welled up in my eyes as I remembered my days in NICU. I also remember the first time I got to hold my little darling as I tried not to cry. He didn't have a ventilator, but he had a million wires attached to his head. The nurse kindly pushed the other wires out of the way as I stared at my darling.

I appreciate the picture and think how beautiful she looks...despite the wires because she has a beautiful soul.

Thanks for sharing this story.

Reagan Leigh said...

What a great idea to do these posts! Love it. Love you.

stephanie said...

Sobbing like this is all happening right now!

I know there's a happy ending! ;)

I'll bring my tissues for the next post!

Becca said...

Beautiful, Heather, and I'm again crying into my cereal. What a gift your friend gave to you, to have brought Zoey in before she was flown to the other hospital! Your girl is an amazing gift.

Angi said...

Beautifully written, amazing how much a nurse can impact a life :-)

Sandryte said...

Ah, couldn't stop crying.. Very emotional post. Your daughter is a beauty from the very beginning. I just want to reach out and hug her in all those photos.

Anonymous said...

It's little hard to see the keys with these tears in my eyes. Yes, when Zoey was born, the decision to airlift her to CHLA, you were not released from hospital and Mark went with his littlest sweetheart.(AWESOME photos of daddy with his little one) Talk about stress! Makes my stomach churn to think of those first few hours/days!

But....here you are little grand neice about to celebrate your 5th birthday and I thank God for that!

Love & hugs to everyone

Aunt Bluebelle

Birdie said...

I completely disagree. Her picture is easy to look at. She is beautiful.

Justine said...

What a beautiful, scary, and amazing story. Zoey Grace...I love that name and it so fits her.

The Annessa Family said...

Oh I am in TEARS! Being in the NICU right now surrounded by so many little warriors...God is always in those details and I am so blessed by how you share Zoey with us.

Brooke
www.MarvelousLoveBlog.com

Lisa Lilienthal said...

Oh, so amazing. i started reading this in the car last night, on the way to the Ds Red Carpet Ball, and I had to stop because I didn't want to arrive there in a puddle! I can't wait for the rest of your post. She is divine, and so are you.

Lacey said...

Sweet Zoey! I remember the days when you couldn't hold your baby. So hard! We also were so grateful for a nurse that understood how important that was, and wasn't afraid of the big, bad tube!

Jeana said...

So beautiful. I look forward to hearing the rest. Its funny because when I looked at the last picture I saw cute little Zoey peeking out from all that stuff on her face. Before Kaelyn I would have seen all the tubes and tape and yes, it would have been a hard picture to look at. But now I just see a little miracle just waiting to change the world. Love you Zoey!

Erin Beaudette said...

What a beautiful, amazing name for a beautiful, amazing young lady. I am eagerly anticipating tomorrow's post and the continuation of Zoey's story. Thank you for sharing!!

krlr said...

Oh what a flashback - my daughter also had an AVSD (though thankfully no leukemia). They tell you it can be fixed but it astounds me to this day what that entailed and how fortunate we are they were born in a decade in which it had become possible. I have no church yet nonetheless... by the Grace of God [our girls share a name too] ... and, of course, modern medicine and Gortex.

SECRET PEPPER PERSON: said...

Wonderful!

blogzilly said...

There is a piece of music I wish I could figure out how to share with you, but it happened to be playing when I was reading this and it was very appropriate.

Very moving post...I can imagine it is a difficult journey to summarize in words, but you have an amazing beginning...

Scrappy quilter said...

Just starting to catch up. Beautiful at birth just like she is today. Our (whoops) your Zoey girl...God's gift to you and us. Love ya