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  • David Huffman

A DAY WITH JOHN LEVI

Updated: Jun 1, 2019

April 3rd, 2019



Haylee and I are so thankful that you are taking the time to read about our journey. Seriously... Thank you. In a way, it is helpful and healing to know that others are willing to walk through our experiences with us, even if it is simply through reading this blog. It’s a big deal for us.  My hope today is to provide a detailed walk-through of the events on April 3rd, 2019. Haylee and I have talked about many moments from that beautiful and devastating day that we would like to expound upon in this blog later. But before we do, we want to provide an over-arching journal entry about the events that transpired so that you can see the day in whole. It may be lengthy, but hopefully it helps paint the picture for you.


Haylee and I spent most of the night before praying, preparing, and pondering. We had our C-section scheduled for 7:30am on Wednesday April 3rd, so we were making sure all of our ducks were in a row. Although we set the alarm for 4:50a, but I’m pretty sure we beat the alarm. By God’s grace, we were not fearful, but were definitely anxious because Haylee’s last C-section was a difficult experience. Either way, we were filled with anticipation because regardless of how the day was going to turn out.... we were going to meet our third child, John Levi.


We arrived to the Hospital around 5:30a, and were checked into our recovery room first. We sat with a nurse who walked us through the check-in process. All the nurses during our stay were fantastic. But after the nurse left, our OB, Dr Jen Esses, walked into the room and spoke with us. I can’t remember all the things she said, but her loving words and gentle presence were of great comfort to us. She loves the Lord and is very good at her job, so we knew that God had ordained all our steps up to this moment.


Haylee went back first to the Operating Room. I stayed with the RN supervisor, Amber, who was so caring and kind. And from the distance I could hear the sound of worship music blasting in the halls. One of the nurses said, “Esses is rocking out in there!” :)

I got my O.R. garb on, and was then led to Haylee’s side as they began to prep her for surgery. The anesthesiologist asked some questions, and Joanne (Haylee’s Nurse) stood by us and started to comfort us before we began. Then, Dr Esses, in her calm and professional demeanor told us that she and her assistant Crystal were going to begin the C-section.


I distinctly remember the music. She was the doctor for our second child, Hattie Grace, as well, and there was worship music playing then, too. But this time Dr Esses said she made a special playlist for John Levi. As they were performing the surgery itself, Haylee’s favorite worship song at the moment was playing... “Yet Not I, But Christ In Me.” So sweet. So perfect. Christ in Haylee gave her the peace for what was to come.


After a QUICK surgery, at around 8:03am, Dr Esses said, “He’s here!” However, I distinctly remember that he wasn’t crying. No noise. Nothing. She then handed our frail, tiny, Trisomy 18 baby boy over the curtain to Haylee and she held him on her chest. We both began to weep. It was obvious that he was not doing well. Both my other kids were a little blue and purple when they were born, but this was different. He was like a blueberry. And wasn’t moving.

As John Levi laid on Haylee’s chest, Dr Weiss checked his heart rate and it was at 20 or something like that. Super low. Then she backed away along with the other nurses to give us time because it appeared that he would be gone any second. Thankfully, Joanne grabbed my phone and became our photographer in the O.R, taking hundreds of pictures.


So we just sat there... crying, praying, kissing him and talking to him. Haylee blew me away. For a while I sat silent as she just kept reassuring him before he would pass, “You are so brave. You are a fighter. God loves you so much. We love you. You are so brave. I’m so sorry. It’s not supposed to be this way. It’s ok, you will be with Jesus soon.” I was brought to tears at both the plight of my son, and also the strength of his mother. Yet... it was but Christ in her.


After a few minutes, everyone suggested that I hold him too. So they took him off Haylee’s chest and handed this little 3lb 4oz baby to me. He looked gone already and wasn’t moving much. No noise. Nothing. I stood up holding him, and began to sing to him the worship song that was playing. Kari Jobe’s song “Healer.”

I believe... You’re my Healer.

I believe.. You are all I need.

I believe... You’re my portion.

I believe... You’re more than enough for me.

Jesus you’re all I need.”

As I was singing, John Levi began to make noises. And then he started to cry. And then he started to look flush in color. Dr Weiss quickly came over to check his heart rate. By GOD’s GRACE and KINDNESS... John Levi’s heart rate jumped up to 120! Amazing! All the nurses began to cry, and Haylee and I cried. After we took off his cord, we gave him back to Haylee and I just kept singing whatever song was next. It was the most beautiful, tear-filled yet joy-filled 15 minutes of my life. He started to move more and kept making noises and crying. He was breathing on his own, something that was not promised to us before his birth.


