reuben’s adventure

Reuben is 8 months old today, and he had his first outing for fun.  We took him to Dumont (about 2 hours away) to see his great-Grandma and Grandpa Freese (the original Reuben). We knew we would only take him on social visits to an immediate family member who was unable to travel, because the risk of exposing him to something is just too great. No matter how careful we try to be, there’s just more risk when we’re out and about. We stopped at a gas station so I could go to the bathroom and when I came back to the car, I touched the top of his head before I remembered to use the hand sanitizer — who knows how many customers had touched the bathroom and store door handles that morning, or how many were sick — so I put hand sanitizer on the top of his head, too. He thought that was pretty weird:).

We had a nice visit and both Reuben and grandparents seemed to enjoy themselves. Great-Aunt Marge stopped by for a few minutes to say hello while her grandchildren were at recital practice.

He’s just not a normal little kid, though, in some ways. If anything is strange to him, he just won’t eat. We fed him 4 ounces of enriched food before we left at 8:30, and then he refused to nurse again until he finally took a nap at 2. He wouldn’t nurse again until we got home around 7. That is just not enough food to keep him going on a regular basis, so I think one of the real benefits of us staying at home is that Reuben is comfortable and in a routine and sure to get enough to eat.

Speaking of which, I need to go hang more food for him — it’s a little after 9 and he’s asleep, but we need to catch up on those missed calories. I’ll ask Eric to post some photos of the visit tomorrow.

Love,

Jonna, Eric, and Reuben

Well, I got to sleep through the night for the first time in 8 months last night!  Reuben has been sleeping through the night since he was in the hospital, but I’ve been getting up to hang his tube feeding and pump, so I’m usually up for at least an hour.  But we were inspired by Reuben’s little ECMO buddy Alana, who’s been off her feeding tube completely for a couple of weeks.  The docs aren’t worried about Reuben being on the feeding tube, but we decided that if there’s a chance he could quit having to have that put down his throat, he might appreciate it, and he wasn’t getting any practice with the bottle by getting fed at night.  So we flipped his schedule around so we offer him a bottle every four hours during the day, then hang whatever he doesn’t eat (at the moment 3.9 ounces:), and pump.  Then in the night I can nurse him, and it’s WONDERFUL because I don’t even really have to wake up — I just bring him into bed with  me and go back to sleep.  And he seems to be able to eat in his sleep, too, so we’re all happy.  I feel so awake and alive –it’s amazing!  We’ll go  back to the other way if he doesn’t gain weight this way, but it’s a real treat right now!

Love,

Jonna, Eric, and Reuben 

I don’t know how Dr. Klein would feel but sometimes when changing Reuben’s face tape we can’t resist snapping a photo of his tubeless face! To Jonna and I it looks very, very odd - like a different baby but a beautiful one!

From NO TUBES

Tonight we had a sitter for the second time (first non-family member).  It was very odd to leave the boy with someone we just met.  She was a nice woman - works as an EMT, had worked at St. Luke’s neo-natal ward, so she passed our medical tests! :)  We went to dinner, and then shopping (wonderfully wild folks aren’t we) It was a fun evening despite being normal stuff since it was the first time we had gone out together in months.  We managed to stay gone for a whole 2 hours I think!  Our hedonistic lifestyle.