October 30, 2009
There’s James…all tucked into his bed in his room at home. After 2 long months in the NICU, he finally came home on October 29th, 2009. I’ve heard enough stories that to know that new parents go through an adjustment period when they bring home their healthy new baby. We don’t know what that adjustment period is like because we have never had the opportunity to bring home a healthy baby. Jackson passed away before he was born and James, well, he came home with things that most parents don’t have to deal with.
There was the feeding pump that is used to pump his food (breast milk, formula, or Pedialyte) through his g-tube and into his stomach. There was the pulse oximeter (pulse ox) that constantly monitors his heart rate and the oxygen levels in his blood. There was the suction machine that we use to clear the secretions from his nose, mouth and throat because he is unable to do it on his own. There was a sleep apnea monitor just in case he stopped breathing in the middle of the night. There were oxygen tanks in case he needed a little boost like he did on several occasions in the hospital. And there were the prescription meds he was taking. “Are we sure we can handle this?” Well, we didn’t exactly have a choice, did we? Welcome to our new normal.
During the two months that James was in the NICU, we were there as often as we could be so we knew what his care was going to be like once we got him home. But there’s one big difference between the hospital and home. In the NICU there were nurses tending to him around the clock. Now that he’s home, it’s just Stacy and I. The two of us were responsible for little person with so many medical issues. Deep breaths. We got this! Welcome to our new normal.
When James was in the hospital, they had him on a schedule. He was getting fed every three hours. He was getting his meds at specific times. We continued this schedule at home. It was rough, but we managed to get through it. Actually, I think Stacy did most of the managing. You see, I am a heavy sleeper and can sleep through just about anything. Stacy, on the other hand, can wake up to the sound of a pin dropping on a tile floor. Alright, maybe not that bad, but she is a pretty light sleeper. James doesn’t cry, so we didn’t have to worry about him crying us…I mean Stacy… awake all night. Instead, we had the lovely sounds of his pulse ox and sleep apnea monitors beeping randomly throughout the night. Have you ever walked through a hospital and heard machines or monitors beeping as you passed by a patient’s room? Now imagine that beeping coming from your child’s room at all hours of the night. After two months in the NICU we kinda got used to a nurse rushing over to James if one of his alarms went off. We quickly realized that this isn’t the hospital. There are no nurses here. There was just me and Stacy taking turns to tend to James.
Welcome to our new normal.
