Sunday, February 26, 2012

Well, we just did not see that one coming. Day 2 of 7. The gift of Zoey's Grace.

That first weeks after Zoey's birth were like something out of a movie.  And not a very good one at that. There were moments where I literally found myself uttering from time to time, " This cannot be happening. It just cannot be happening."

 The hospital where Zoey was born was 45 miles away from the hospital where she was transferred, on the evening of her birth, and I had had a c-section. My 6th.  As much as I wanted to rush down and be with her, I knew I needed to take a few days to recoup a little strength before hitting whatever it was that lie before us. So I took the days. 4 in fact. So unlike me. I often wonder, looking back, whether I was in a denial mode of operation. Afraid to face the unavoidable. The reality of the life and possibly the dying, of ones child. Mark stood vigil over our little love and did it with such strength despite his own fear. Just look at the pictures from the post before this. He adored her and cared for her in ways that unrivaled anything I had ever seen. I meanwhile, was being taken care of by friends and family who loved me and who had no idea what to say or do for me. So they brought me Jamba Juice and Coffee Bean and chocolate and new Pajamas. They sat and listened as I unreasonably blamed myself and my 'advanced maternal age' for all that Zoey was enduring. They sat in my room, with pained looks on their faces, as I pumped my non existent, as of yet, milk for a baby that I had no idea if she would ever reap the rewards of that liquid gold. The nurses were amazing. They were attentive and caring. They gave me much needed sedatives to try and abate the ever present feeling of guilt and foreboding. But medication could not deaden my hearing, as I could still hear the other babies on the floor, crying, as they were being wheeled to their waiting mommies. I called mark almost hourly for updates and listened as everyday, there was something new being added to Zoey's already mounting list of diagnoses. I sat there on my bed, wondering how the hell we had gotten here.

We did very little reading  or preparing about having a child with Down syndrome before Zoey was born. We didn't feel it was necessary. The extra chromosome was a non-issue. Truly it was. If you ask our oldest, Jessica, she will tell you, she always knew that we would have a child like Zoey in our lives. And the truth be told, so did I. Our reading and educating was mainly pertaining to her heart repair, but along the way I did happen to read that people with Down syndrome had a higher risk of developing leukemia. Not once did I come across the fact that they could be born with a rare form of leukemia, but boy did we find out the hard way, that 10% do in fact come into this world with a condition called TMD. A transient form of leukemia and a form that required Zoey to have a double body exchange, at 12 hours of age. Double body exchange you say? That would be a procedure where a doctor and a nurse, stand on either side of your child, for hours on end, and 10 cc's at a time, withdraw and then replace ALL  the blood in your baby's body. And then, they do it again. Fun times uh? So, you would think that the Down syndrome and the major heart defect and the rare form of leukemia would be enough for one wee body, wouldn't you? You would think. But you would be wrong. We were SO not done yet. The next thing, wasn't even on my radar. Not even close.


Middle Cerebral Artery Infarct. In layman's terms: A stroke. Yep, my newborn, precious and already unfairly assaulted child of mine, had a stroke. And she did not just have a stroke. She had a huge stroke. One that most likely would have brought you or I so far down and most likely, we would not be getting back up. A routine intake exam of Zoey when she arrived at CHLA  showed a brain density. Further teasing showed an MCA incident. And further testing showed that the clot still was sitting precariously in her right carotid artery. The stroke was said to have happened a few days before birth, inutero. We know that for 2 reasons. One because of brain cell death seen on the MRI and also from an exam at her cardiologists, 4 days before, that told us then that her little brain was perfect. Her doctor always checked all of that at my prenatal visits. I was devastated. I felt such tremendous guilt because 2 days before I went into labor she was acting so strangely in my belly. Flipping and flopping and squirming and telling me, in the only way she could, that she was in trouble. I often wonder, if I had listened to my instincts that Wednesday, would it have made any difference? Any difference at all.

