We Celebrated!

Dear friends and family,

Gosh, we don't even know how to begin this message to you.

Our gratitude runs so deep and so far that to put it in an email is embarrassing. To say we were "overwhelmed at the outpouring of support" for Zachary's celebration would be a gross understatement. In addition to all of you who joined us, there were just as many who called or wrote to us to say, "I can't be there, but I'll be in white, barefoot." Cool.

The celebration itself was remarkable. Last minute weather took us all to our church home, where innumerable helpful hands poured out from seemingly nowhere to help us set up. (This was yet another example of how our Community Presbyterian Church family has surrounded us with love and generous support.) Friends and family from every facet of our lives came to join us. I distinctly remember every single hug from every single one of you.

Marcy and Gregory, our friends from church, performed "Praise You in the Storm", a song by the Christian group, Casting Crowns. (We'll include the lyrics as a separate post on the blog for you to see.) They seem to be written for us and our hope is that you can identify with them too. If you didn't get to hear Marcy's booming voice sing them, I highly recommend you download the song onto your iPod. You won't be sorry. Thank you, Kara, for insisting I hear this amazing song. I hear it in my sleep.

Speaking of songs, one of our favorite moments from the celebration was the balloon release. I don't think either one of us was prepared for how touching that would be. The sky was grey from the day's rain. In the background was Isaiah Kamakawiwo'ole's rendition of "Somewhere Over the Rainbow". Recommended by Nancy, it was a perfectly whimsical version for the perfect little life of Zachary. After a beautiful introduction from Nancy (Genesis 9:12-17) and each person released a balloon, the sky was suddenly full of color. Purple, blue, red, green, and yellow ovals that quickly became dots. No one moved yet everyone marveled at the sky. When I finally took my eyes to the sky, I wept. For the first time, I felt Zachary "up there" and as the balloons floated higher and higher, Zachary felt further and further away. Yet, I could almost picture him gathering them, one by one, reading the adorable notes that were attached, as they reached Heaven. I felt the kind of glee a mother feels when her child grabs a balloon. It was the perfect way to send him off. And yes, there was a beautiful rainbow in the sky only moments after the balloons had been released. Zachary called the shots that day - he was there, somewhere, over the rainbow.

We are so honored that you came and more so, that you've shared with us your intimate and very personal stories of how our baby has touched your lives so profoundly. So many of you have shared that your walk with Christ is different now. WOW! Isn't it amazing how God is doing His work on us? He brought Zach to us and therefore brought us together - as friends, as a community, and as people to rejoice and to grieve. And He's bringing us closer to Him through all of it.

He's also brought us together to give. Your contributions to the "Little Z" Foundation have been remarkable! We thank you, so much, for entrusting us with your money to do something SO GOOD with it! We promise you (in the name of Zachary) that we will and we can't wait to share more about lives we get to touch because of your willingness to contribute. To date, we've received an amazing $1850! God is so good.

You've asked how we are...we're, well, sad. We miss Zachary so much. My friend Michelle told me of a dream she had the day after Zachary passed. Ready? She dreamed that Jesus was holding Zachary, bouncing him on his knee. I'm not sure if the image in my mind matches her dream, but I can almost hear him giggling. Can't you? So while we struggle to get through the tough stuff, we feel peace when our minds travel from the things we don't get to experience with him to the eventual time (eternity) that we will get with him. It's a process and we know we've got to take the ride.

You've also asked what you can do...please continue to pray, to call, to come by, to send messages. They heal us. They remind us that you are there. They make it ok to cry when we see you or talk to you.

Many of you have requested "our lessons from Zach" that we shared at the service. We'll be sure to include that in our next update to you. As you can imagine, the lessons just keep coming.

With so much love,

Kristen, Jimmy, Carter, Addison, and ZACHARY

A Celebration of the life of Zachary James Tate

Dear amazing friends and family,

We would be honored if you would join us in celebrating the beautiful life of our son, Zachary James Tate. Just as you have expressed how touched you have been by his short stay on Earth, we've been equally as touched by your willingness to come along on our journey.


