A Day in the Life of a CHD Mom

When Time Stands Still

Some moments feel as if time stands still, and the anxiousness and pain will never end. I found myself in one of those moments less than 24 hours after my 4-year-old's first open-heart surgery. The nurse had told me they wanted to get my son up and walking. Getting the body moving after being on the bypass machine helps wake up the organs that were shut down during that time. I was mesmerized of the bravery and strength as I watched my little guy walk the entire PICU floor as nurses and staff cheered him on, but I was quickly snapped out of this euphoria. Just when I thought I could breathe again, he doubled over in pain.

The Struggle with Pain

Right before we made it to his room, my son doubled over in pain. He was crying and absolutely would NOT move. I swooped him up from underneath his legs (we were not allowed to pick him up from under the arms), told the nurse he’s done, and carried him back to his room.

The pain went on for hours. He cried out in pain and pleaded with me to take him home. Soon he was crying and wanting to go to the bathroom. They put him on a child size portable toilet but he hadn’t eaten anything for 2 days so he couldn’t go. The nurse explained the walking woke up his intestines. Between that and the anesthesia still in his system, it was causing gas pain from the surgery. She further explained that often heart patients tell her that the gas pains hurt worse than the surgery.

My son continued to plead with me to take him home. He didn't understand what was happening to his tiny body. All he knew was that he was in pain, and he felt like he needed to use the restroom. I felt helpless even being able to help my son use the bathroom because each time it meant getting the nurses to help hold the wound drain tube, the IV's, and the countless cords to the monitors. Then I'd have to lift him (from underneath his legs) while trying to give my child his personal dignity that he already felt was being taken from him.

After hours of watching my child in pain, I was beginning to lose my patience and felt so incredibly helpless. Watching my son suffer was taking its toll on me. I was painfully reminded of what God must have felt as he watched His son beaten, tortured, and hung on the cross in the most unimaginable pain for a human. The strength it had taken not to take vengeance on those who participated in the act reminded me of God's amazing grace. I continued to seek God in prayer for the nurses to find a resolution and help end my child's suffering.

The pain my son experienced felt unbearable. Hours went by, and despite the pain medication the nurses provided, it was apparent that these were only temporary solutions—a mere band-aid. I could see the suffering in his face, and with each passing minute, I felt myself losing patience and hope. As a parent, feeling helpless in the face of your child's suffering is one of the most agonizing experiences one can endure. Watching him cry, looking to me for comfort, made me wish I could somehow take away his pain and carry it myself.

The Power of Support

Just when I was on the brink of tears, we had an unexpected visitor… my sister stopped in to see Bryce. I was so relieved to see a familiar face. It was like I could finally let out the breath I had unintentionally been holding. Having a family member to lean on for support helped me to relax. Together, we took turns providing comfort and reassuring words to help my son relax and remain calm. I realized that when I'm calm, it is so much easier to convince my child that it will be okay. If he could see the anguish on my face and hear the worry in my voice, my words of comfort are meaningless to him. The presence of my sister helped me gather my emotions so I could be the advocate my child needed in his time of pain.

Below is an actual excerpt from Chapter 22 "Leaving it to God" from my book, "Prayerful Warrior Mom":

"Rob and Reyna came to see Bryce around 5:30 that evening. The nurse wanted to take Bryce for another walk. I asked Rob to go with him this time. I told him, "I can’t take it if he cries out in pain the way he did earlier.”

So Rob and Reyna took Bryce for a walk with the nurse. He cried and clung to Rob the entire way around. I could hear Bryce crying as he moved closer to the room. I stood in the doorway waiting as he made it all the way around this time, but he was not happy about it. Bryce’s reward for walking the entire floor was all the popsicles he wanted. In fact, he ate so many popsicles they had to borrow some from another department because Bryce had eaten all the popsicles on the PICU floor!

The rest of the evening went fairly well, and Bryce was in good spirits and not really complaining of any pain. Later into the night, the pains started again. It was nearly midnight, and most of the kids on the floor were sleeping. Bryce was crying out in pain. I pressed the call button for his night nurse and told her, “His gas pains are back.”

She helped get Bryce back on the port-a-potty and left to get something. It felt like she was gone forever. Bryce was sobbing and pleading for me to take him home. “Please!” he cried. “I just want to go home. I love to poop at home.”

As we waited, I was doing my best to calm and console him. “I know, Bryce. I know you are hurting. She is coming back with something to help you.”

He continued to cry out several more times, “Please! I wish she would hurry up!”

I tried to console him as we waited. “She’s coming, honey. She went to get you some medicine to help stop the pain. You’re being so strong, Bryce.”

It was heart-wrenching, and I tried so hard to stay calm and keep myself from crying. Finally, the nurse came back. She gave him Tramadol, but she also gave him MiraLAX to help him pass the gas. After a little while, the pain meds kicked in, and we got Bryce to lie back down to sleep.

Four hours later, around four in the morning, I woke to the sounds of Bryce’s laughter. Through exhausted eyes, I could see the silhouette of the nurse sitting beside him, and they were both giggling. Then I heard the loudest fart come from Bryce and realized what they had been giggling about.

I was so grateful to hear my son’s laughter amid so much pain and recovery. Finally! The gas bubbles were starting to move, and he was finally getting some relief! Why did we not give him the MiraLAX earlier? Thank God for sending us this night nurse to stop Bryce’s agony."

This moment could hardly be described in words—it was as if the weight of the world had lifted. Our collective prayers for relief were answered, and hope began to fill my heart and remind me God was with us.

Reflecting on that day now, I realize how crucial it is to have a support system in place during tough times. Even in my greatest moments of despair, the simple act of someone being there with me made all the difference. It is a reminder that our strength doesn’t always come from within; sometimes, it comes from the people we love standing by our side.

In the end, every struggle, every tear, and every moment of helplessness was overshadowed by the understanding that we will get through this. My son is a warrior, and as a parent, I’ll continue to be his fiercest advocate. Life may throw challenges our way, but with love, support, and remaining anchored in our faith, we will find the strength to face them head-on.

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