Truett's Testimony

To tell the full testimony of Truett’s heart healing, I have to start 29 years ago when my older sister Megan was born with a congenital heart defect. She was born at the Children’s Hospital of Philadelphia (CHOP) and underwent heart surgery two days after she was born to repair the defect. Unfortunately, she passed away shortly after surgery which was a devastating loss to my parents and extended family. The dreams they had for my sister turned to mourning and grief and pain. However, the Lord used this pain to turn them to Jesus and gave them a reason to desperately cry out for the peace and comfort of Jesus. 

Fast forward 29 years, in August of 2023, Paul and I were pregnant with our second baby and we were sent to CHOP to investigate some ultrasounds that suggested there was some abnormality in our baby’s heart. The fear and pain of years ago resurfaced as Paul and I were brought into a room full of windows overlooking the city of Philadelphia and told our baby had a congenital heart defect that would require open heart surgery a few months after birth. Shortly after that initial diagnosis, we left for a babymoon/work trip to the Bahamas and processed the news and the heavy weight of what we heard in the meeting at CHOP. We cried tears of fear and sadness, but Paul said something that we tried our best to stick to throughout the rest of my pregnancy and into our baby’s first few months. He said, “This news is heavy. The day we deliver our baby and the months that follow leading up to his open-heart surgery will be hard. But we can decide when we pick up that weight to carry. We can pick it up now and carry it for months upon months in anticipation and fear or we can pick it up and carry it when we absolutely need to.” This perspective was something I tried to remind myself of in the following months. Would I choose to enjoy my pregnancy and enjoy the last few months as a family of three, or would I choose to dwell on the unhealth of our baby and worry anxiously until he had his surgery and was well? I wanted to do the former things and I did my best to stay in a place of peace leading up to his birth. 

 

Truett’s name was one we had chosen even before finding out about his heart condition. We really liked the name because it reminded us of the word True/Truth, and we felt from the Lord that our baby would be one who stood firm for the truth of God’s word amid a confused and broken world. Some verses that I felt related to his name and ones that I started praying over him during my pregnancy were in Philippians 4:8-9 which say, “Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.” I read these verses many times throughout my pregnancy and prayed that our child would remember and think on things that were true and honorable and pure. After finding out about Truett’s heart condition, I felt the Lord draw my heart deeper into learning how to train my mind to think on things that were true even when my mind wanted to wander to fearful and anxious thoughts. He also drew my attention to the verses directly proceeding Truett’s life verses which spoke directly to my desire to stay peaceful and prayerful in this season of trial: “Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” These verses reminded me that I could actually still rejoice and have joy even with the heaviness of the news that my baby was sick. I didn't have to live in a state of sadness or grief but could rejoice in the Lord always and give my worries to God. His peace truly would guard my heart and mind. 

The following months were filled with many trips back and forth to Philly for ultrasounds, ECHOs, and prenatal appointments. We tried to view these trips as times to connect as a couple and prayerfully process all that was going on with our baby. Amidst the diagnosis of his heart defect, he was also diagnosed with Heterotaxy Syndrome which came with a myriad of other possible health difficulties. We were told he could have issues with his spleen, liver, intestines, and lungs, as well as the possibility that he could be sterile and not able to have children in the future. We were affirmed by the doctor that our feelings of overwhelm in hearing this news were valid, and we were told that even though I was already 24 weeks we still had the option to terminate the pregnancy because of these possible complications. After we quickly denied that we would consider terminating, we were told that he would need open heart surgery a few months after birth to repair the defect and that other testing would confirm if he had issues with other organs or not. 

 

On November 12^th, we relocated our family to the Philadelphia Ronald McDonald House to live there for a week leading up to Truett’s birth. It was such a fun week getting to spend time with Titus and enjoy city life. In the evening on November 18^th, we went in for my induction and thankfully we had a safe and peaceful birth, and Truett was born around 6:30pm on November 19^th. I got to hold him skin to skin for a few seconds and then he was handed through a window to the room next door to be evaluated. I remember being so thankful he was here and that the birth went well, while also grieving my empty arms and missing those fresh newborn snuggles. 

 

The next two weeks were spent with Truett in the cardiac ICU and step-down unit as he underwent tests to evaluate his heart and other organs, as well as his swallowing ability. Thankfully everything came back good, but Truett had a few episodes of low oxygen levels which led the team to decide he would need a pulmonary banding surgery before we went home. We were discouraged because we weren’t expecting him to need a surgery right away. We had already been in the hospital two weeks and knew a surgery meant we’d be in there longer, but we trusted the team and the Lord knew best not to send us home too early. I remember one day walking to CHOP from the Ronald McDonald House a few days after Truett was born and hearing in my spirit, “you’ll be home by Christmas.” I quickly brushed the voice away as there were still a few days until Thanksgiving, and I had in my head that I wanted to be home by Thanksgiving. But ultimately, that was the Lord’s voice gently preparing my heart for what was to come. 

