A blog about the life of the Balentine family: Adam, Amy, Teddy, Simon, Thomas, Peter and Goldie

Thursday, May 14, 2015

The Gift of Time


Exodus 3:5
…take off your shoes, for the ground you are standing upon is sacred.

Tonight, we begin the first anniversary celebration of Simon’s life.  What will this week feel like?  I have committed to feeling every emotion that comes over me, and am committed to not stuffing them down.  I want to try to relive the raw passion I did last year at this time – impossible, but I want to try my best to recall the feelings of gratitude and complete dependence on our Holy God.  

My mind travels effortlessly back to the moment Simon was born. We weren’t sure if he would be alive as we decided to forego fetal heart monitoring – we thought if he died during labor, it might be hard for me to continue to labor knowing his soul had been taken already.  He was moving at birth, arms and legs strongly squirming – I didn’t even have to ask if he was alive.  He was!  I could tell without hesitation!  My doctor placed Simon quickly on my chest and all of the prayers from the previous five months had been graciously answered in that moment.  He breathed!  And not only was he breathing, he was looking at Adam and me!  I shouted praises to God thanking him for his mercy and likely subconsciously for the fact that labor was complete. 

Following Simon’s birth, all we wanted was time with him.  It was simple.  We were doing our best in those moments of the unknown to claim joy and celebrate his life. 

Due to Simon’s chromosomal condition, Trisomy 13, we learned that Simon had a 33% chance of dying in utero, a 33% chance of him dying during labor, and 33% change of him breathing and living briefly.  So, we prepared for the 66% chance that he wouldn’t ever breathe and 100% that he wouldn’t be with us long.  We prepared to deliver a silent baby.  While our birth plan was extensive, our plan was the same, whether he breathed or not.  We wanted to study him, memorize him, bathe him, smell him, read to him, dedicate him to Christ, sing happy birthday to him, eat his birthday cake, have his big brother Teddy meet him, have his grandparents, aunts, uncles and close friends meet him.  Just show him love and hold his precious body.  That’s what every family wants following the birth of their baby. That sacred time of grace and glory.

Around the time Simon was born in May 2014, a new device was created to aid families facing stillbirth or death of their infant shortly after birth.  This item is called the CuddleCot™.  The CuddleCot system is used to cool a baby who was stillborn or lost shortly after birth so the baby may remain in the hospital room with the family.  The CuddleCot grants the family precious, uninterrupted time with their child so they aren't forced to say goodbye just a few short hours after laying eyes on their son or daughter.  

According to many sources, a staggering 26,000 families will experience the loss of their baby at birth in 2015 in the US alone.

In memory of our two sons who both died in 2014 - Simon who lived one week, and Thomas who died at 13 weeks gestation - we are fundraising during the first anniversary week of Simon’s life (May 14, 2015 at 9:55pm through May 21, 2015 at 10:17pm), with donation to take place on what would've been Thomas' due date, Friday, May 22.  We are raising funds with the goal to give precious time to families who have lost their baby boy or girl prior to birth, during birth or shortly after birth.  

We will donate one Cuddle Cot to St. Luke's Hospital Kansas City.  St. Luke's (KC Plaza location) is where Simon, Thomas, and our living two and a half year old son, Teddy, were born. An average of 80 families will experience this sort of loss at St. Luke's Hospital Kansas City in 2015.

This unit might seem quite morbid or even unpleasant to many.  However, this is the sad reality for many families. It is our heart's desire to assist by giving precious moments to these families who want to spend time memorizing their baby's face, singing to their baby, and simply loving on their baby.  The CuddleCot could give many families the ability to say goodbye when they are ready, rather than feel the added pressure of time slipping away.  It also assists in their reclaiming of joy during a tragic, and often unexpected loss.

Here are a few key things the CuddleCot provides:
-parents spend time with baby rather than transferring baby back-and-forth between the morgue
-extended family to meet the baby
-parents can bond with the baby as a family
-parents can sleep in the same room as the baby
-baby can stay with mom possibly the entire time she is in the hospital
-option to take baby home to "wake"

Costs:
The CuddleCot system costs $2,764.00
The Moses basket costs $35.00
Our goal is to raise $2,800.00

Should we exceed our goal, we plan to use additional funds for a pregnancy and infant loss support group Amy started called You Made Me Mom.


Here are some of the ways any excess funds would be spent in support of YMMM:
-business cards for chapter leaders
-printed one page materials for mothers who experience miscarriage, stillbirth or infant loss distributed to local hospitals
-bassinet program (various sizes of bassinets available for pick up at the Balentine house for families who experience miscarriage or stillbirth, bassinets in three appropriate sizes for age of baby's gestation)
-officially apply for 501c3 status for You Made Me Mom
-donate a second CuddleCot to another hospital or facility in Kansas City
-funds for You Made Me Mom national chapter leaders to meet once a year for prayer and to discuss organization direction


A few final things to mention:

-This is the first CuddleCot in the Kansas City area.  The next closest cot is in Kentucky 400 miles away.
-This is the 32nd CuddleCot in the United States.

Thank you for considering a donation to the Balentine Family Gift of Time CuddleCot fund which will honor and continue the legacies of our sons Simon and Thomas.
Would you be willing to help us reclaim joy and give time to these families?  
If so, please follow this link to donate.
With Love,
Amy and Adam Balentine



2 comments:

  1. Amy and Adam, I cannot express to you how your story has touched my heart. I am a labor nurse with Luke's, and have wanted to get a Cuddle Cot to Kansas City as well. I am tearful and excited as I read your story just as I was when I heard wind of this amazing gift that may be coming to our health system. I have not been with the Luke's system long. Only about 6 months now... I worked as a labor nurse for about 8 yrs at Truman downtown until last winter. Last January, I worked a Friday night in the triage, and I sneaked a peek at my little girl with the US when nobody was around. I had no idea that would be 12 hours before I was told those words no mother and father want to hear. At 34 weeks, I was induced to deliver our baby girl. On Sunday January 12, 2014 we said, “hello and goodbye.” My husband James and I spent precious time with her and had her baptized by our Pastor, and went home to a new world. Our daughter, Frances was our only girl of our 6 children. I think this gift you share through your story, the group, and the Cuddle Cot is absolutely amazing! I will keep your angels close to my heart, and think of Simon and Thomas often, especially when I am walking those corridors. Bless you for this generous donation. I hope that I am able to be there as you make your dedication.

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    1. Randi,
      I am just seeing your post today (6/3/15) and wanted to respond.
      First, I would love to hear more about Frances. I have no doubt she was a delight to hold and memorize. What was she like? Would you tell me? I am so terribly sorry she doesn't reside here on earth with you, but thankful she is in glory with Jesus.
      I am unsure if you were at the CuddleCot donation - forgive me if we met. I would love to meet you again and invite you to join us at our monthly You Made Me Mom gathers (www.youmadememom.com). I am praying for you too. As a bereaved mom and as a labor nurse. Thank you for your sharing of this sweet note.
      ~Amy

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