A Celebration of Life!
Honoring Zachary James Tate
Saturday, June 21st
6:30pm - 7:45pm
Longmeadow Park -- Celebration, Florida


Additional information:
- We welcome all who would like to be a part of this celebration!
- Dress is casual...wear as much white as your closet allows and in true Zach form, shoes are optional. :)
- Fabulous childcare providers will be on hand to help with little ones and play at the park.
- In the event it is raining: Drive by the park first...if a bunch of people in white aren't there, go to Community Presbyterian Church! (Zach came and left this Earth with a bit of rain, so the chances are good we'll see a few drops!)
- In lieu of flowers, we would be honored to accept donations to The Little Z Foundation. While we are still formalizing our mission, our early thinking includes:
* supporting, assisting and comforting sick children and their families in need.
* recognizing outstanding medical service.
* Christian support, services and education.

Directions to Longmeadow Park from 192:
- From 192, take Celebration Avenue to Downtown Celebration. (Note Community Presbyterian Church on your right at Celebration Avenue & Sycamore.)
- Turn right on Water Street.
- Take first Left onto Mulberry Avenue - cross over bridge.
- Turn Right on Longmeadow Street.

We look forward to celebrating with you!

Jimmy, Kristen, Carter and Addison

Our 12 Days in June...

Dear friends and family,

Zachary James Tate's new life began last night. At approximately 6:40pm, 12-day old Zach went to be with our Lord.

It was the perfect worst experience of our lives.

Our day began with a sermon (delivered by our adorable Youth Minister, Shaun Hartsell) so fitting, it seemed to be tailor made for Jimmy and I.

Zach's day was spent in the arms of family. Jimmy's mom, "Bebe", spent most of the morning holding him, singing to him, and reading to him. He was peaceful and content. Carter, Jimmy, my mom (Paula), and I came to the hospital for the second shift of holding, cuddling, and singing. We even got to give him a bath!

On the way home from the hospital, we received a call that we should return. Zachary was fighting for his little life. It was as though he waited for us to leave to make his own departure. Upon our return, Sarah, our amazing nurse, had him cuddled in her arms and was surrounded by 2 other nurses. We held him in our arms as he took his last breaths.

It was unbelievably peaceful. No pain, no suffering, only God's will - just as we have been praying for.

We had 12 delightful days with Zach. He hung on for Father's Day...and split the day with Jimmy and our ultimate Father.

It rained last night for a bit, followed by the most glorious sunset. I swear I saw the letter "Z" in the clouds.

We'll update you soon with our plans for a celebration of Little Z's life! Think balloons, champagne, and bare feet...Additionally, we are setting up a foundation in honor of Zachary.

With love and unfathomable gratitude,

Kristen, Jimmy, Carter, Addison, and Zachary

Click on the link below to listen to Shaun’s sermon from yesterday speaking of the ultimate sacrifice: A father putting his faith in God above all else (Genesis 22: 1-13)

http://www.commpres.org/Portals/0/Media/20080615C.mp3 (It will take a minute to load, but it’s worth it. Make sure your volume is on, because it just starts playing.)

To Have and To Hold...

Little Z getting preped for extubation...














Kristen holding Zachary after extubation...

Daddy holding Little Z...

Carter and Addison sharing ice cream... :)

Hello, family and dear, dear friends,

I just had the joy of reviewing the pictures Jimmy took of our most unpredictable day at the hospital.

Zach was extubated today and I’m exhilarated to report that he is officially breathing without a ventilator. As you know, this is a significant milestone. While his prognosis has not changed, God has granted us more time to have and to hold our baby boy.

It was such an event wrapped in a non-event package. The nurses came in, told us his numbers looked great, and asked if we were ready to go. It’s such an odd circumstance…a seemingly benign act (removing a small tube) with such paramount implications (will he breathe?)…

When they first took it out, it appeared he was going to do fine and there was an air of “see, I told you it would be ok” in the room. But then it wasn’t ok. In fact, it wasn’t ok for about 4 minutes. Four minutes of every imaginable emotion a mother and father can feel watching and waiting to see if their son would take another breath. I recall conversing with God at one point: “Are you here? Are you here to take him? I’m not ready. But I want what is in your will, Dear Lord. I want what is in your will.”

