Tuesday, April 12, 2011

Our New Normal...

So Mark and I survived our first night getting Nathan to bed and connected to his feeding pump. Just to give you an idea, here is what our new bedtime ritual will look like for now.
Nathan's total daily amount of EleCare per day is 32oz. He only consumed 15oz. by mouth throughout the day, so that meant we needed to prepare 17oz. for him tonight to run from 8pm -6am. Once the formula is mixed, it can only be hung in room temperature for 4 hours at a time, that being said we can only hang 200ml at a time. (It takes 4 hours to give him 200ml at 50ml/hour.) Yes, we will be waking up every four hours to add fresh formula to the pump. We took Nathan upstairs and Mark primed the pump while I changed Nathan's diaper, only to realize it had leaked onto his onesie. So I had to untape the feeding tube from his onesie and clean him up before putting on his jammies and re-taping the feeding tube to his jammies on his back. Apparently, once you prime the pump you only have a certain very short time frame before the pump begins yelling, okay, beeping loudly at you and telling you to hit "run", and I was too slow for that due to being overly mindful of Nathan's NG tube. Next, we sit Nathan up on the changing table and listen to his stomach with a stethoscope while putting a small amount of air in the tube to verify the NG tube placement. It's not as easy as it sounds when Nathan is busy trying to fly like Super Man off of the table. :o) Thankfully, I remembered to crimp the tube before uncapping it to attach the syringe, gastric juices on fresh jammies would have made me cry. Finally, we are ready to hook Nathan up to the pump. Success! Well, I must add that I put an additional minimum of a half roll of tape to his nose and cheek to make sure that tube wouldn't be going anywhere tonight. I may have even taped his left eye shut. :o) It sounds better reading it on here, but honestly, it was about a 45 minute not so smooth endeavor. I am sure we will be pros at it before we know it, and the every 4 hour wake up call will become routine as well.
The home health nurse that came out today was wonderful! She will be back out Thursday morning to weigh Nathan to make sure he is gaining weight. After that she will just come once a week, or as needed if we need help re-inserting Nathan's NG tube. She said that Nathan should be gaining one half to one ounce per day.

I'm sure I've got much more to share, but I am zonked and need to get some sleep. After all, 11pm will come quickly when Nathan's pump is due for it's refill. :o)


  1. I am so impressed with how well you are handling all this! Love, love, love!!!

  2. Me too...... I hope you are able to get a decent sleep. Every day will probably seem a little easier. I hope so.... You are a hero!