reuben’s adventure

Starting the week after next, Reuben will be getting monthly shots of Synagis, the vaccine against RSV.  The pharamacy called to make sure we know the plan and when the dose will arrive (via UPS in a cooler) so we can get it in the fridge right away, since it costs $2000 per shot.  Tai, the visiting nurse, will administer it when it arrives.  This is all just part of the main goal of our lives right now — to keep Reuben from getting sick this winter.

He is doing great and is just a happy, snuggly, loving baby.  He giggles constantly when we help him stand up on his legs and also likes to sit up.  We still haven’t found a bed time routine that is meltdown-proof but we’re lucky — what constitutes as a “meltdown” for Reuben is more than 1 minute of crying, and I can only think of one time he cried for more than 5 minutes.

We’re mostly just doing what works for us with parenting, and that seems to fall into the “attachment parenting” style advocated by people like Dr. William and Martha Sears.  Apparently the research suggests that this kind of responsive style reduces crying time to minutes per day, and that’s certainly the case for Reuben.  One part of this is babywearing, which lets us snuggle with Reuben while getting other things done, too.  I think we would have liked this anyway, but it’s especially important to us due to Reuben’s illness and the length of time before we were allowed to hold him.  Given a choice, I don’t think either of us would ever put him down, and this lets us do that:).  I’ll post some pictures of us with Reuben in a sling, though these were taken early on when we were learning.  We’re both more comfortable with this now and are moving on to learning how to wear him in a wrap — Eric has been doing lots of research to find one we’ll like.  Laura Belin loaned us hers to try out and we’ve been having fun with it.  If Reuben were healthy we’d always take him on walks in the sling rather than the stroller because it’s so much less cumbersome and lets him see so much more.  However, the stroller provides the great benefit of carrying the heavy, awkward oxygen tank, so we usually use it.  It is fun to see Reuben’s reactions to the world around him when we carry him in the sling.

Love, 

Eric, Jonna, and Reuben 

Well, Reuben is just growing and changing all the time. We think he might be starting to feel his teeth — he’s drooling a lot and likes to press things against his gums, rather than just put them in his mouth. I’m not ready for him to get teeth yet, I haven’t had enough of him being a baby!

I’ve posted some pictures in the album “Growing Strong.”  Reuben went outside and laid on the ground on a blanket for the first time. I’ll also put some pictures of him sitting up and doing tummy time on the exercise ball. We’ve really struggled to get him to do tummy time but so far we’ve found that he’ll do it better if he’s (a) naked or (b) on the exercise ball. I think he likes the ball because it’s squishy rather than hard like the floor, and unlike the mattress he can see around the room more and doesn’t feel so smashed down flat. I suppose if we put him naked on the exercise ball he’d be ready to crawl in a week or so:).

We also have some pictures of last weekend’s visit with “the original Reuben,” Eric’s Grandpa Freese, who hadn’t seen him since Father’s Day, when little Reuben was on ECMO. Obviously there’s been a big improvement! I’ve also been trying to take pictures of him wearing all the cute clothes people have given him — I think in these he’s wearing gifts from Carole and Aunt Ardith, as well as others.

One of the baby books called this the month of “Big Hands” and Reuben is definitely interested in his. Of course, they go straight in his mouth and then his tubes are great handles. I would recommend to all parents that they dispense with the expensive and various toys and just tape tubes to their kids’ faces — it seems to provide all the entertainment necessary!

Love,

Jonna, Eric, and Reuben

Well I am not sure he would notice but we would love to have visitors.  If you have been thinking about calling and coming to see us please do.  We are very settled into our routine and I think it is good to have the boy see other faces. Plus, to be honest, we would love to see other faces too!  

E 

For the last two days Reuben has not been sleeping through the night very well.  Either he is hungry, wet, fussy, or some combination.  This hardly ever happens and it makes me almost thankful he has a feeding tube.  With a regular child sleeping through the night is rare, where with Reuben we are spoiled.  Aside from a quick feeding at 2AM, which he sleeps through, we get a full night’s sleep all the time.   So our feet are dragging the last few days because we are having to stay up a lot more!  

Eric and I feel like we’re getting pretty skilled and comfortable with the equipment Reuben needs — but of course, there’s always room for something new.  The other night we were getting ready to go for our walk, so we switched Reuben over to the portable air tank and then Eric went over to turn off the big house tank.  All of a sudden the water bottle that’s attached to the house tank to humidify Reuben’s air starting hissing and foaming and water started shooting up in big jets toward the ceiling.  Eric hurriedly tried to turn off the tank and get the water bottle unscrewed from it but it kept getting worse and we were both totally confused.  After a minute I decided to move Reuben in case the tank was going to blow up or something, but when I went to pick him up along with the portable tank, I couldn’t trace the oxygen tubing from one to the other.  I just stood there running my hands down the tubing and feeling mystified until I realized that Reuben wasn’t connected to the portable tank at all — the portable tank was connected to the house tank, so it was running a liter of flow BACK toward the house tank, and the house tank was running a liter toward the portable tank, and it was all getting jammed up in that poor little water bottle, which was stretching and expanding and hissing furiously!  Finally we got the portable tank connected back up to Reuben, and Eric  got the water bottle unscrewed, but there was so much pressure in it that it just kept squirting out water in big jets halfway across the kitchen for about 25 seconds.

After that we had a very nice walk:)

Reuben seems to be doing well, though we had to increase his formula/breastmilk enriched feedings a bit again.  His weight gain over the past month has been 19 grams/day, when the goal is 20-30 grams per day.  This means I need to give him more tube feedings during the day instead of being able to breastfeed the whole time, which also means I have to start pumping during the day again, but those things aren’t a big deal as long as Reuben is growing well.

Love,

Eric, Jonna, and Reuben 

Reuben seems to have decided to be mama’s boy for a while.  Our plan is that when Eric comes home he gets to play with Reuben while I make supper and do other things around the house.  However, Reuben doesn’t seem to like that plan. 

Part of it is that we need to change his feeding schedule.  For the past three days he’s thrown an absolute fit when we tried to hang his 5 o’clock feeding — basically he screamed until we took the food down.  He only seems willing to take the feeding tube feedings when he’s asleep, so we think we’re going to have to change to giving him tube feedings at 8 PM, midnight, and four instead of 5 PM, 9 PM, and 3 AM.   The new plan means we’ll have to get up twice in the night, which is a less exciting prospect than the current plan, but it seems like something we need to try.

Once he gets upset, though, Reuben seems to have developed a definite preference for me.  Eric is great about understanding that it’s because I spend more time with him and not taking it personally.  I really wish Reuben wouldn’t do it, though — partly for Eric’s sake and partly because as much as I adore just sitting and looking at and interacting with him, I need to be able to go out and water my flowers or take the dog for a walk once in a while.  Sometimes I do those things with Reuben, but a little alone time is also a good thing.

Reuben is getting stronger every day — he can really sit up and hold his head up well if we hold his hands.  Sometimes I can even trick him into doing a little tummy time on my stomach.  

Today I got brave enough to take him for a walk by myself.  I was nervous about managing him, the oxygen tank, the stroller, and the dog (and the dog gets so sad when she’s left at home that that isn’t an option), but it went very well.  I should find some kind of harness for her because she insists on getting in front of the stroller and she really wants to go fast:).  (Just kidding, I would never do that).