Bringing Baby Home

One year ago today I brought my baby home for the first time. It was a blissfully happy day that I had dreamed of for many months. There were moments when I doubted that it would ever happen, but it finally came. Doctors came in to do final scans, and nurses trained us on administering medications and caring for him ourselves at home. It was the start of a new life, a more normal life that didn’t involve spending 10-12 hours in the NICU or Cardiac Intensive Care Unit everyday. What I didn’t anticipate was the fear that overcame me and threatened to steal my joy.

For 3 months, nurses cared for my son. For 3 months, he was hooked up to electronic monitors that measured his breathing, heart rate and oxygen levels. All of a sudden it was all up to us and it was terrifying. We had learned to rely on those annoying alarms to let us know if something wasn’t right with him and now we had to figure it out ourselves. My son still had an “unfixed” heart condition. What if something were to happen at home and I couldn’t handle it? I was even afraid of driving with him in the car!

Friends and family thought that our ordeal was finally over with our son coming home, only it wasn’t. It was a transition that took many months mentally, emotionally and even physically. For the first few days I did not sleep a wink! I stared at him all night long making sure that he was breathing. In the hospital he was used to having blankets and other accessories to keep him feeling cosy in his crib, but we could not use these at home due to the fear of SIDS. He seemed to feel lost in this big crib and spent most of the time sleeping in my arms, where I could keep a very close watch on him. We were warned that we should not let him get too worked up crying because of his heart condition, so I ran to him as soon as he stirred and before a crying sound could even escape his lips. In the midst of it all I was pumping and hoping that I could continue to provide this vital nutrition for my baby.

Needless to say I was exhausted. After a few weeks I stopped pumping as I just couldn’t keep up. My supply was drying up more and more and I felt emotionally drained from the guilt. I made the decision that it was best for both of us to stop. I still wish that I could have continued for a few months more. Desperate for sleep, we eventually we bought a monitor that clipped onto the baby’s diaper. It alarmed if he ever stopped breathing. This gave me the peace of mind I needed to sleep for a few hours while he also rested in his bouncer or Rock and Play.

I remember the night before Thanksgiving I was so exhausted that I forgot if I had given my son his medication or not. This was an extremely potent medication and the dose had to be exact. It was imperative that I didn’t under dose or over dose him! Luckily we have an amazing pediatric cardiologist who answered my text message at 9PM on a holiday weekend and told me what to do! Between the medications, my son’s severe reflux which caused him to spit up all day long, the anxiety and the doctor appointments, I felt like I was drowning.

Little by little my son got better and stronger and I so did I. I learned to cope! After a few months he was off medications and his reflux improved. Since the breathing alarm never went off I realized that I could relax and didn’t need to worry as much as I was. We no longer use it, but even today I still check his breathing a few times a night just to be safe!

My biggest memory of a year ago today is seeing my little guy happy in his car seat going home! Happy tears rolled down my cheeks. I was so excited to begin our life together at home as a family, as scary as it was. The truth is, happy tears often roll down my cheeks, even today! My son’s resilience, strength and zeal for life are inspiring at the least and the fuel that keeps me going, even when things get rough. He has taught me so much more than I could ever teach him. Life is precious and he is the poster boy for “preciousness.”