The walls were yellow. So were the floors, however the floors had baby blue stars and moons. I could tell you the exact amount of stars and moons if you asked me because I made the walk to the NICU multiple times a day. Those are the things you start to notice. The walls, floors, ceiling tiles, the annoying drips of the sinks, the beeps, buzzes, alarms. It all becomes way to familiar when you’re a NICU parent.
The first time I got to actually hold my baby was nearly 10 hours after I had given birth. I begged and cried to be taken down there. There he was, in POD 4, bed 396. He had an IV which just made me cry even harder. There were multiple wires and I wasn’t allowed to nurse him or feed him because we didn’t know the extent of his condition. We started to learn what our routine would be as NICU parents. Vital checks every three hours that included temperature, diaper change, blood pressure and heart rate. We learned about the Ronald McDonald family room, where we could take a mental health break, eat and recharge our batteries and then walk the yellow halls again.
You never want your baby to be a NICU baby, and trust me I know we could have had it much worse. Our surrounding neighbor babies barely weighed 2 pounds, and our boy was nearly 9. But he had a pesky heart problem and with that we became the 1 in 100. We had a CHD baby. A seemingly “invisible” illness ailed him. His official diagnosis after an angiogram and CT at birth (which they initially messed up and my poor kid went nearly 48 hours from birth without eating) was a vascular ring around his esophagus and a Kommerils Diverticulim. The plan was to eat, sleep, repeat for 10 days and then we would do surgery. So that’s what we did. We spent our lives in that NICU, only taking little breaks for stretches of sleep and to force ourselves to eat.
Our wonderful families visited, major shoutout to my father in law and my father who spent extended time in Vegas with us.
We had bumps in that 10 days. His oxygen would dip too low and he didn’t always handle his feeds well. It was expected because he had something restricting his esophagus. At one point they added another IV as a “just in case”. It was a roller coaster. You walk the halls to get to the NICU everyday and you hope and pray there wasn’t much change overnight. Typically in my middle of the night pumping sessions, I would sneak out of the room at the Ronald McDonald house and call just to check in. The day before surgery everything got way to real. I questioned whether or not we had made the right decision to have surgery and had massive panic attacks. I couldn’t breathe and I was scared to hold my baby in fear of becoming more attached. That may sound horrible, but it’s so real. I baked this tiny human for 38 weeks and 4 days… I didn’t want anything to happen.
When day 10 arrived, we woke up bright and early. We walked those yellow halls with the blue moons and stars. What we walked into was an absolute nightmare. We had been told they would have to have two IV’s, an arterial line and a central line. Unfortunately our little mister doesn’t give up veins very easy. We have now discovered that is because his left subclavian artery is blocked.. so his left arm can’t be poked. We walked into POD 4 to hear piercing screams that I knew were coming from my kiddo. He had the best lungs on the block. They were attempting to start an IV on his head and I fell apart. My heart sank and then sank even further when I found out this was already the 5th attempt at getting IV number two in. I went to pump (gotta stick to that three hour schedule) and came back and they were still trying. My husband is the hero that could manage to standby and watch/comfort. I went in the corner and cried. I contacted my dear friend who reminded me this would all be over soon. Eventually (after 15+ attempts) they gave up and decided to wait until he was sedated (why they didn’t do that in the beginning, who knows).
Then you wait. You jump every time the phone rings wondering if it’s your babies turn to go to the OR. Every time someone new walked up, your heart dropped. Eventually the techs came to take us down and we said goodbye to the NICU we had become so familiar with. After surgery we were headed to the PICU. We went down to the OR recovery/waiting area and spoke with all the doctors. Our surgeon, multiple nurses, anesthesiologist and a whole host of other people who ensured us that everything would be okay. My hands shook as a signed documents stating risk factors that included death for our 10 day old baby. How do you put that kind of trust in someone? Your faith is truly tested at those moments in life.
They took our sweet Vincent back and escorted us to the waiting area. We found a little secluded spot and I fell apart. Into a million pieces. I sobbed until I nearly vomited. I couldn’t breathe and just begged god to please be with my baby. My husband held me tight and prayed with me. I again questioned if it was the right decision (which was comical considering there wasn’t much else I could do at that point). Then my Dad showed up with pretzels. Pretzels you guys. That is what I found comforting. I don’t know why, maybe it was the distraction. I looked through the hundreds of photos we’d taken over the last ten days. I never let go of my husband. We played with silly snapchat filters and I just observed my surroundings. Multiple other families feeling the same fears I was, holding onto their own personal faith that everything would be fine.
As the time ticked by, I became scared again. The other families had received great news and left to see their loved ones in recovery, and we were over the expected time for surgery. Eventually our nurse came out and let us know they were closing up and our doctor would be out to speak with us soon. Once he came out he took us into a small room and explained every detail of his surgery. What he saw, what he fixed, what he didn’t. I’ve never felt more grateful to someone in my life. I wanted to hug him and never stop hugging him. All the fears I’d had from the day I found out my baby had a CHD had been quietly tucked away for a few minutes of peace.
Did you know approximately 40,000 babies are born each year in the United States with a CHD? It is the most common birth defect. Parents with a CHD baby, you’re not alone. I’ve walked those same halls you have. I’ve been in the darkest place imaginable while fighting for your baby to have the best care possible. If you ever feel alone and scared, please reach out. I’m the mother of a CHD warrior and always will be. They’re never “cured”, but we keep fighting the good fight. Happy Heart Day! ❤️