I went looking for the CD of Zoey's MRI this morning. It is somewhere. Tucked away. And my organized self could not find it. Probably better that way. That image, my husband will tell you, is one of the most difficult things he has seen  to date. Seeing that image for the first time, Mark will say, almost brought him to his knees. He will tell you that he looked at the MRI and honestly thought,"she will never 'DO' anything. To this day, talking about that sit down with the doctors in that conference room, viewing those images, to this day, he still tears up.


But then all he has to do is glance at Zoey, in these moments and the pain dissipates and fades away. He sees the magic in what she CAN  do. Despite the insurmountable. He sees the indomitable will to survive and we see, as a family, that test and numbers and stats and prognosis, mean nothing when you are dealing with a force greater then all that. When you are dealing with a life meant to be here. A life who chose fight over flight. A life, viewed by many as damaged goods. A life who said in the darkest of times, follow me, in my silence and fragility, and I will show you the way.

Zoey will do 'four' when you ask her how old she is. Not bad. Not bad my miracle girl. Who would have thought?


Melani said...

Oh my! What a truly amazing thing you have been thru. I have said in past comments and I will continue to say it: you are an inspiration to us all and Zoey Grace is amazing! God bless!

Kristin said...

Loving your story. Beautiful!

Rochelle said...

A sobbing mess right now! Beautiful posts, sorry I had to catch up on yesterdays too!
Looking forward to the rest of the week and the amazing celebration of Princess Zoey!

Reagan Leigh said...

Amazing. I knew all of Zoey's diagnoses, I just never knew you got so many of them back to back to back! To see all that you went through and all your girl went through and then to see where you both are today...amazing!

Bea, OT said...

She is an amazing little girl!

My little guy has a middle cerebral artery infarct too. One of the major arteries to the brain...1 of 3. I had a hard time looking at that MRI. I'm glad I didn't see it till 2 months later.

My heart swells with hope, seeing how wonderful Zoey is doing! I hope that my baby follows her example!

Elizabeth said...

I'll never forget the image you've painted here of you sitting on your hospital bed with your coffees and your well-meaning friends while your little girl is 45 minutes away getting all these diagnoses. Brutal.

Peter Olson said...


Carolyn said...

I am loving reading Zoey's birth story. What a fighter! Both of you!

Anonymous said...

Heather, it is so wonderful of you to do this very heart tucking journal leading up to Zoey Grace's 5th birthday. For those of us who knew so much of this, it just reinforces all the scary events of her arrival and short time after Thank you from the bottom of my heart.

And to you Mark, everyone who knows me (family & friends) knows that I have only special loving thoughts of you, (from baby to adult to husband, father) Now the whole blog land family knows how truly strong and loving you are. Holding vigil over your infant daughter, having a wife miles away in a hospital and then of couse those 5 other Needhams on the homefront. Wow You rock nephew, you surely rock!

Aunt Bluebelle

blogzilly said...

It is amazing what the human brain is capable of, even after such an incredible trauma. Inexplicable really.

What caused the color of Zoey's skin to be such a different color in some of these early photos of her? Or is my monitor still very fried? I went back and re-read to see if I missed something about what happened but could not find a causality.

Penny said...

Thank you Heather.......... thanks once again for allowing us all inside for a closer peek at your precious girl.... For me it's so bittersweet. I love to see new posts and the new adventures Zoey is taking you all on!

You Go Zoey!! Show them how it's done!!!!

Penny said...

Thank you Heather for continuing to allow us a peek into Zoey's incredible story. For me these little moments are little tiny bits of gold.... so bittersweet.
I adore watching her break down barriers and show the world just what she's made of..... I think she's a lot like her Mommy!

Thank you!

stephanie said...

Just in case i just cannot come up with the words to leave a decent comment, I want you to know I'm reading every single word and crying... of course.

Cammie Heflin said...

:) Even though this story is full of so much sad and scary things I smile as I read it because I am honored to know Miss Zoey Grace and the amazing girl she is!!!

Scrappy quilter said...

I love the words "we see what she CAN do". So very profound. What an incredible gift she is. Hugs

Melissa said...

I finally have the time to spend with Zoey's story before I met you. I love every minute of getting to know Zoey better.