Zach breathed. His heart rate and his pulse slowly returned to normal. We could see his chest going in and out and his little heart beating. And then “the event” was over and they placed a CPAP on him (a device that provides continuous pressure to his lungs – often used for people with sleep apnea) to give him a little something extra after having been ventilated for so long. Our hope for tomorrow is that his numbers continue to stabilize and that we can simply place him on a nasal cannula (much less invasive) that will allow him comfortable self-breathing.

Ultimately, our hope is that we will be able to bring Zachary home to rest comfortably here. A series of miracles like today’s will need to happen in order to him to leave the hospital. How long he will be on this Earth is still unknown and no one will speculate. What we do know for sure is that Zachary is a fighter, your prayers are lifting each of us, and his purpose is continuing to make itself known. How loved we feel, how supported we are, and mostly, how blessed we are to have him in our lives. As Nancy Graham Ogne says, “GO GOD”!

We celebrated tonight with our moms and Carter and Addison on the front porch with ice cream cones. It was perfect and much-needed “normal” in this not-at-all-normal time. We hope you enjoy the pictures.

With gratitude,

Kristen and Jimmy

Day 10 - June 12, 2008

Nancy loving on and blessing Z...

The Swatek's Visiting...

Tony holding Little Z...

Julie holding Zachary...

Just Breathe...

Ahhh, it's finally quiet.

I am in the solitude of my bedroom, listening to our mothers give yet one more hour of service to my family by cleaning the kitchen after a lovely meal delivered by the Lowell family.

The sense of gratitude that Jimmy and I feel is crazy. It's the kind that makes you smile, shake your head, and wonder, "why are people being so unbelievably gracious to us?" Thank you for your continued calls, e-mails, cards, drop-bys, text messages, hospital visits, meals, flowers, and on and on and on. Most of all, thank you for your prayers. We are in awe of how our loved ones have rallied to lift us up and hold us close. We feel it. We feel as though we are resting on a cloud and each of your hands has joined the Lord's in keeping us afloat. We are full.

Our goal was to get our blog (www.zacharyjamestate.blogspot.com) out to you to be able to give you continual updates. You are so deserving of knowing what is going on. In fact, we have sort of a day-by-day synopsis of our last 8 days to share with you at some point, but we haven't had the time to make it what we want. It is up with some pictures and we'll continue to update it. For now, I want to share with you where we are today and what tomorrow could bring.

Zachary (he's so totally cute) had a minor surgery last Friday that required him to go on a ventilator. The doctors wanted him to sail through the surgery without worrying about him breathing on his own. The intubation was very difficult. It took the anesthesiologist quite sometime to get the breathing tube in because of his anatomy, which is far more anterior than a "normal" patient.

When they went to remove the tube on Saturday, Zach had a hard time breathing on his own. After repeated attempts to get him to take his own breaths, they attempted to re-intubate him. Again, it was met with extreme difficulty, but they were finally successful in getting the tube back in him to assist him with his breathing. However, after experiencing 2 difficult intubations in less than 24 hours, the doctors believe he experienced a lot of swelling in his throat. So they started him on a steroid to reduce the swelling in hopes of removing the tube again, only this time with the outcome of him breathing on his own.

Tomorrow the doctors will remove his tube. Most signs suggest that he should be able to breathe on his own. However, there is a possibility that he may not...much like he did not on Saturday. Our hope is that the steroid provided the boost he'll need to breathe on his own. In the event he does, the next days will be spent rejoicing and considering our next steps. In the event he does not, we have decided not to interfere with God's plan for Zachary and will let his body take its natural course.

We've spent days thinking through this decision and have been graced by practitioners who share our spirit. They have advised and listened, encouraged and prayed. Zachary's condition is incompatible with life but his spirit is not and will continue to live on with us whether he leaves us now or in a few more precious days, weeks, or months. We know God chose the beginning and the end for Zachary and we have done our best to practice loving free will in-between. Now it is up to Zachary and our God.

As we mentioned when we first talked with you, we know that Zachary was hand-picked by God and sent to us. Our consistent prayer has been for Little Z's purpose to be ever-present. God has answered our prayer over and over again and we've started to document them. Jimmy has personally petitioned for Zach to be our family's guardian angel...no small feat.