 

On December 6^th, Truett had his first open heart surgery to place a band around his pulmonary artery to help restrict blood flow to his lungs as the doctors suspected too much blood flow to the lungs was causing his intermittent breathing issues. It was the hardest day and came with many tears. I was freshly postpartum and having to hand my two-week-old baby to strangers and trust they would take care of him and fix his heart. It was the most difficult thing I have ever done, but in the midst of it, God made His presence so tangible to us. 

 

Thankfully, Truett’s recovery was uneventful. He was off the ventilator within hours after surgery and continued to heal and eat well the next few days. We were discharged 6 days following surgery on December 12^th. We were so incredibly happy when we finally got to bring our baby home, exactly a month after we had left our house for Philly. It was a bit overwhelming bringing home a newborn that had already had heart surgery, but in the following days, weeks, and months, we got in a good grove, and we were so excited to be a family of 4!!

 

Truett spent the first 3 weeks of his life in the hospital but spent the next 5 months with us at home. During this time, we found out the best news that his genetic testing had come back negative for any cilia dysfunction that would cause lung or fertility issues later in life. Thank you, Jesus! Truett had cardiology appointments every 2-3 weeks in the following months to track his progress and evaluate when the time would be for his big repair surgery. In March, our cardiologist noted that the band around Truett’s pulmonary artery was getting tight as he was growing, and he would require a heart catheterization to try to loosen the band to increase blood flow to his lungs and the rest of his body. His oxygen saturations at this time were in the low to mid 80s which is crazy since they are usually around 100% in healthy people. Our little guy had no real symptoms with this low number, but we didn’t want to wait until he did so on March 29^th Truett had a heart cath at CHOP to loosen the band. It was a relatively short procedure, but again we had to do the dreaded pass off of our tiny baby to the nurse anesthesiologist in the white hallway near an elevator and wait and pray. Thankfully, everything went well, and they were able to slightly loosen the band to open the artery. This would buy him a few more months until he would need his full repair. 

 

We continued with cardiology follow-ups until the time finally came for us to schedule his big surgery—the one we had been told he would need almost 9 months prior in that room full of windows. We scheduled the date for May 15^th which was about two weeks away and geared up for what we thought would be another long stay at CHOP. Our cardiologist told us the recovery would be about a week, but to expect a little longer in case of any complications. One cool thing that got to happen right before we left for Philly is we got to have Truett dedicated to the Lord the Sunday right before we left—what timing! 

 

On May 14^th, we headed down to Philly, a drive we had done so many times before, and prepared for the big event! We had so many mixed feelings and emotions were running high. We were so happy the day had finally come, and we wouldn’t have to anticipate it anymore, but also not looking forward to having to hand our baby over once again. Both sets of our parents came and spent the day with us the day of Truett’s surgery. It was told to us that it would be about an 8-hour surgery where his heart would need to be stopped and he would be put on the bypass machine while they did the repair. All the grandparents got a chance to come back to Truett’s pre-op room and spend a few minutes with him before he went back for surgery. We could tangibly feel the many people praying for us that day as there was an incredible peace that filled both Paul and I as well as our parents. Even as we handed him over to the team, we felt a peace—he was sleeping in my arms and there were tears shed, but this was the most peace I had felt for any of the handoffs when I had always prepared for this one to be the most difficult. We waited and prayed and played card games and walked the halls of the hospital.

Every hour Truett’s nurse Shannon would call me and give us an update on how surgery was going. I was always checking my phone to see how long it would be until the next update. Again, I felt a supernatural peace over me that day and a trust that the Lord would care for my baby. After almost 10 hours away from Truett, we finally got the call around 7pm that he was settled in his cardiac ICU bed and we could come see him. He was all hooked up to the wires and tubes he had been the first time after his surgery at 2 weeks old, except this time, everything felt a little more spread out over his bigger 6-month-old body and it all felt familiar. Many times over the next few days, I felt almost numb to what I was seeing and experiencing because I had pictured it many times in my mind over the past 5 months. The handoff, seeing Truett on the ventilator, watching him start to wake up and take breaths on his own—it was all familiar not only because we had done it once before, but because I felt like I had done it a few times over in my head with the Lord before seeing it in real life. It almost felt as if I was living in the dream I had imagined for months. I think this was the Lord in His kindness preparing my momma’s heart for all I would see and experience. 

