Simon & Thomas Balentine

I am so thankful God doesn’t hand us a big book of our life’s story on the day of our birth or on our wedding day.  Anticipating the pain would spoil the goodness that comes from both the heartache and the beauty that comes from the ashes.

 

My husband, Adam, and I were married for three years before welcoming our first born, Theodore (Teddy) Boyd in October 2012.  Our first pregnancy was innocent, beautiful, and truly easy.  One year after the birth of Teddy and on our fourth anniversary, much to our surprise, we were expecting again!  We were so thankful for this blessing and excited for our home to turn into a crazy house with two babies under two. 

 

Before Adam and I were married I remember having discussions (maybe as a result of a specific question in our pre-marriage class) in which we agreed that should God bless us with children we would choose to not do any special testing on our babies in utero.  We agreed we wanted our babies, entrusted to us by God, no matter what. 

 

On January 8, 2014, we went into for our routine 20 week ultrasound for baby #2.  I was about 18 weeks pregnant and we were excited to see this life inside of me.  The sonographer spent some time doing the normal anatomy check and found that our baby might have enlarged kidneys.  We were surprised, but decided to take their professional advice and receive a level two ultrasound on January 15th.  Between the 8th and the 15th, we waited, prayed, and hoped the sonographer had mis-measured our baby’s kidneys.  We did very little to prepare for the 15th.  We weren’t the googling type with this sort of thing, so we just waited to see what the 15th brought to us.  I had no idea what an in-depth anatomy scan the level two ultrasound would bring.  I was thinking we would be in-and-out in about 20 minutes after they looked at the kidneys and then told me either they were fine or not.  Adam was tied up at work, so I went with his mom and Teddy. 

 

After the hour-and-a-half long detailed sonogram was complete the sonographer raised the lights and began to tell us that she was starting to see things that concerned her about our baby. We then met with a nurse practitioner and spoke with the neonatologist, Dr. Lu, on the phone.  Dr. Lu explained that our baby had a cleft lip, cleft palate, polydactyly (extra digits –they need a new name for this, extra digits are cute and deserve a cuter name!), and kidney hydronephrosis.  My head was spinning and tears were falling down my face.  I needed my husband badly.   I was shocked and exhausted and felt like I couldn’t fully explain to Adam all I had learned and I asked Dr. Lu if he would meet with Adam and me to further explain what we had learned.  Dr. Lu was so kind and offered to meet with us the next afternoon.  I called Adam on the drive home and told him about our sweet baby.  I think God drove my car home that day, as I can barely remember the drive.

After a night of very little sleep, we headed into Dr. Lu’s office.  He was compassionate and thorough when speaking with us.  At the beginning of this meeting, my main focus was to learn about nursing and feeding our baby who had a cleft lip and palate.   No amnio.  No testing.  No more details needed to be known about this sweet child.  We knew enough.  However, right before our meeting concluded, I asked Dr. Lu to review the ultrasound scans images with Adam and I from the previous day.  He said, “Better yet, let’s just see the baby live and review through another ultrasound.”  We thought this was a great idea.  Dr. Lu and the sonogram tech, Anne, took a look at our sweet little boy.  Simon was in a perfect position for the doctor and Anne to see Simon’s brain.  He told us he was seeing holoprosencephaly (the brain failing to develop into two hemispheres) as well as another brain issue.  We found additional digits and a few other issues which perfectly align with Trisomy 13.  Dr. Lu was so kind in his delivery of Simon’s additional anomalies.  While I could hardly believe what my ears were hearing, Adam and I knew what we wanted to do – we barely even had to discuss.  We knew we wanted to go ahead and receive an amniocentesis to determine if Simon was carrying an extra 13th chromosome and also wanted to go ahead and confirm his gender.  This was now our time to call our child by name and get to know him or her. 

