reuben's adventure

Today is Reuben's second birthday!  If you ask him how old he'll be on his birthday, he says "two" and holds up both of his pointer fingers.

We're embarrassed that we never even shared our big news – Reuben came off oxygen on December 6.  It is wonderful to have a "cordless" kid.  The first thing Reuben learned to do was to twirl in circles, which he'd never been able to do before.  He was in his first months of walking when he came off of oxygen, but now he runs everywhere.

And he's a little chatterbox.  This week his favorite words are "neighborhood," "excavator," and "truck."  He learns so many words every day – he constantly surprises us with words and concepts we didn't know he knew.  And it is funny to "hear" what we must sound like to him – he often says "Oh, boy," "Oh my goodness" and "mess."  I guess these are things we say a lot!  He also loves to be outside (he says "side!) where he can "dig" in the dirt and "drive" his cars – both little ones that he pushes and bigger ones he can ride on.

All of this means that his development is right on track – which is a miracle, according to the doctors, but Reuben has been one miracle after another, all through his life.  He's such a fun-loving, cheerful, loving boy that it's a joy to be around him.  He loves to read, laugh, and ask us to sing and dance with him.

He still doesn't eat much by mouth, but we've come to accept that this is something that will take a long time to fix.  We work regularly with an occupational therapist on his feeding skills.  He loves going to play with Lisa, the therapist.  We have not ruled out taking him to a specialty program in another state, but it doesn't seem like the right step at the moment.

He can also get out and about a bit more – we visit family regularly and take him to the playground, though we wash his hands regularly when we do these things.  Next month he's even going to start swimming lessons, which I think he'll love.  But we still don't put him in grocery carts or let him run around in public places unless there's a reason; and we still don't take him places where he'll come in contact with someone we know to be sick.  We'll need to be a bit careful again in the fall when cold and flu season starts again, especially because he won't be eligible for Synagis, the RSV vaccine, and a case of RSV could still be very dangerous for him.

But we know that within a few years he will eat and breathe just like a "normal" kid.  When we look back at the pictures from two years ago, and remember everything he went through in those early months, we remember again what a strong, brave spirit he is.

We are so blessed to have him, and to have had all of you who were so supportive and helpful during that dark time.  You all helped us remain hopeful, and for that we will always be grateful.

We think it's time to formally "close" the blog now.  We know that some of you still devotedly check the blog, and others may do so occasionally.  But, as you've noticed, we hardly ever update it any more.  We think that's just a natural progression, and so we'll stop making new postings.  But the blog will remain online – we know that several other families facing similar situations have found it, and we hope that more will do so and that it may help them.

Again, thank you, thank you, for sharing the journey with us.

Love,

Jonna, Eric, and Reuben

We are very excited because we discovered a new book about how to make "homemade blended formula" -- essentially, how to take "real" food and blend it to put through Reuben's g-tube instead of the Pediasure.

Let me start with the basics -- Currently Reuben gets 400 cc/day of 30 cal breastmilk (that's breastmilk with formula mixed into it to bring the number of calories per ounce from 20 (plain breastmilk) to 30 -- that's because it's so hard to get high volumes of liquid into someone who doesn't drink it themselves, so you need more calorie-dense foods.)    He also gets 300 cc/day of Pediasure, because I'm not able to pump enough milk for him any more to make all of his food. 

Yes, that's right -- our freezer stash is finally gone.  At one point our ENTIRE 7 cubic foot deep freeze was filled with breast milk, but we gave some of it away and Reuben was able to use the rest, so now we have grown-up food in the freezer -- what a concept!  I never really kept track but I think at some points we must have had about 15 gallons of breast milk in storage.

For those of you who don't think in cc's, there are about 30 cc's to the ounce, so he gets about 24 ounces of food each day through his tube, plus whatever he'd like to eat by mouth.

