Infant Loss & Jesus: My Full Story From My Heart

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Trigger Warning

Since my goal for New Mercy Moms is to empower moms who’ve suffered miscarriage or infant loss to find hope and healing in Jesus, I usually try to avoid writing about anything that would be a trigger.

It’s hard to be encouraged on your grief journey if you keep getting knocked down, am I right? At least that’s the way I feel.

But I’ve been asked by several of y’all about my story, and I believe that sharing it can help. It may help those who’ve experienced loss to know you’re not alone. It may help those who have not experienced loss to be able to empathize better with a loved one who has.

All that to say - the story, the pictures, the memories - will probably trigger someone. So proceed with caution or feel free to skip this altogether.

Check out these other posts that do not contain triggers:

Hope and healing are possible on this journey of grief, but even now I can’t always take in a story that will probably trigger me.

In fact, just yesterday I was watching an old Mr. Roger’s Neighborhood with my child, and Mr. Rogers was sharing about what it’s like to go to the hospital. Oh. my. word. I was left sobbing and shaking. Was it sad? No. Did it bring back some terribly hard memories? Yes. And then I had to work through those memories again (using the techniques I teach in New Mercy Moms | the workshop).

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I originally wrote this story about a month after my firstborn Jack passed away. It was very fresh. I struggled so much. Looking back, I think it got harder in a lot of ways as time went on too. But God never stopped pursuing faithless, little ol’ me. And that’s one thing that I’m definitely able to see more clearly as time goes on.

I can look back now and see God’s good sovereignty over every little thing. Sure, I still don’t understand it all. But I know it wasn’t chaos, and I know it could’ve been worse if not for God. So you’ll notice some “Looking Back” sections that I’ve added where time gave me perspective.

Some may read this and say “that’s super hard,” while others may read and think “Girl, lucky you. You heard your baby’s cry and he held your finger.” I know! I don’t take any of that for granted, believe me! I count each second with my baby as a special gift that’s completely undeserved. One thing I’ve learned is that loss – no matter what it looks like – is the worst and deepest kind of hard ever.

Well, whatever you get from this, my goal is (as always) Soli Deo Gloria – glory to God alone!

Kathy

Looking Back

I stood in front of my bathroom mirror shaking. Anxiety started to seize my heart and take my breath away. It was 2 weeks before my due date, and the thought occurred to me, “What if my baby dies? I think I’m going to lose my baby!” I had no reason to think this. I had what my care providers and I thought was a very healthy pregnancy. But it didn’t matter.

I was in my bathroom for what felt like hours, but was probably only minutes. Thoughts came through my head: “God, there’s gotta be something I can do! Is there any way to save my baby? Is there anything I can do to make sure they’re okay??”

The Holy Spirit replied, “The heart of man plans his way, but the Lord establishes his steps.”

Me: “But God what if my baby dies!! I can’t handle that! I can’t live! What if he dies?!!

The Holy Spirit: “My flesh and my heart may fail, but God is the strength of my heart.”

Immediately a calmness came, clarity of mind, and the out-of-control fire of fear and anxiety simmered down to a low smolder.

Me: [*Much sobbing*] “Okay, God, even if the worst happens I know you will help me. I don’t want it! But okay…”

I realized after that it must’ve been the Holy Spirit and not just my own thoughts because they were Bible verses (Proverbs 16:9 and Psalm 73:26) and they were verses I hadn’t read in a very long time, let alone memorized.

My Life Is Changed Forever

It was November 5th, and my husband and I were getting some last-minute family pictures before my due date. We walked all around our local park. It was really cold, but we had fun and made some memories.

My mom had come to visit so she could help us out after our baby was born. That evening she made us a delicious sweet potato soup. Halfway through our meal, I noticed that the Braxton Hicks contractions I had been having the last couple of weeks started to get stronger.

I didn't want to get too excited too soon, so I tried to ignore it as long as I could. Finally, I couldn't help it. I started timing them. Five minutes apart! Woohoo! Some more time passes... Three minutes apart! I think this is the real thing!

It was around 1 or 2 a.m., and I called my midwife to let her know where I was in my labor. After hearing me go through a couple of contractions, she told me to come into the birth center around 3 a.m. I tried to sleep as best I could because I assumed I would have a long labor. Ha! Good luck trying to sleep when your long-awaited baby has decided it's time!

The drive there was super uncomfortable, but I was excited and could not wait to meet my little baby. My room at the birth center was all set up and ready to go. Finally, it was time to meet the one who's been kicking me in the ribs and giving me heartburn for 9 months!

