reuben's adventure

A number of people have asked us when we expect Reuben to be off oxygen -- the short answer is, we have no idea:).  He's currently on 1 liter per minute of oxygen through the nasal cannula, and the doctors say they will leave him at that level until he comes off the oxygen completely.  Because he is growing, leaving him at that level is effectively weaning him.

On the morning before Reuben went on ECMO, Dr. George told us to expect that Reuben would be on oxygen for 2 months to a year.  After that, Reuben had two pneumthorices and was on the ventilator for many more weeks, so we won't be surprised if he's on oxygen until he's a year old or more.  On the other hand, it could be shorter.  One of the things that was hard to get used to at first was that nothing is set in stone -- everything is done by how Reuben is doing.  When he was in the hospital, that was hard to get used to -- we'd hear a plan at rounds, and then an hour later when Reuben's sats changed or a blood gas came back different than they expected, the plan would change.  We soon realized that this was best -- the docs follow Reuben's plan, not the other way around.:)

We could have the feeding tube for many more months, too.  

And in the end, none of it makes much difference to our lifestyle for the foreseeable future -- even if he gets off the O2, he still can't go out in public until next April or May, after the cold season is over.

Got to go -- my boys are playing on the floor and I want to join them.:)

Love,

Jonna

We have so much to be thankful for this year -- Reuben is alive and well, and that is a constant joy and blessing.  I went down to my folks' for dinner today and Reuben and Eric stayed home, and I missed Reuben's sweet smile and little gestures during the hours I was gone.  

I'm so thankful for Reuben, and for all the doctors and nurses who kept him alive for us, and for all the family and friends who continue to take such good care of us -- for example, I think Eric ate better than I did today, because our neighbors Pat and Bev knew he was home alone and brought him big plates of food, fresh homemade bread, and delicious desserts!

I'm so grateful for Reuben's life every day, and that's one of the learnings from his illness that I hope I can always hold onto.

Jonna

Jonna is at meeting this morning and I thought Reuben looked a bit hungry (see it was a process of elimination - he woke up from a nap, and I just changed him so even I could figure out he must be hungry - he only has 3 needs really) so I heated up a bottle.  Up until now when I have given him a bottle it has been a battle of wills to get him to take it.  He trashes around, I keep the bottle lined up...and eventually instinct takes over and he sucks a bit...then he flails around....sucks a bit  - over and over.  It is quite a game for us!

However today when I had him in my arms and reached over and picked up the bottle his mouth flew open and he spread his hands to grab the bottle and "help" me get it in his mouth (help with a child is a relative term...he wants to help but usually he makes more work for both of us)  He slurped down a little over an ounce in one chorus of "Sweet Baby James"  (everything in my time with Reuben is measured in how many times I have to sing "Sweet Baby James")  

An ounce certainly isn't a lot for a 6 month old but to actually have him excited about taking it and to on some level grasp that sucking on the bottle can help the hungry pains...that is big for a post-ECMO kid.  He may never take all his enriched food from the bottle but at least he is learning to like something new

Speaking of learning something new he has flipped himself over again and is very upset with the world that he can flip back...so I have to go 

Reuben has passed a number of milestones recently. On October 28, he marked 81 days at home, so he's now been at home longer than he was in the hospital. We love to think that we've now woken up more days with him beside us than we did with us here and him there. On Monday, he'll be 6 months old -- it's so hard to believe he's been with us for half a year!

As of last Wednesday when Tai, the visiting nurse, was here, Reuben weighs 16 pounds, 14 oz.  Like most other things in his life, this is an odd milestone because it is actually the second time he has weighed this much.  When he was on ECMO, they used the kidney portion of the bypass to take off excess fluid that had accumulated as part of the first three weeks of treatment on the ventilator, and during that process they removed over 8 pounds of fluid.  Since Reuben weighed 9 pounds, 7 oz at birth, that means that he has already weighed over 17 pounds once in his life.  We like this weight better -- it is all muscle and long arms and legs and cuddly little baby fat.

He now turns over from his back to his tummy very regularly -- in fact, he did it just now! If you put him on his back on the floor, he's going to flip over within a minute or two. The only trouble is that he hasn't yet learned how to flip back, so he gets tired and starts to whine, as if to say, "who did this to me?!" Last Friday was the first time he turned over all by himself, and he was apparently so impressed with himself that he kept turning over in his sleep all night. This was problematic because, as you might imagine, it's hard to STAY asleep when you're leaning on your elbows with your head up in the air! Luckily, having him in the co-sleeper next to us makes it easy to flip him back over without having to get up or really even wake up ourselves.

Tomorrow night my folks are coming to stay with Reuben for the evening and Eric and I are going to go to his cousin's wedding reception. This will be our first real time out since Reuben was born (we don't count all the times we ate out at the hospital cafeteria when he was sick, since what they serve there could best be described as "food" and we weren't having a lot of fun at the time.) We're looking forward to it!

Love,

Eric, Jonna, and Reuben

We were supposed to have an appointment with the speech/swallow therapist in the high risk infant clinic this morning.  

Scott really helped us when Reuben was getting started nursing (long-time blog addicts may remember that Reuben wouldn't

latch on until Scott walked in and ran his finger around Reuben's mouth, at which point Reuben dived toward me, latched

on, and hasn't looked back since).  We were concerned that maybe Reuben had some mechanical issues that were 

preventing him from taking the bottle.  Although that seemed unlikely since he does nurse so well, we wanted to rule out 

mechanical problems just to be sure.  Over the weekend, though, Reuben started to reliably take one or two ounces a day from 

the bottle, and since Scott has a cold we all agreed that we'd cancel today's appointment.  He reminded us that all 

post-ECMO kids tend to have serious feeding issues, and that we need to remember to take things one step at a time.

It reminded me of one of Dr. Klein's comments from rounds:  "Some of these kids just never really do get the hang of

eating by mouth, and they go straight from the feeding tube to eating hot dogs and Doritos."  While I don't think our

family doctor would approve of hot dogs and Doritos as nutritionally appropriate for Reuben, it was a humorous way to 

remind us that Reuben has had a crazy experience -- running his blood outside his body through machines for 11 days,

not to mention being intubated for 48, is bound to have some lasting side-effects.  Given that, he's doing amazingly well,

and we wanted to share Scott's comments to that effect:  "We all feel that Reuben is doing

exceptionally well considering his difficult start.  The fact that he

started breast feeding and has continued to do it is wonderful.  He has

come a very long way through some very difficult medical issues. I

always love it when kids surprise me in good ways like Reuben has."

So now the surprisingly good boy and I are going to take advantage of the sunshine and warm weather and go for a walk.

Much love,

Jonna, Eric, and Reuben 

See the album "Halloween" for Reuben's costumes (the pumpkin one from Grandma Freese and the duck feet knitted by neighbor Bev Thornton), as well as our second-ever picture of his naked face (the first one was IMMEDIATELY after birth and not really suitable for public consumption . . . :):).  We had to change his nasal cannula today so had all the tape off his face for a few minutes.  It's hard to believe he's even cuter without all the "face jewelry," as Dr. Nate calls it!

Love,

Jonna, Eric, and Reuben