I don't mind giving him the breastmilk-formula mix, because breast milk is so good for him.  But the Pediasure is thick and kind of icky to me.  When he throws up it smells like burned cookies (the Pediasure is vanilla flavored), and it's making him have lots of runny poo that's hard for him to pass.  I just figure that I worked so hard for so long to provide him breastmilk, the best possible food -- why would I now switch to giving him formula if I don't have to? 

And we discovered that we don't have to!  There are lots of families out there who are giving their kids real food through the tube, and it's not that hard to get started.  You start just like you do with oral foods -- giving a small amount of a single new food for several days to make sure that the child isn't allergic, and then testing another single food.  Eventually, if we want and it works for Reuben, we can work up to giving him entire blended meals of "real" food through his tube.  This is perfect for Reuben since there's no reason he can't digest real food -- it's just that the Pediasure is the doctor's all-in-one, simple way of making sure Reuben gets all his nutrition.  But we can do that, too, just like we would if he were a healthy kid.

So yesterday I took one ounce of #1 baby food bananas (they're pureed much more smoothly than we can with our current blender) and put it in the blender with 6 ounces of Pediasure to make sure it was thoroughly mixed.  Bananas are also about 30 cal/ounce, so we can give him the same volume as we do Pediasure.

He tolerated it just fine, so today we're giving him 2 ounces mixed with 9 ounces of Pediasure.  Once we know he tolerates that, we'll probably add a bit of flax seed oil to the mix to make sure he gets all the good fats he needs for brain development.  I think we'll try prunes and then applesauce after that.

Other families have found that their kids gain weight better and digest food faster when it's "real" food versus formula, and also that they take to oral foods faster.  It's just anecdotal evidence, but it makes sense -- they taste "burps" of the real food, and also they are accustomed to having it in their bodies and their bloodstreams, so they may be more willing to try it.

I am just so thrilled, I was crying when I read the book about how to do this, and crying when I put the bananas in his milk yesterday.

The next step once we get past the "first foods" will be to buy a Vita-Mix blender, which can liquify the food.  Luckily they have a program that allows families with tube-fed kids to buy reconditioned blenders at a discount, since they cost several hundred dollars.  But it will be totally worth it!

Love,

Jonna, Eric, and Reuben

Well, now it has REALLY been a long time since we posted. I am thinking of switching this to a CarePage, which is a service offered by the hospital -- most importantly, it would send an email whenever we do an update. I know some of you devotedly check for updates that we rarely do anymore, and the CarePage would save you that time. Plus, Children's Hospital is part of a contest in which they can receive prizes if enough Care Pages are started, so it would be a benefit for them, too. We'll see. If we do, we'll post the address here.

The big news since our last post is that Reuben is now officially walking. For a long time he just cruised or toddled from one thing to another, but about two weeks ago he just took off, and he hasn't stopped since. The tube is really an impediment to him -- he never gets very far without it being tangled, poor guy. But he's remarkably patient about that, probably because he's never known anything else. He does seem to think the tube is just part of him -- when the cannula comes out of his nose, he just pops it straight back in. When the tape comes off his face, he holds up the tube until we can fix it -- and he grabs the Tegaderm from us before we can put it on and "sticks" it to his own face. It will really be nice if he can come off the oxygen in December, but we'll see what he needs.

Reuben has now officially had his first cold. He made it through all right, but it was pretty hard on him (and us:)). The doctor advised us to turn up his oxygen from the .5L that he's usually on now back up to 1L, which is what he was on when he came home from the hospital. But his nose was so stuffy that I'm not sure how much it helped -- sometimes the cannula blowing air in would cause big snot bubbles to billow out of his nose. It was simultaneously funny and sad. He especially struggled to breathe at night, and for about three weeks we would wake up about 2 to hear him snuffling and coughing. Once he started to cough, he would start to gag, and then he would throw up everything that we had just pumped into his stomach through his overnight g-tube drip. I didn't sleep in the same pajamas all night long for most of that time, and it seemed we were usually changing the sheets, too. Often I held him upright in the chair for the rest of the night because he seemed to do better that way.