My husband helped me non-stop through my entire labor: back massage, counter pressure, essential oils, labor music, etc. He was my mainstay. I didn't think I would want my mom to help me too, but I'm so glad she was there because I couldn't have done it without her help. She supported my arms through my contractions and read me the Bible verses that I wrote in my little labor book.

It was almost 10:30 p.m. on November 6th, and after over 20 hours of labor, about 3 1/2 hours of pushing, using a birthing ball, 3 different birthing stools, birth tub, etc. etc. my baby was almost here!

The Most Glorious Moment of My Life

I moved over to the birthing stool and gathered up all my strength to make one final push... my baby was born!!! My mom and midwife caught my baby and then immediately handed him to me. He was so long and beautiful! What is the gender?? He's a boy!!

The Moment Everything Turned

The next thing I know my midwife took my baby and placed him on the floor in front of me. My son let out a small cry then started to fade. I was alarmed and didn't know what was going on. The cord was cut. After about a minute of trying to give him air with a bag, she moved him to the warming table to give him oxygen and CPR. The birth assistant called 911. Only a few minutes passed till the EMTs arrived.

As they were trying to stabilize my son's vitals to no avail, they called out asking for his name. With all the labor and birth hormones floating through me, I was so confused. I did everything I could to focus. Jack! His name is Jack! Then they whisked him away.

The Whirlwind

I was so confused and dizzy from such a long, hard, and exhausting labor. I was given some things to help me not go into shock or lose any more blood. My mom went with Jack, but my husband stayed with me because he was afraid he might lose me. Hindsight is 20/20, and we should've had my husband go with Jack. But we didn't know. We made what we thought was the best decision at the time.

Not too much time passed before my husband joined my mom, mother-in-law, and my son Jack at the hospital. My pastor and another friend met up with them too, and my pastor's wife came to help me. Then my mom came back to the birth center and we all decided I should get an ambulance ride over to the hospital so I could be with Jack and my husband.

Looking Back

My pastor’s wife asked me as she was feeding me after birth (I was so messed up after the hard labor, confusion, and emotions), “How are you doing? What are you thinking?”

I said, “All I can think about is ‘My flesh and my heart may fail but God is the strength of my heart.’ It keeps echoing through my head. That’s all I can think about.”

That’s the grace of God in the dark valley of the shadow of death.

Our First Night As A Family

The doctor told us that my son Jack was born with Congenital Diaphragmatic Hernia (CDH). That's where a hole in the diaphragm causes his organs to be in his chest rather than in the abdominal cavity.

Jack looked so tiny and helpless lying there with all these tubes coming in and out of him. My precious son. Was he in pain? They assured me he wasn't. Will he make it? The doctor said 5-10% chance he would make it through the night. Oh, my heart! Please let me wake up from this nightmare!

My husband and I told the doctor and NICU staff to do everything they could to keep him alive. Hardly sleeping that night, we were in constant prayer. The verse that kept echoing through my heart since they first whisked my son away was Psalm 73:26, "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

The Helicopter Ride

We were told that if Jack made it through the night and stabilized enough by tomorrow then he could be life flighted over to a Level 4 NICU at the University of Utah where he could hopefully receive the needed surgeries to fix his CDH and hopefully save his life.

God did just that. Jack became stable enough for him to be put on the NICU helicopter and be life-flighted to the children’s hospital. My husband got to ride with Jack and the crew, and my family and I drove to meet up with them. By this time my dad and father-in-law had flown in to help out as well. I'm so thankful.

My husband called to tell me Jack needed surgery ASAP to give him any chance of survival. Of course, we said yes. By the time I arrived, they were finishing up Jack's ECMO surgery. My husband pushed my wheelchair to our son's new NICU room.

Oh, my little baby! Hooked up to so many machines, hanging on by a thread! I once dreamed of the day my baby would be born when I could give skin-to-skin and bond with this precious new life. But we weren't allowed to touch him. The neurologist was concerned about severe brain damage and too much stimulation could hurt him at this point.

NICU Parents of a NICU Baby

For the foreseeable future, we would be NICU parents. Thankfully, we lived only about 10 minutes from the hospital. It was nice to be able to go home, get a shower, sleep in our own bed, make our own food, etc. But my husband and I also used the Ronald McDonald rooms in the hospital so we could stay close to our son on crucial nights, like after surgeries and such. I've never been so thankful for McDonald's.

My milk came in and I had to pump. Not easy! God blessed me with a good milk supply that I stored up for Jack in the hospital's milk bank. But the stress of watching my son's vitals go up and down, lack of sleep, and not knowing how to pump well caused me to get 3 infections in 3 weeks.