We are cautiously hopeful that tomorrow's outcome allows us more time with our precious son. But we are also as prepared as we can be if it goes the other way. Please pray that Zachary feels no pain and only the presence of love.

When we left Zach tonight, we read Philippians 4: 4-7 to him: Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Jimmy and I are full of joy because we got to meet Zachary and that because of him, we are drawn closer to the Lord. See? Z-Man is making his purpose known.

Goodnight, all. Thank you.

Kristen & Jimmy

Day 9 - June 11, 2008

Our wonderful NICU Nurse - Sarah!

Laura visits with the Z-man...

Tracy visits and brings bible versus for us (sorry about the missing head :))

Day 8 - June 10, 2008

Z gets his first bath from Mommy and Daddy

Kangaroo Care - skin to skin

Day 7 - June 9, 2008

Dear friends and family,

Wow! What a surreal experience this has been. We are on Day 7 of this journey and, as you can imagine, it has been a series of ups and downs. God is definitely omnipotent and knowing that has given us this amazing sense of peace through each hill and valley. Additionally, our support system, comprised of each of you, "fills" us. We are functioning on energy that each of you has given to us in the form of calls, e-mail responses, play dates for Carter and Addison, meals that you have brought, visits, hugs, flowers, but mainly, PRAYERS. We have never been more present with the Lord and the sweetness it offers is so hard to describe.

Let me tell you about Zachary.

He's amazing. Each day has offered the spectrum of small glimpses to "burning bush" symbols of his purpose. The first days after his birth included a series of tests and trying to understand exactly what we were facing. He was in a large room at the NICU with all of the other sweet miracles. That was particularly hard. It was a dark room with lots of beeps and alarms and such sensory overload, that it was hard to just hone in on the presence of our baby. On Friday Zachary was moved to his own private room (still in the NICU), but God has provided us the serenity and space of his own palace! We have placed pictures of his brother and sister all over the room in hopes that he feels surrounded by his family.

The team of doctors and nurses caring for Zach has been amazing. Not only are they incredibly technically competent, but the empathy and kindness with which they offer their care has been exactly what we've needed. On Friday he had surgery to repair an umbilical hernia. (A part of his intestine was inside his umbilical cord.) They also removed the sixth digit from each hand since he was already under an anesthetic. The surgery itself went well, but the unfortunate outcome was that he needed to be placed on a ventilator to help him breathe. (Up until then, he was only using a nasal cannula to assist with breathing.) When they tried to remove the ventilator on Saturday, not only did he not breathe well on his own, but the process of trying to get the breathing tube back in was very scary...lots of nurses, doctors, and repertory therapists that huddled around him in a flurry to get it back in. They finally called an anesthesiologist (versed at putting in tubes) to do the trick. He has been able to rest well since the surgery and now the wait and see begins again for when we can remove the ventilator.

Our dear friend and Pastor, Nancy, came with us to the hospital on Friday to pray with us and upon learning his surgery was moved up, she agreed to perform a Baptism on our precious baby. It was very formal...water in a baby bathing tub! But if you know Nancy, you know it was tender, eloquent, and the presence of the Lord was apparent. My mom brought him a beautiful cross from Texas that dangles above his incubator.

Like most newborns, Zach sleeps a lot! But it is so incredibly cool to see him react when we are there. He opens his eyes (they are blue) and closes his eyes to feel the warm stroke of our hands. I liken him to a kitty cat...tightens his eyes when you stroke his forehead. He also follows the sound of our voices when he opens his eyes. I also swear that he smiled once. With all signs of interaction, we tell him thank you! These are his little gifts to us.

Both Carter and Addison have met him. This, I will admit, has probably been the hardest part for me. They have a member of their staff at the NICU that helps and councils siblings. She spent about 20 minutes with Carter before he went in to meet Zachary to talk with him about what he might see and to try and get a gauge for what he might be feeling. They are telling us the most important thing is to be sure that Carter doesn't think that he'll "get" what Zach has or that he, in any way, had something to do with this. At the same time, we must gingerly relay that Zach is sick. Carter often asks if Zach is coming home today. It's a line I almost can't cross for fear I won't be able to get back over. Addison's visit was what you would expect from a 17-month old: tentative, cautious, and more interested in the stuff in the room than the baby. She was very curious about him but did not want to get close. A few times, she did wave at him. She knew he was there.