Just when we thought he was over it, he got his Synagis shot (the anti-RSV antibodies). That was a horrible weekend. We spent most of Saturday morning on the phone with the hospital trying to figure out if Reuben was having a reaction -- he just wouldn't stop crying, and one of the books indicated that can be a sign of a rare side-effect of immunizations. They assured us that he wasn't having that reaction, but he was definitely miserable and in pain most of the weekend. Our family doctor later researched it and determined that the formula hasn't changed since last winter, and the shot really doesn't include anything he could react to -- it's a monclonal antibody, without any preservatives or other ingredients. It does sometimes cause severe respiratory distress, and the nurse remains here for 30 minutes after the shot in case he needs epinephrine, but that's the only possible adverse reaction. So we don't know if it was a coincidence, or a resurgence of his cold, or a prolonged pain reaction to the shot itself. In any case, it wasn't very fun. Hopefully he'll do better when he gets this month's shot on Friday.

All in all, the cold and the runny nose lasted about a month, and it all reminded us why we take such care to keep him from getting a cold.

That said, this winter he's been released to play with other kids as long as they don't currently have a cold, so he's enjoyed more time with his cousin Maggie and Mike & Nichole's kids' Sage and Braeden. Sage was particularly sweet to Reuben the other day when they were playing -- Reuben has a little problem with banging on things with his hands when he's excited, including other kids. I was reminding him that it isn't nice to hit, but Sage said, "That's ok, I like it." Crazy kid! I still tried to get Reuben to stop.

He's also talking now. He says "mama," though usually only when he wakes up in the night. We think he says "gaga" for Eric -- he doesn't seem to use his "d"'s. He says "ba" for "bath," "ball," and "bang;" "ka" for "stuck" (when his tube is stuck); and "go" -- or rather "go go go." The other day he had a test at St. Luke's and the parking ramp overlooks the interestate. As we were getting in the car I said, "Reuben, look, those cars are going so fast" -- thinking he would pick up on the "cars." But instead he looked right at me and said "Fa!"

We've also been teaching him some sign language, which is supposed to help them comunicate and feel less frustrated. So far he knows and regularly uses the signs for eat, drink, down, diaper change, potty, apple, puffs, more, beans, sleep, get dressed, and pajamas.

That reminds me of a funny story from his test at St. Luke's - it was a video swallow study, to determine whether there are any physical impediments to Reuben's eating. To do the test, they mix barium in his food and then xray him while he eats. He was upset by all the equipment and the fact that I had to stand behind a wall, so he only ate about 5 bites. But they were able to determine that he still doesn't have very good tongue control, so larger amounts of liquid or solid go down very fast, and the timing of his swallow is not quite right. At any rate, I took refried beans for him to eat because they're his favorite food. After the test, one of the techs apparently asked Lisa, the occupational therapist, why on earth she had tried to feed a baby refried beans -- no kid would like that. Lisa said she just laughed and said, "Oh, you'd have to know my friend Reuben."

Reuben continues his occupational therapy with Lisa every other week, and he has progressed to the point that he loves to put all kinds of foods in his mouth and chew them. He still won't drink any quantity of milk, though (usually not more than 1-2 ounces per day), and he often spits the food out after he chews it instead of swallowing it. But putting food in his mouth and chewing is a huge step!

He loves big trucks and machinery of every kind. We've started leaving the lawnmower out in the back yard, because he likes to go over to it whenever we go outside and push it a little ways. Then he stands there touching and examining every part of it. We went down one nice day to see my dad with his bucket truck, and Reuben thought that was REALLY cool. Grandpa let him sit in the cab and watch them move a pole while someone went up in the bucket. The church behind us is building a new building, so on our walks we always stop by to see how the cranes and bulldozers are doing. And on Thursday mornings when the garbage, recycling, and yard waste trucks all go by -- well, that's the best day of the week for Reuben. One day when my mom was watching him the garbage man asked if he could honk at Reuben, and Reuben LOVED that.