When you have one of those, you feel like you're dying. Tried antibiotics, didn't work for me. Tried a bunch of natural remedies, and found some that worked well and fast. I hate that I had those infections. It kept me home when I wanted to be with my baby.

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Looking Back

There was a pivotal time for me in the hospital. It was his first full day up at the new hospital. Jack’s second day of life. We just got through talking with the doctor about how his first surgery went. We were sitting in the hallway and I was sort of going through a care package bag that some dear friends from our new church (we had just moved across country a few months before) had brought that was full of very practical and thoughtful things.

I was wrestling in my mind and heart: “I just want to be able to trust and hold onto what the doctors say as my hope! I just want to know that my baby will be okay!”

The Holy Spirit: “Hope in God”

Me: “But…But…”

Jesus: “I have prayed for you, that your faith would not fail.”

That was the moment God gave me the strength to keep going to him to find hope.

Special Moments

Jack was improving after a couple of days, so they allowed us to touch him. I'm so thankful.

At first, I could only hold his tiny hand as he lay still, his only movement coming from the oxygen machine. But then one day as I placed my finger in his little palm, he wrapped his fingers around mine and gripped tightly! I touched his foot and his sweet toes curled! Oh, my heart!

Another day passed, and I saw my son's eyes for the first time. My love! My sweet baby boy had dark brown hair and deep blue eyes! He was so handsome! Sometimes he would suck on his oxygen tube, raise his eyebrows, or stick out his little tongue. So cute!

From Fear to Praise

Two weeks, 3 surgeries, and a plethora of scary moments later, Jack seemed to be on the mend. His last surgery was to pull his organs through the hole in his diaphragm and close the hole.

Right before he went in for that surgery, they told us to say our goodbyes just in case. My heart sank and I started to have severe anxiety.

We went to wait in a family room and a few of our friends came by to be with us and pray with us. They asked us how they could best help, and my husband told them what we were both thinking. We knew that the only words that could calm our souls in that moment were God's words. So we sat in the room reading Bible passages to each other intermixed with prayer.

We read in Psalms, Isaiah, Revelation, and others. God did a mighty work in my heart through His Word. He took a heart paralyzed by fear and turned it into a heart of praise. I had such deep peace in the midst of that storm.

After the 2-hour surgery, the surgeons came in to tell us how it went. Because Jack's abdominal cavity was not large enough to fit all his organs, they had to place them in a sterile bag on the outside of his abdomen. They said it went well though and were cautiously optimistic. The doctors and nurses kept reminding us that he was still the sickest baby in the hospital.

The Worst Night of My Life

The day after his surgery, Jack seemed to be doing a little better. Not as well as we hoped, but he still showed some slight improvement which made it his best day all week.

Around 7:30 or 8 p.m., the nurse was trying to draw some blood but was having trouble. She got what she needed, but then suddenly Jack's blood pressure spiked then plummeted. All at once his numbers started to drop. I watched in horror as I heard "Code Blue..." over the intercom and doctors and nurses rushed in.

For hours they worked on my baby Jack. Trying to carefully balance his cocktail of IV medications, while giving him blood transfusions, epinephrine, blood pressure meds, etc. Then the surgeon told us that his organs were filling with blood and they needed to open his bag to relieve the pressure. With no time to sterilize a thing, they did what they needed to do. Very disturbing for me to watch. But I couldn't look away from my son!

We asked them to do everything they could.

Once they exhausted every method, our nurse practitioner and friend knelt beside us. He said with a broken heart that they've done all they could do and Jack's heart is kept beating now only by epinephrine. We needed to make a decision. Hardest decision of my life! We decided Jack needed to be held and know he was loved as he passed away.

The nurses wrapped my son up in a blanket and handed him to me. I wept loudly. My husband held me and Jack as we both cried. I then gently handed Jack to my husband so he could hold our son for the first time.

Hardest moment of my life: holding my son as his last breath left him.

My mommy heart and empty arms ache with the deepest pain. The hole in my heart is a raw flesh wound that will never heal till I hold my son again.

Infant Loss Aftermath

Since losing my son, my whole world has been shaken.

I've wrestled with some deep, hard questions.
I've questioned my faith.
I've questioned God.
I've questioned everything.

Perhaps, if I am able, I will share those in future posts.

I want to end this post with hope though. God has truly sustained me and been faithful in spite of my faithlessness.

Looking Back

I have cried so much while writing this, and it’s been 8 years since my baby passed away. Infant loss is something I never imagined would be a part of my story. But that last sentence still holds true: God has truly sustained me and been faithful in spite of my faithlessness.