Tuesday, August 12, 2008

A Gift Beyond Words

August 13, 2007 is often referred to around here as Zoey's "second birthday". Sounds funny to some, I know. But for all of us who saw the absolute miracle performed that day, there really isn't any other name for it. That day, one year ago, Zoey had her AV canal heart repair. A perfect repair. It was a day unmatched by many others previous. There were moments when we wondered if in fact it would ever come. When Zoey's heart defect was first diagnosed at 20 weeks in my pregnancy, we were assured that it was manageable. Serious for sure but totally manageable. Little did we know that Zoey would come into this world hit hard in so many other areas, that the once manageable condition became anything but. She was immediately born into the category of congestive heart failure. Trust me, that is just not the term, you as a parent, want to hear about your hours old newborn. That and leukemia and stroke. But there we were, facing the unimaginable. We faced it together. All of us who loved Zoey. And there are a lot of people who love Zoey. That child was also born a fighter. That is another thing Zoey was born with. A undeniable fighting spirit. That girl fought from the get go. The 10 weeks in the hospital were the easy weeks in the beginning, believe it or not. Once she came home well, that was when things got kicked up a notch. Every single thing our family did or didn't do, revolved around Zoey. Mostly keeping her healthy and alive. Germ free zone for 3 1/2 months and that was a difficult feat with a family our size but we did it. I was and am, so proud of my family and the way they all so gracefully, unselfishly lived their lives during those difficult months. Finally, when pulmonary hypertension dictated it was time for surgery we all regrouped and banned together once again and got done what needed to be done. Especially Miss Zoey. I was asked by a few people that August day, if I cried when they wheeled her into surgery. The answer, no. I was just so absolutely relieved that we had gotten her to this day. That she had gotten to this day. It was not elective surgery. No choice. Zoey needed that surgery, right then, to live. We actually would not know how badly surgery was needed until after, when she began to recover. One of the first things that you noticed, when her little eyes finally opened, was the brightness. Before surgery, they were really a non describe color. After, they had color. They had life in them. Her actual skin color was the other thing. Pink. I finally had a pink little baby girl. When time came to extubate, that was when we noticed the next remarkable change. Zoey did have difficulty after extubation with upper airway restriction. As we teetered on the edge of having to reintubate, the Respitory Therapist and everyone were gathered around working on her. They had her propped up thumping her back and she was crying. I stood at the end of her bed watching and the Doctor asked me if that was her normal cry. My response, I have no idea because she had never cried in all of her 5 1/2 months of life. Zoey was so very depleted in so many areas that she reserved every ounce of energy and she never, ever cried. Ever. Once we got past that scary hour or so Zoey began her fight back. She was amazing. She showed us how much courage could be found in a small 12 pound little body. On about day four of recovery Zoey gave us her biggest gift yet. That gift was one I had been waiting for. That gift was something I had seen time and again, gracing the faces of so many other children with Down syndrome. That gift was a smile. We had never, ever seen Zoey smile except in her sleep. I yearned to see her smile and then all of the sudden it was there. It was as if she was saying,"Thanks, I feel so much better." She smiled at anyone and everyone. Her smile lit up a room. Her smile is contagious to this day and except for the time when Infantile Spasms invaded her life, her smile has been a constant. God has blessed us in ways too numerous to count and in ways that allow us to be humbled, hopeful and forever grateful that He carried us in our moments of weakness and strengthened us in times of trials and I have got to believe, rejoiced right along side us as Zoey overcame each and every obstacle set before her. Happy "second birthday" Zoey Grace, your strength, resiliency and determination continue to inspire us each and everyday.

*Zoey 6 days post op waiting to come home, Zoey's first bath at home after surgery and finally, today at the beach, all my little darlings!


Kelly said...

I am so happy for you guys. Zoey is such a miracle!!

Kele said...

Gosh Heather, your posts are like free therapy for me! LOL
So much of what you say is like my Presley. I have constantly commented on how her eyes don't really have a color. That is so wierd to read that about Zoey. My Pres' eyes just seem murky. And I have only seen her smile in her sleep. I think I might have an absolute meltdown when she does smile, REALLY smile. I have never wanted anything so much. Perhaps after Monday, after her heart is repaired, our family can also experience all of these wonderful things. A pink, smiling, happy Pres!
I am so very proud of Lil Zoey and I can't think of anyone who deserves TWO birthdays every year!! Presley will have THREE in this house, DOB, Heart repair and HOMECOMING!!
Dear Zoey,
Happy Birthday2 !! You are an amazing little wonder. You are blessed to have the family you do and they are blessed to have you. Enjoy your day today, I hope you guys make it extra special and know we are thinking of you and loving you here in Texas!

Mia hat eins mehr said...

I like the new style of your website, Heather! And of course the photos. I have to say I am a little jealous when I see the pic from the beach ;-)

Anyways, heart surgery. Isn`t it amazing what they can do nowadays? They repair the heart of a small small baby and then you go back home after a couple of days. Miracle. Lots of love and hugs for today from me to Zoey and you!

Michelle P. said...

Happy Birthday to my sweet Zoey. I love you so much and I am grateful today, August 13th, for you because you have been such a gift in my own life, not to mention countless others,especially your family who loves you so so much. Thank you Zoey for all your smiles, hugs, kisses and cuddles over the last year. I have enjoyed you so, and YOU Zoey Grace make my life better.
Happy Birthday Miracle Girl!!
I love you,
your godmother Michelle

Anonymous said...

Happy Heart Day... boy I need to catch up with you guys. We have been on vacation and I need to read up on Miss Zoey! Big hugs to you.

ugghhh ... blogger won't let me sign in that is why today I am anonymous...LOL

Kristy C said...

Heather..the children are absolutely gorgeous!! Taylor is so tall now! A very Happy Heart Birthday to your dear Zoey!

Forever Greatful to be a Wife and Mommie said...

Beautifully put -- she is a special little girl.

Aunt Kim said...

Heather, this is Kele's sister Kim. I enjoy all your postings but I loved this blog posting. I know with everything in me that about a year from now Kele will be writing something similar about Presley. I have already read this posting a few times today because as you know, this is a scary time for Presley's family but your words bring so much comfort and hope. I can't even imagine what it does for Kele. One day I will meet you and give you the biggest hug but for now, thank you from the bottom of my heart for being there, so steadfast and strong, for my sister.

And a belated happy, happy "2nd Birthday" to your precious angel, Zoey.