He's also turning into a feisty two-year-old, ahead of schedule. He definitely has opinions about lots of things and likes to test his boundaries. He's having a particularly hard time learning to leave Nana's glasses alone, so we're working on that.

We hope that all of you are well.

Love,

Jonna, Eric, & Reuben

We're clearly not as good about posting as we used to be, but did have some news we wanted to share.

Yesterday Reuben had another procedure to change his g-tube to a skin-level "button."  It's already a huge relief to have one fewer tube sticking out of him that can get caught on things!  Basically the tube works exactly the same way as the one we've had since May 21, so it was nice not to have another learning curve.  The procedure itself was pretty easy and much more painless for Reuben than the first surgery.  As I warned them, they had to give Reuben a pretty hefty dose of Demerol to put him out, and he stayed asleep after that for quite a long time.  After about an hour and a half, the nurse started checking with us every few minutes to see if we'd been able to wake him up -- I think they wanted us out of the recovery room!  I worried that with a four hour nap and falling asleep in the car on the ride home, he'd keep us awake all night, but he went to bed at the regular time.  He did think that 5:45 would be a good time to get up this morning, though.  He's always so happy when he wakes up that it's a joy any time.

Before the procedure, he had his regular high-risk infant follow-up with Dr. Klein.  They'd asked us to turn him down to .5 liter of oxygen in the morning before the appointment so they could see how his blood saturations looked after several hours on that level.  They were perfect!  However, when they did the room-air test (no extra O's), he did desaturate with physical activity (i.e. crawling and walking with help all around the exam room).  So we'll stay at half a liter until his next appointment at the beginning of December.  Dr. Klein said that the goal is to have our Christmas present be to take photos without the oxygen.

He looks great developmentally.  His walking is a bit delayed, but that's not unexpected -- and the fact that he can move around at all with the oxygen tube getting caught on things is a wonder to me.  When it gets stuck, he just turns around and gives it a yank.

Reuben's weight gain is still on track at the 25th percentile, so we'll stay with the same baseline amount of calories through the g-tube.  We talked briefly about his feedings and Dr. Klein said Reuben is reminding him of another patient named Josiah, who also had ECMO, multiple pneumothorices, etc.  He said Josiah's eating improved slowly from the time he was 2 1/2, and that he came off the g-tube when he was 4.  We're happy to do whatever Reuben needs to grow up healthy and strong.

Other than that, we spent most of the time discussing the last Harry Potter book, since we and Dr. Klein are big fans!  

It's hard for me to believe that I let the anniversary of Reuben's homecoming, on August 9, pass without a mention.  That certainly was a joyful day that we will always remember -- like another birthday for Reuben.

Love,

Jonna, Eric, and Reuben 

The hog roast was a rousing sucess!  I am really sorry we haven't blogged about it before.  It is very odd.  I have a very clear memory of writing a post - talking about the weather, the lack of time to talk to everyone, and all the rest but there is not a post!  Perhaps I am starting to dream about blog posts so I am mixed up between reality and my dreams.  Whatever the reason I am sorry we didn't post before. 

Many, many wonderful people came and we were really touched.  Some people drove several hours, some stayed overnight just to be there.  It was great to see so many people who care so much about Reuben.  We are sorry if we didn't get to talk to everyone much.  It seemed like as soon as we were finished with all the hellos it was time to start saying good-byes with no time for real talking. 

Thank you all!

Little Reuben's namesake had a fun time watching RAGBRAI go through Dumont yesterday, with the help of Team Juicy and a lot of passing bicyclists:

When you do a google search for "ecmo photos" Reuben's blog comes up as the second hit.  In the back of our minds we know that what we post here is public but something like this makes it real.  We first started to wonder becuase we were getting comments from people we didn't know on the blog so this morning I did a quick search to test it out and we were even higher than I thought we might be! 