 

Truett was sedated and paralyzed with medications over the next 48 hours as he was on the ventilator. One of the hardest moments during this time was towards the end when they started to wean him off some of the sedation medications. As they would turn him in bed every few hours to prevent pressure sores, he would get really worked up and try to scream and cry over the ventilator. His face would turn a horrible purple color and his oxygen saturations dropped as low as 42%. They would give him a dose of pain medications and he would calm down again and be fine, but this was the most difficult thing we had to watch while Truett was recovering. It broke our hearts to see him so upset and scared. Thankfully after weaning some of these medications, Truett started to take breaths on his own and was ready to come off the ventilator! This was a huge win, and we were so thankful for this big step of forward progress!
 

 

Soon after, Truett got moved to the cardiac step-down unit and was placed in the same room we had been in for his first hospital stay as well as for his heart catheterization. Over the next few days, he continued to come off all medications and work towards full recovery. He was still on a little bit of oxygen on Monday morning when the doctors rounded, but otherwise he had come off all medications and was eating well. I remember thinking and hoping that we could be discharged by Friday that week because I was exhausted from not getting much sleep in the hospital room the night before. However, after just 6 days in the hospital, the doctors decided since Truett was progressing so well and his post-op ECHO looked good we could go home that day! Wow!! We were shocked and not expecting to go home that day, but so thankful and excited to finish the rest of his recovery at home. 

 

Leaving CHOP that afternoon, I could physically feel a weight fall off my shoulders as I realized we had made it! We made it through the surgery we had awaited for 9 months, and we were bringing our sweet baby home healthy and whole. Truly nothing short of a miracle. The next few days and weeks were spent taking things easy and giving Truett all the space and time he needed to fully recover, although he bounced back pretty quick! It almost felt as though we had floated through our time back at CHOP and something that felt so big and heavy for so many months was done and over with before we knew it. The only explanation I have for this is GOD. I hope we never stop thanking Him for the miracle of healing our sweet True. This journey with Truett has been the hardest thing we have ever experienced, yet we have seen God’s miraculous power, peace, and love on display in innumerous ways. 

 

After we got home and started processing all that happened, I started making a list of all the ways we had seen God work and provide for our needs during the time of Truett’s full repair surgery. There were very specific things I was worried or concerned about leading up to Truett’s surgery that I saw God take care of in ways beyond what I could ask or imagine. One of things on this list of praises is the many people who walked with us and were the prayer warriors behind us in this journey. We want to thank every person-- family, friends, and beyond that took time to pray for us and our sweet baby. We are humbled by the people we have in our corner and so thankful for the power of prayer.

 

From the time we found out about Truett’s heart condition, I couldn’t help but believe that this was God’s plan to redeem and restore what was stolen 29 years ago. Although there were times when I feared our story could have the same ending, I couldn’t come up with any other explanation for why we would have to walk through this similar journey that my parents did, at the same hospital that my sister passed away in, other than the Lord’s desire to redeem and restore all things. Although Truett’s life could never bring back my sister’s, I believe there was something broken off in our generational line because of his healing and testimony. It felt like we were walking into a spiritual battle the day we walked into CHOP for Truett’s surgery because of the generational history that place held, but we walked out with a cry of victory because of the healing power of the blood of Jesus! What a testimony of God’s goodness. By His wounds Truett was healed! 

   

Truett’s life is an incredible gift. His life has taught us how to lean on God and trust Him even when our fears seem overwhelming and the heaviness seemed too much to bear. What the enemy meant for evil in his life and ours, God meant for good. I can’t wait for Truett to read this someday, and I pray the scar on his chest will be a reminder to him that his life is a testimony of the power of God to save, heal, and deliver. We believe he will carry a sacred ability to proclaim the truth of who Jesus is because of his journey through sickness. We thank the Lord that Truett’s life was spared, and we share this testimony to encourage others in the truth that Jesus is a Healer and He seeks to restore all things. Although our family's story involves pain, loss, and illness, we can see that it is truly lined and knitted with the very fingerprints of God. He saw the whole story even 29 years ago and knew one day there would be redemption and healing. He saw my parent's grief and pain and knew He could use even their loss for good in their lives and to draw them to Himself. We pray Truett's story will remind you of your own story of healing and redemption and awaken you to God’s ability to do immeasurably more than you could ask or imagine because of the power that is at work within you.

 

Psalm 78

⁴ We will not hide them from their children,
    but tell to the coming generation
the glorious deeds of the Lord, and his might,
    and the wonders that he has done.

⁵ He established a testimony in Jacob

  and appointed a law in Israel,

which he commanded our fathers

 to teach to their children,

⁶ that the next generation might know them,

  the children yet unborn,

and arise and tell them to their children,

⁷     so that they should set their hope in God

and not forget the works of God,

  but keep his commandments;