Stanley's Strength

Written by Kate S

It was a normal check up. A routine. Stanley was as lively as ever, fussing all the way to the doctor's office, and in the waiting room. I took him out of his car seat, because even at 4 months old, Stanley knew exactly what he did and did not want.

We get called in. It's the same nurse as always. She warmly greets us and starts the normal questions; how is he eating, how is he sleeping, let's get a height and weight on him, any concerns for the doctor? This time I did have a concern. Stanley wasn't gaining much weight. His ribs were poking, but all I ever did was nurse him. Day and night, every 2 hours like clockwork. And he had this rasping cough when he would lay on his back. Like he couldn't breathe. I thought something might have been wrong with his lungs. The nurse took note of my concerns and put Stanley on the scale. 12.5lbs. That couldn't be right. He was 4 months old and eating non stop, he should have doubled his weight by now, closer to 14lbs, not 12. The pediatrician came in and checked Stanley over. Of course he didn't make that easy because he is a natural wiggle worm. She said, "his lungs sound fine, but I hear a murmur in his heart that I don't remember hearing last time." My stomach dropped. A murmur? What does that even mean? She scheduled us to come back the following week to check again. Sure enough, Stanley's weight dropped 2oz, and that murmur was still there, loud and clear. We were sent for blood work that afternoon to ensure he wasn't anemic. We were scheduled for a cardiology appointment the following week.

The night before Stanley's first cardiology appointment, I voiced to my husband my concerns about the extreme; open heart surgery. He scoffed, stating that there's no way our baby was going to need open heart surgery. This is probably nothing and the doctors are just being dramatic. He even suggested we switch pediatricians to get a second opinion. But there was no need. The next days' echocardiogram displayed everything we needed to know; Stanley had a large perimembraneous ventricular septal defect in his heart. He was going to need open heart surgery. The rasping he was experiencing was due to fluid build up around his lungs. He was started on medications that day to relieve the fluid.

I stood in that room as the cardiologist gave me the news, holding my sleeping baby in my arms, while my 11 year old son sat in the chair behind me, hands folded, listening like an adult. The tears came but didn't fall, I was in utter shock.

The next steps happened rapidly but it felt like a lifetime. Rhode island doesn't have a cardio surgeon, but Boston does. It was a series of phone calls; background information, medications, various appointments pre-surgery and what to expect the day of and during the recovery process. All the while I'm breastfeeding every hour most days, while also trying to give my bottle adverse baby fortified breast milk in a bottle. Stanley just screamed the entire time. Exhausted. Frustrated. It took everything not to cry myself to sleep each night.

By the second week after our world turned up side down, we were admitted to the hospital to have an NG tube placed. It was pre and post weight checks every 2 hours for an entire week's stay. Stanley ripped the tube out twice, and screamed hysterically as the nurses placed it again. It was meetings with speech therapists, dieticians, nurses, doctors, and other members of his cardiology team. We were exhausted. Everyone. My husband and other son included. But only one more week until surgery. We just had to keep going.

We took a trip up for the pre-op visit. Stanley's first time under anesthesia for the echocardiogram. I was a wreck. But my boy just kept smiling, giggling, and bopping around like he didn't have a care in the world. And he didn't, because he shouldn't. We spent half the day waiting, the other half rushing Stanley around the hospital to his various appointments.

Then the day for surgery came. We arrived at the hospital an hour before Stanley's scheduled surgery. The first ones in the waiting room. I read him his favorite Monster Truck book, and played with him on the chair until we were called back. We met with the anesthesiologist. We were advised to have somewhere else to go in the event seeing our son post surgery was too much. I'm a stubborn mama, I wasn't going anywhere. The anesthesiologist walked us through what to expect again. I nodded but I'm not sure I even heard him. I just felt the weight of my baby in my arms, sent a prayer to anyone who would listen, and held my breath. Then they took him.

My brave boy looked at me over the doctors shoulder, confusion on his face, as if he wasn't sure he wanted to cry or not. And when Stanley was out of sight, I broke. I finally broke.

5 hours the surgery took. I counted every minute. We were given updates every hour and a half or so. I ignored anyone and everyone else who tried to contact me. I only answered the phone for the hospital with updates. I only left the waiting room to eat and use the bathroom. My husband patiently waited with me. Both of us anxious and tight as knots. When we got the update that the surgery was complete and to head to the ICU, I felt like I could breathe again.

We headed up and waited another hour before we could see our boy. But when we were finally brought back, I was holding my breath again.

We walked in the door, and I spotted my baby in a hospital crib, hooked up to various monitors, a tube down his throat, IV's everywhere, and I cried on the inside. But I know my boy. Stanley had a hole in his heart and kept up with other babies like it was cake, now that the repair was completed, he was going to blow everyone out of the water. That thought comforted me as I entered the room.

I compiled a playlist of all his favorite songs and started to play them and sing to him to try to wake him up. The nurses encouraged me. It took a little longer than expected, but he woke up and immediately ripped the oxygen out of his nose. I looked at the nurse and chuckled, "I guess he didn't want that." She placed it back, and Stanley ripped it out again. By try #5, the nurse opted to leave the oxygen out of his nose since he was holding steady at 98%.

The next day, Stanley was trying to rip off his toe monitor. The nurses replaced it every few hours or so since he somehow managed to keep kicking it off.

By day #3 I was advocating to remove the chest tube. I could tell it was hurting him by now, all Stanley did was cry. I don't think anyone in the hospital got sleep those 24 hours. Once the chest tube was removed by day #4, Stanley was ripping off all of his monitoring equipment. The sticky chest monitors, gone. The blood pressure cuff, gone. The oxygen monitor, gone. He was ready to get out of there. But we were kept for a few mor days for monitoring.

The nurses were amazed at his liveliness. I felt like a parrot repeating how he has always been a lively baby. As strong as an ox. Solid as granite. Stubborn, like his mama.

We left that hospital and didn't look back. Stanley will continue to have his heart monitored and his weight checked. He is currently 7 months old and trying to walk. What held me together in the moments I wanted to fall apart was my son's strength. Stanley faced every appointment with a smile. I hid my fear behind that smile. It kept me going, it kept my feet moving, it kept me confident in my son's resilience.

This story is ongoing, and will be for Stanley's entire life. Thankfully, we have a wonderful pediatrician (yes we kept her) and a phenomenal cardiology team. As of today, Stanley will live a normal life, full of wild dreams and endless possibilities.