The geneticist has confirmed that trisomy 13 is his fate. Now, it is really an hour-by-hour and day-by-day journey. Our goal is to spend as much time with him as possible while also trying to maintain some shred of normalcy for the other kids.


Look Mom, I have 6 Toes! :)

More Kangaroo Care from Mommy!

Little Z getting ready for bed

Day 6 - June 8, 2008

Addison meets Z - blows kisses but doesn't want to get to close














Mommy and her little man - Eyes Wide Open!














Mia holding ZJT - his first time in a hat














Katrina meet's Zach





















Uncle Angelo meet's the newest "Z" in his family

Day 5 - June 7, 2008

Zach hanging out after surgery

Mia (Kristen's Mom) meets Zachary James














Uncle Doug meets Z-Man

Day 4 - June 6, 2008

Carter meets his brother for the first time!

Day 3 - June 5, 2008

Mommy gets to hold Zachary for the first time

Day 2 - June 4, 2008

Daddy gets to hold Little Z for the first time

Day 1 - June 3, 2008

Little Z in his "Space Shuttle"
3 Hours Old - Leaving for the NICU

Welcome To The World - Little Z

Dear beloved friends and family,

Jimmy and I are humbled, honored, and overwhelmed by the outpouring of support we have received from each of you. The last 4 days have been an absolute whirlwind of activity...none of which we could have prepared for and quite frankly, none of which we have had time to process. But fortunately, none of which we have had to face alone thanks to our precious Lord and each of you.

Our "chosen" son was born unexpectedly on Tuesday, June 3, at 7:10pm, weighing 3 lbs, 15 oz. On Monday night, I thought I was in labor with consistent and somewhat painful contractions followed by a bit of bleeding. We went to triage at Celebration Health and they decided to keep me overnight for observation because ultrasound and monitoring showed potential signs of fetal distress. When continued monitoring on Tuesday failed to show progress for the baby (and alternatively showed additional signs of distress), we decided to heed the advice of our doctors and bring our baby into the world by emergency C-section.

Jimmy and I thought our biggest battle would be caring for our pre-mature baby. Instead, he was born with a series of "anomalies" that when pieced together, amount to an unfortunate diagnosis: Trisomy 13. In essence, each cell in our baby boy's body has three copies of chromosome 13 instead of the usual two copies. When a child has an extra 13th chromosome, the genetic messages are confused and contradictory – there’s just too much to juggle. This results in multiple significant defects in major organ systems. Trisomy 13 (also called Patau Syndrome) is fatal.

We don't know how long our son, Zachary, with be on this Earth. What we do know is that our Dear Lord entrusted Jimmy and I to parent this special baby and for that, we are deeply humbled and grateful. We also know that he was sent to us with our Savior knowing that Jimmy and I are surrounded by people like you who will help us, learn with us, laugh with us, cry with us, and love our baby. We can not thank you enough for all you have already done and all we will ask of you in the days, weeks, and perhaps months to come. Our greatest wish is to show Zachary the kind of love he deserves to feel in the potentially very short time he has in this life.

Each of you has asked, "what can we do?" and in our flurry of activity, we are trying to figure that out. We thank you and we praise our God for sending you to us. We promise we will ask and we thank you for everything you have already done. But beyond that, we invite you to join us on our journey. We believe it will be filled with lessons of hope, grace, love, and precious reminders of God's great glory. We aren't asking, "why did this happen?" Instead, we are asking, "how do we honor our dear son?". Jimmy and I have an awesome account of the many blessings we have already been given in the few short days he has been in our lives. Imagine what is still to come!

Your prayers, calls, e-mails, and messages are welcome and warm our souls. Our dear friend Julie is helping us with a blog (one of the MANY inspirations from the Sams family) to share updated information and pictures.

We feel the tender embrace of each of you and our precious Lord.

With love,

Kristen, Jimmy, Carter, Addison, and Zachary (which means, "Remembered by the Lord"; in our house, we'll call him "Little Z", "Z-Man", "ZJT", etc.)

(If you want to know more about Trisomy 13, this is one of the more inspiring and well-done sites we've seen so far: http://www.livingwithtrisomy13.org/)