 

As we walked out of the hospital on January 16, Jesus had to be moving our legs and feet one in front of the other.  I felt a bit frozen.  Adam was holding me up and we wept so hard together in the parking lot of the hospital.  We drove home and began to share what we had learned with our parents, siblings, and closest friends.  We needed prayer specifically from our inner circle. Friday, January 17 was the amnio.  We prayed to God for answers from the amnio and that our baby wouldn’t feel an ounce of suffering (and I can assure you he felt no suffering, only love his entire life).  On Monday, January 20 at 12:30pm, we received the information that our baby had an extra 13th chromosome in all of his cells.  The most exciting news came to us as well during that call…we were having a baby boy!   We named him Simon Adam Balentine.

Once we had confirmation that Simon had Trisomy 13, we decided it was best for our care to return to my regular OB and for this pregnancy to be treated as normally as possible.  We didn’t need any further tests, guesses or predictions of how or when Simon may enter our world.  We understood the basics about his challenges and knew the staggering statistics about Trisomy 13 babies and that was enough for us.   We just wanted to spend time with our little boy - singing, dancing, and reading to him.  And telling him all about our family and our Savior, who he would meet sooner than mommy and daddy (lucky boy).   As we saw it, we were still having a baby with normal needs and normal desires. More than anything, Simon needed to feel and hear his mommy and daddy speak love to him. 

 

The months passed and Simon lived inside my womb.  It was truly a time of joy and grief.  How is this child so alive inside of me going to die?  Hard to believe most days. 

 

On Wednesday, May 14, 2014, at 36 weeks + 4 days into Simon’s pregnancy, contractions started.   I labored throughout the house as we prepped to meet Simon.  By 7:30pm or so, Adam and I started to roughly time the contractions - they were coming very quickly.  Teddy was sleeping over at Adam's parent's house, as we were supposed to have a date night. We checked into St. Luke's on the Plaza a little after 9pm.  I was already 8/9cm.  We declined fetal monitoring as I did not want to know if Simon had died during labor. So often, babies as sick as Simon do not survive the stress of childbirth.  So we anticipated meeting Simon stillborn.

However, that was not God’s story for Simon. Simon Adam Balentine came into this world ever so sweetly at 9:55pm.  I pushed twice and our doctor placed Simon on my chest.  The room felt holy, life stood still, and only words of praise to God came out of our mouths.  Simon's eyes were open and his legs were kicking.  After a several long minutes he began to use his voice and we heard him for the first time. Grace upon grace – answered prayer after answered prayer.

 

Eight hours after birth, we had a BIRTHday party in the hospital, complete with cake, balloons, and celebration. 

Fifteen hours after Simon’s birth, he was still living!  Our plan was to leave for home as soon as possible after birth to have Simon and his sweet spirit in our home.  We got to go home with him!  A DREAM!  For seven beautiful days and twenty-two grace-filled minutes, Simon showed us what fight and power look like in a 4 lb. 15 oz. body.  Each moment with Simon was a gift.  Not a single second of the six days that we were able to spend with him at home received any planning.  We were pulling Teddy's newborn supplies out of storage in our basement and dusting them off with big smiles and full hearts.

 

Simon's story is one of victory.  He has now achieved the ultimate victory over death.  Joy filled his sweet face as he set foot in the Kingdom of Heaven.  A stadium of angels cheered thunderous cheers for him as he ran to the arms of Jesus and embraced Him.  He is basking in a kind of love that his mommy and daddy never could have given him.  His new body feels no pain. He is dancing and running through pristine green fields with all of our friends and relatives who surrendered to Christ, died and live eternally in Heaven.

Three months after Simon’s death, we were excited to see two pink lines – we were pregnant again.  Our third child’s expected delivery date was May 22, 2015 – one year and one day after Simon’s death.  How poetic.  How perfect!  

