Getting Into a Routine
While having a heart baby is much different than having a healthy baby, a lot of things remain the same. The biggest is that you need to develop some sort of routine. We got pretty good at ours: meds in the morning, meds at mid-day, meds at night; filling the feed bag, mixing formula; appointments. The only thing we didn’t have down to a science was sleeping. By this stage, Grant was sleeping well, but Nolan was doing a terrible job of sleeping, and we just couldn’t have the twins in the same room because Nolan would wake up Grant and it would be horrible. The worst part is that I made it my job to take care of Nolan when he would fuss during the night, especially since my wife was home all day with multiple kids: it was the least I can do. That would leave me as a total zombie for work because I would only get a few hours of sporadic sleep. Sometimes I couldn’t stay up no matter how hard I tried: I remember one night where Nolan was fussing and I had gotten practically no sleep over 3 or 4 straight nights. I got out of bed, bent over him, and then just froze. It was like brain shut my body off and was like “Hey idiot…you need sleep!” I remember standing up and stumbling back to bed and telling my wife, “I am so sorry babe, I just can’t do this tonight.” Then I just crashed in the bed and didn’t hear a THING until the morning. How did we do it all? No idea…Grace of God.
Another important part of the routine is cleanliness. It is imperative that you try your best to keep the germs off your heart baby because they are so susceptible to illness…and even a cold can put your little one back in the hospital…it’s serious business. So how did we do this? Well for one we limited how often we went out with Nolan. For a long time we just went to the doctor and that’s it. If people came to visit, we insisted they used hand sanitizer before interacting with him. If they were sick, we politely asked them to stay home. And if people wanted to interact with Nolan, they needed to keep off his face. A few other important thing to remember is your work and school clothes. Everyone knows that daycares are breeding grounds for germs, so whenever our oldest came home from preschool, we made sure the first thing he did was change into clean clothes. Since I work in a healthcare environment, I could also potentially carry some nasties on my clothes, so I would also change when I got home from work.
Like I’ve said before: this was our new normal…and it will be yours too. You won’t have tons of parties, go on lots of baby vacations or have fun trips to the park. Early on you need to develop a good routine and learn everything you need to learn in order to make sure your child has the best chance to survive and thrive!