Momma Bear: A Journey Through Pain, Love, and Strength 5846

My heart is shattered into a million pieces as I face the reality that my sweet Lane won’t be able to celebrate his birthday with us this Saturday. Though we will still be there, and we hope you all can come to support our family, the weight of this loss is hard to bear.

Lane is back in cardiac ICU, fighting for his life after being diagnosed with respiratory failure from RSV and pneumonia. He’s sedated and temporarily paralyzed, but his vital signs are stable. I wish I could put into words how painful it is to go from a Tuesday afternoon at home—breathing normal air, doing physical therapy, laughing and smiling—to suddenly watching my baby intubated in trauma by 3 p.m. This is our life with Lane.

When he catches a virus, his compromised heart can only take so much before it crashes, needing intervention. Yesterday, his ER visit was one of the scariest. It was so sudden, and Lane wasn’t responding to oxygen support or CPAP. But there’s some hope now. The intubation period should be brief, as the vent was doing 70% of the work yesterday, and today we’ve weaned it down to 50%, meaning Lane is starting to breathe on his own. Once the paralytic wears off, we’ll try reducing the vent support further to see how he tolerates it.

For now, we ask that you keep us in your thoughts and prayers. I don’t understand why Lane has to endure this. I’m devastated, angry, exhausted, and confused. But I hold onto the belief that one day it will all make sense. Lane is an incredible warrior. I hope his story can bring inspiration to anyone in need of it . I am Momma Bear .

Open heart surgery is a strange headspace to navigate. You’re so ready, but at the same time, you’re so scared. Have I been through this before? Yes. Twice, actually: a thoracotomy at 3 weeks old (which isn’t technically “open heart,” but still major heart surgery), and an open heart at 5 months old. Along with two VP shunts, which feel like nothing compared to open heart surgery.

Over 90% of babies under the age of 1 survive open heart surgery, and that percentage increases as they get older. Lane is now 15 months old. While these statistics are comforting, I won’t dive into them because I don’t need to. I trust the hands my baby is in. It’s an unimaginable level of trust. If you don’t have that trust, you’re not at the right place for surgery.

What scares me isn’t the surgery itself—it’s the 72 hours post-op. The first three days after surgery are so hard. To see your lifeless, helpless, innocent angel lying on a bed, dependent on machines to keep him alive, is indescribable. Lane has multiple IV sites, a PIC line, an arterial line, a pacemaker, sternotomy wires sticking out of his chest, and chest tubes draining fluids. A machine is breathing for him. He is at the mercy of God and the medical staff around him.

I can’t put this into words. “Grueling” is the only word that comes to mind, but it doesn’t even begin to cover it. Every fiber of my soul hurts. Personally, I cry and vomit. It’s not because I have a weak stomach (I don’t), it’s because my heart hurts so much that it manifests physically. I miss my other kids at home. I miss normal life. And I would do anything in the world to take away Lane’s pain, but I can’t. I feel completely helpless.

I lean heavily on those close to me. Without them, I wouldn’t survive. And Lane needs me. After all, he can’t even breathe on his own.

The days following open heart surgery are all about stabilizing the patient. You “chase” heart rates and blood pressures in a cat-and-mouse game with the most wonderful nurses and specialists. Once stabilized, you begin to wean off the heavy sedation and pain medications.

Do you know how hard it is to wean off a fentanyl drip? We’ve done it twice, and it’s no easy feat. You hear stories all the time about people addicted to fentanyl, but then you watch your baby on a constant drip through one of his multiple IV sites. He doesn’t have a choice like recreational drug users do. He has to have the addictive drug to manage his physical pain.

The nurses who care for babies after open heart surgery in those first three days are truly incredible. Their dedication and care are what make recovery possible. It’s a collective, team effort that forever bonds you to those who kept your child alive during the most critical hours.

I am so very scared, but I am also so very ready. Lane has been sick for so long, and it’s time to fix him. I will shut down for days or even weeks, but there are moments when I just can’t stop talking. Ask any member of our medical team—anyone who works with me as Lane’s advocate knows I never shut up. That’s my job. I am “Momma Bear” and I’m ready for this.

I can’t take away Lane’s pain, but I can be his voice every step of the way. That is a responsibility I will carry with me for as long as I live.