When we were finally able to bring our boy home, we were excited & a bit nervous all at once. Up until this point he had a crew of medical professionals monitoring Joshua's every move. Now it was our turn. We felt relatively confident about taking him home because we spent every day & night by his side. We were very familiar with everything. He was sent home on oxygen, a feeding tube & 8 medications to be given around the clock. We were trained on how to put in his NG tube, how to administer the medications, as well as the ins & outs of oxygen tanks etc.
As soon as we got home we felt a huge sense of relief. It was so good to show our baby that the world had more to offer. Although we were under "house arrest" as it was cold and flu season. We were warned that if Joshua caught RSV (a respiratory virus...basically a cold) it could be deadly. We weren't willing to risk a cold killing him after all he had been through, so we were diligent in keeping ourselves isolated.
Being home also meant that we now became the nurses; tube feeding every 3 hours, giving 16 different doses of medicine at all hours & of course regular baby stuff too. We had to be very organized & had charts for all of his medications, feeding & spit-ups. Thinking back it was tiring, but after the hospital stay that never seemed to end, we were up for the challenge. Really it wasn't that bad at all. I was also pumping every few hours, which wasn't easy, but very worth it. And I think the hardest part was his reflux which meant he'd spit-up after almost every feed. This was hard because it was clearly painful to him & happened very regularly.
During this time our job was basically to keep Josh healthy & put as much weight on him as possible in preparation for his next surgery. We were successful on both accounts, he never got sick, no medical scares & he was so chubby!
I look back at this time and have many fond memories. Joshua's health was very delicate, but we were able to really find joy in our time at home with him. He was very happy & easy going, it's just his nature.