reuben's adventure

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