I don’t remember how long it really was, but eventually we ended up in the recovery room. They put us in a really big room far away from the others, which was a grace in itself. He kept looking strong. The nurses and doctors gathered pretty regularly in the corner to discuss what was happening. Dr Weiss was amazing. She came to us and very kindly and realistically told us that this was amazing, and that we just wait and see. But she also said there’s a good chance that he may tucker out at some point so we need to just enjoy the moments we have.


Then I did the “Dad thing” and started to count his fingers and toes. Wait.... 12? He has 12 fingers??? He had an extra digit on each hand. Of course it was a vestigial finger, but it was surprising for me nonetheless. Haylee and I didn’t know how long we would have time with him. Though he was stronger than expected, we could still see that it was probably going to be brief. He was so frail. So small. The doctor kept encouraging us and preparing us, too.


After another hour or so of him doing well, we called our families to come back and meet him while he was still alive. Haylee’s grandparents, her mom and dad, and also my mother and father were all there! And then Haylee’s aunt brought our kids, Asher and Hattie Grace. The whole family got to see him and hold him. One by one they all sat in the rocking chair, rocking him back and forth and crying. Even Asher and Hattie got to hold him. Such a beautiful and sweet moment that we didn’t think was going to be possible when he was born. Mandi Pool (Haylee’s friend and business partner in photography) came back for 20 min or so to take pictures while his heart rate was good. Mandi’s husband Josh, one of my fellow pastors at church, came back with her for that time. We are so thankful for those memories she captured!



John Levi’s heart began to fluctuate so we asked everyone to step out so we can be with him. This happened over and over again. The family came back in another time or so, but most of the time it was just Haylee and I and John Levi. We kept talking to him, singing to him, praying for him, and thanking God for every. single. minute.


Our hearts were filled with so many emotions. It was all I could do but break out in tears when the nurses came in and told Haylee and I that upwards of forty people from our church were in the chapel downstairs praying and interceding for us and John Levi. So beautiful. Such a picture of true community and love for one another.


We spent an entire 7 hours with John Levi that day. Seven hours didn’t seem possible at first. The nurses thought he would die immediately, but God sustained him for that time. By the way... 7 is the Biblical number for Holiness and Completeness. It also symbolizes Rest (see Gen. 1-2). So we were so thankful for those seven hours. Eventually he opened his eyes and we got to look deeply into his with joy. It was beautiful.


Around 2:45p he began to struggle one final time. His heart rate slowly dropped. Amber just sat there with us, along with Joanne, and periodically checked his heart as he lay quietly on Haylee’s chest. We knew this was the moment. And at 3:11pm, in his sleep, John-Levi slipped away to be with Jesus. On the seventh hour, he entered into eternal rest.


Everyone left the room so it was just Haylee and I holding this little body. I knelt by the bed and began to weep.. Uncontrollably. Looking back, I think I wept for so many reasons. I was grieved that Trisomy 18 exists. I was distraught that my wife had to experience this. I was sad that I couldn’t be John Levi’s dad for longer. I was thankful that God granted us time. The sober reality of death was there, but... not for long. In my heart God replaced it with the gentle reminder that Jesus Christ has overcome death.


So... I grabbed my guitar and began to sing a worship song to the Lord. “Better is one day in your courts, better is one day in your house, better is one day in your courts than a thousand elsewhere.” It is true... John Levi was with his Maker. No more Trisomy 18.


The hours that followed were surreal. Amber and some of the other nurses helped us with our keepsakes. We took footprints. We got pictures. We even made a mould of his 6 fingered hand. All of which we are so grateful for as we look back. And then we rested and waited for Haylee to heal. We went home two days later.


Leaving the Family Birth Place at Sacred Heart WITHOUT a baby was one of the most difficult things I have ever done. We sat in the car and cried and cried. He should be with us. He should be here. We definitely felt a void, and frankly will probably always feel the loss.


Looking back, Haylee and I have tried together to fill our minds and hearts with thankfulness and gratitude so that there would be no room for bitterness to creep in. And we are so very grateful that the Lord would let us be John Levi’s parents for those months in the womb, and 7 hours after.

We will never forget this day! And while we feel devastated (overcome with sorrow), we do NOT despair (lose heart)... Because our Redeemer lives. And we trust ALL of our kids in the hands of our Creator.

The Lord Giveth, the Lord taketh away.

May the name of the LORD our God be praised.” Job 1:21






Thank you to all those involved on John Levi’s Day:

Amber (RN Supervisor & John Levi’s Nurse)

Dr Weiss (Pediatrician)

Joanne (Haylee’s nurse)

Crystal (OB Nurse)

Dr Esses (OB)

Peyton (Haylee’s nurse)


#graceformore

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