 

In the 12th week of baby #3’s life, I started to bleed.  I knew right away something wasn’t right.  I feared miscarriage.  We raced to labor and delivery to have baby checked on a sonogram.  Baby #3 was alive!  Baby was wiggling and bopping around.  The bleeding stopped but picked back up about a week later.  I set up another appointment with my doctor to check out baby and again, but baby was ok and the bleeding stopped.  Then at 13 weeks + 4 days pregnant, I went in for a regular scheduled appointment.  My doctor didn’t want to put me through the agony of trying to find a heartbeat on the doppler so she sent us straight in for sonogram.  Adam wasn’t supposed to be able to come to this appointment due to work obligations, but finished the meeting early and came.  Teddy was with us as well. 

 

The sonographer placed the wand on my belly and as soon as the grainy black-and-white image of the baby came on the screen, I knew.  Our baby's lifeless body was scrunched up and motionless - unlike Teddy and Simon who were always playfully moving each time we got a glimpse of them in the womb.  I cried out in agony from the doctor's table.  Pain was unleashed from the deep.  Teddy looked at Adam with a concerned but sweet and playful look.   Teddy said, "Mommy sad."  With wet faces and broken hearts we left the doctor's office through the back door and decided to take the stairs.  Adam picked up Teddy and said, "I'd carry you both if I could."  And once again, our Jesus was literally and figuratively guiding our steps out of the doctor’s office.  How could this be happening?  Another loss?  Enough already! 

We were still reeling in the wake of Simon's death, just six months to the day, and now we feel death upon death.  We felt both blindsided and prepared all at the same time.  However, we quickly remembered God doesn’t promise to shield us from all tragedy but promises to shield and protect us as we walk through tragedy. 

On Sunday, November 23 at 12:30am, I delivered a small three inch little boy weighing just a couple ounces.  His lifeless frame was perfect.  He had ten fingers and ten toes.  We could even tell by sight he was in fact a little boy.  Everything was simply miraculous about him.  This tiny babe took my breath away - I was his mommy.  I am burdened with the fact that I delivered and met him all too soon.  However, I am thankful God allowed me to birth his body perfectly which allowed for us to place our eyes on him for the first and last time.  We named this child, our third boy, Thomas Job Balentine.

After the loss of Thomas, we desired normalcy.  A period of quiet.  Of letting my body rest.  We were tired.  We had decided it might be best to wait until after Simon’s first birthday and Thomas’ due date (May 2015) to try to conceive again.  However, much to or surprise, God had a different plan.  Our prayer was to trust His way, even though we were so confused and at times felt forgotten.  At the end of January 2015, two months after the loss of Thomas, we were pregnant again.  We praised God for his timing and for our fertility.  We knew our Lord was holding us in the palm of his hand.  We walked through the pregnancy hand-in-hand with the Lord and countless others who were praying for us.  We feared the worst – another loss, but knew either way that Our Father would get us through ANYTHING. I committed to be thankful in all things – the small and the big – and acknowledged them daily and even in the moment.  I prayed for a healthy pregnancy and child who would come home to live a long life.  But, I truly surrendered to God and trusted in His plan.  So often, my prayer was simple.  Your will, God.  Nothing more.  Nothing less. 

 

Pregnancy after loss is a hard and confusing road.  Complete surrender to Christ is the only way to walk the journey. 

 

On Thursday, September 24 of this year, we welcomed our fourth son into the world.  We named him Peter Simon.  His life is bringing much healing to our family.

 

We are so thankful to be chosen to be parents to each one of our children.  We are thankful God continues to remind us of His order:  God first, our marriage second and our children third.  We continue to ask the Prince of Peace to use our sons’ life stories for His glory and to continue to give purpose to suffering the loss of two sons.  Our Lord reigns supreme.  We long for his return, to settle the score and make all things new.  How glorious it will be to enjoy the New Heavens and New Earth with our family together, fully restored, and in the presence of Our Creator.

Written by Amy Balentine; Teddy, Simon, Thomas, and Peter's Mommy

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Five Years in Heaven.

October 22, 2019

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