June 19th: Caden (our 5-year-old) and I were having our regularly scheduled Friday sleepover. I was in the newborn fog but we made popcorn, had candy, and were snuggled up so I could try to allow him to feel the chaos as little as possible. I went to nurse Maverick at 10 pm but he wouldn’t latch. For his 7 pm feeding, he didn’t nurse well either. His cry was different. Mike and C were laughing on the couch. I panicked. I yelled (and I’m not a yeller), “something is wrong!” He felt cold but was sweating. I told Mike to grab the thermometer. His temperature was 94. Mike scooped him up and ran to the car to drive to what would be the first hospital of three. No car seat. No thinking. Just pure Dad instinct to save his son. I had to wait for my Mom and sister to arrive to watch our other sweet babies. The 10 minutes felt like an eternity.
I was still not supposed to drive (8 days post-c-section), so my sister drove me to the hospital. I ran into the ER with the empty car seat and the security guard read the panic on my face. “Are you with that Dad and Baby?” He asked me. I told him yes and he told me he would check if they would allow both parents back (thanks COVID). He opened the door but I didn’t wait I ran right by him. This first hospital was HORRIBLE. And that’s all I’ll say about that.
Soon the ambulance arrived to transfer us to Stony Brook. They worked quickly. They tested his glucose. Undetectable. After an emergency dose of D10, it only went up to 40. Another dose. 55. They could barely stabilize him at this point and for that reason, I had to ride in the front of the ambulance instead of the back with my brand new baby.
The 10-minute drive felt like 4 hours and when we arrived the ambulance driver (real gentleman thank you sir) grabbed a wheelchair even though I wanted to run. He wheeled me around but no Maverick. “Where’s my baby?!” I saw them running down the hallway without us. He is too unstable they are rushing him to the ER instead of up to the PICU. The PICU team came down and was waiting on us. It was literally a nightmare.
At this point, they wheeled me out of the room and I was watching from the hallway. I felt like I was underwater. It was like a trauma alert. A scene I’ve seen a million times before. But this time it was MY child, MY world crashing down. There was stuff all over the floor. There was blood. “Mom we have to intubate, you have a very sick baby here!” I was too paralyzed to speak but I’ll never forget those words. Just save my baby, I thought.
They cut off his blue striped onesie and handed it to me. They were starting IVs in his scalp (and everywhere else). I felt someone’s hands on my shoulders. Mike. They let him in. This should have been a relief, but instead, I knew they only let him back because we could lose our son. They took us up to pediatric intensive care and they were struggling to keep him alive. Thank GOD the PICU chief attending was on and she realized right away it was a cardiac problem. They called in the pediatric cardiologist who did an echo and he found that Maverick had a severe aortic coarctation, bicuspid aortic valve, and a bovine aortic arch. The Critical Coarctation was stopping the blood flow to his entire body from his chest down including his organs. He was in complete cardiac shock.
Mike and I were holding hands taking turns lifting each other up. Marrying him was the best decision I’ve made in my entire life. I turned around after pumping and it was light outside. I asked Mike why it was so bright and he told me it was 7 am. The sun came up before we even knew it. They told us we were being sent in another ambulance to NY Presbyterian Columbia because he needed open-heart surgery to save his life and that is just what they did.
The rest is a story for another time. Moms and Dads: TRUST your gut! We could have just soothed him to bed. He became so lethargic that we would have just thought he was sleeping. Even though we didn’t do that, the thought haunts me. The statistics for CHD are 1 in 100. Our Mavy might be “1” to the world, but to us, he is a WARRIOR. We do not see the scar and the struggle when we look at our brand new miracle. We see a sweet boy who is finally putting on some weight and works endlessly to look around at his siblings. We LOVE you Mighty Mav!