It makes us very happy that people can find what we have written and we hope that it is useful to anyone who visits the blog.  If you are a visitor to the blog please don't hesitate to leave a comment!

It makes Reuben HAPPY!

 

Well, Reuben had another adventure and a close call on Monday night. We had a bit of a storm and I was going around closing windows. I got to the bathroom window that's on the same side of the house as our room, where Reuben was asleep in his crib. All of a sudden there was a huge wind in through the window and I couldn't close it, and a noise like I've never heard before. I remember thinking, "I don't care if the sirens aren't going, this is a tornado." So I ran into our room, grabbed Reuben and yanked the food pump tube out of his g-tube, and ran downstairs, yelling at Eric and Annabelle to come with me. Eric came to the basement and reassured me that there didn't seem to be a tornado, but a branch had fallen from the tree in back. So I came back up to the kitchen with Reuben and was trying to explain to Eric what I'd experienced when there was a blinding white light outside the kitchen window. The electric meter is there and I knew immediately that the branch had fallen on the electrical service. I wasn't sure if the house or the tree was on fire, but I wanted to get Reuben out. Eric went to the basement to shut off the breakers while I ran out the back door with Reuben, headed toward the neighbors. There were branches across the driveway so turned the other way and ran to their front door.

Thank God, once again, for Ron and Pat, who didn't bat an eye when I arrived on their doorstep at 9:30 PM, with a dripping wet baby and a dripping wet dog. We called both the power company (to shut off the service) and the fire department, because we weren't sure whether the tree was on fire, or the house was on fire, or what.

When the fire fighters and the utility company arrived, they used their big lights to show us what had happened.  The entire tree had come down -- the main trunk missed the place where Reuben was sleeping by about ten feet, and instead grazed the corner of the house and fell on the sun porch.  Another branch split off and fell the other direction, onto the driveway, the fence, and the car.  Reuben really does seem to be protected by a lucky charm.

Ron and Pat let us stay the night  at their house, since Reuben needs electricity for his food pump and the service had to be shut off.  Mom came up the next morning to help, and Dad came up after he got off work with the chain saw to chop up the branches as much as we could.  The electricity was turned back on around 3:30.  Pretty soon Ron, Pat, Bev, and Tim were all over here helping us chop everything up.  We just have amazing neighbors.

The tree service came and removed all the wood; there's very little damage to the house; and we should know early next week the extent of the damage to the car.

All in all, we were very, very lucky, and blessed once again with the help of family and friends.

Love,

Jonna, Eric, and Reuben 

 

I'm sure Dr. Klein was exaggerating, but I'm just quoting him.  He was really impressed with all that Reuben is doing and how his development seems to be exactly on track.  The only slight delay seems to be that he's not quite standing on his own yet, but that will come very soon, I'm sure.

Reuben's weight gain has picked up and he's back on the "curve" at about the 25th percentile, which is where they expect him to stay.  

They also weaned his oxygen from 1 liter per minute to 3/4 liter per minute.  Before the next appointment in August, they'll have us turn him down to 1/2 liter the morning of the appointment to see how he does on that.  They're thinking he might come off oxygen at the appointment after that, in September, but we'll have to see how things go.  In any case, they'll leave a tank of oxygen here at the house through the winter in case he gets a cold and needs the support.

So overall, it was a very good appointment, and they were quite pleased with his progress.  Dr. Accaragui, who was one of the doctors while Reuben was on ECMO and also discharged him, stopped by.  Reuben climbed right up in his lap and played with his beard.

We feel so lucky, considering that at this time last year, Reuben was still on ECMO and we didn't know how he would do when he woke up.  We're so blessed to have him, and that he's doing so well.

Love,

Jonna, Eric, and Reuben

I think Reuben likes to show off his teeth sometimes, as these photos show.