reuben’s adventure

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

To start with the most important thing:  the long-awaited HOG ROAST will be Saturday, August 4 from 5-10 PM at Daniels Park here in Cedar Rapids.  Hopefully most of you have gotten birthday postcards now with save-the-date information, though I still have one batch to address . . . having an infant in the house gives me an excuse for having everything in a not-quite-finished state:).  But if for some reason you didn’t get a card, just come anyway (and let me know so I can add your address to the list.  We lost our address book on the computer and I recreated it as best I could but have great fear that I forgot someone).

Reuben has already started to live on the wild side now that cold and flu season is over.  This weekend we went to the Farmer’s Market — we just pushed him in the stroller so no one could get too close to him.  He LOVED seeing all the people and colorful things on display.  Then we went to Cousin Maggie’s birthday party and they got to meet and play together for the first time.  Neither of them was too interested, though.  Maggie was busy with all the rest of her guests, and Reuben was much more interested in vertical railings of their new deck, which allowed him to have something to hold onto so he could stand up.

We also had a fun visit from friends Joyce and Jacob, and went to the playground.  Reuben has also gone with me to Meeting twice — we figured that when they warn us against taking him to church, they’re expecting the membership to be something you would have to count on the fingers of two hands:).  Since there are usually only half a dozen of us, and everyone knows about Reuben’s special needs, we thought it was safe to take him.  He is SUCH a great little kid — the first time he just snuggled on my lap talking to himself.  The second week he wanted to get down and play, so we went out on the porch and watched the folks getting out of the church across the street.  I fear, though, that Quaker worship doesn’t really speak to his condition — I think Reuben would probably prefer all the singing and bright colors at the African American services Eric and I went to for a class he took in college.

And then last night — DANCING.  I’ve wanted to take a social dance class forever, and we figured we could do it easily if I carried Reuben on my back and Eric carried the oxygen on his.  All three of us had a blast, and Eric and I managed to successfully learn to swing dance — or at least to do the basic step and two twirls.  Reuben just loves music and dancing, and got a real kick out of watching everyone.  Of course, everyone thought he was incredibly cute.  We just asked that no one touch him and that was fine.  I can’t wait for next week’s class.

Hope you’re all able to enjoy the beautiful weather after all the rain!

Love,

Jonna, Eric, and Reuben 

Last night we used the drip pump for the first time, and I really thought we had it all figured out.  The machine is simple, and I found a way to position it in the room so that Reuben could be in his crib but we could move him into our bed if he wanted to nurse in the night. 

About 2 AM last night the pump alarms meaning the feeding is done.  This was what we wanted so Jonna could hop up and pump then.  When she got up she moved the pump stand and I mumbled something about being careful becuase Reuben was hooked up to it and the tubing wasn’t very long.  She said “he is?” and held up the end of the tube….I reached over to check Reuben and found a huge wet spot next to him.  Apparently when transfering him from crib to bed the tube was pulled out and we pumped 3 ounces of food into the mattress (I doubt it will grow much).   Does anyone know how to dry a mattress wet with breast milk and formula?  I wonder what smells we will start to get!  

So the learning curve goes on, but aside from user error think the G-tube seems to be working well. 

Well, we were stressed but they assured us it went well.  :)  The procedure took about half an hour and then it took another hour for Reuben to really come out of the anesthesia.  During that time he was doing a pitiful cry which was very sad but now he is looking like himself.  He is playing in Jonna’s arms and wondering why he can’t get on the floor and run around. 

Thanks to all of you for your well wishes and prayers - I am sure they helped since he is looking great!

Eric, Jonna and Reuben

We celebrated Reuben’s birthday today with a lot of joy in our hearts.  We just had a small gathering for immediately family with cake and ice cream.

It’s hard to believe everything that’s happened in the past year — much different than we ever dreamed it would be!

But we feel very blessed and thankful for our precious boy and for all of you who have journeyed with us.

Love,

Jonna, Eric, and Reuben 

Reuben’s surgery to place a g-tube has been scheduled for Monday.  We’re meeting with the anaesthetist at 1:00 and the surgery will be at 3:00.  It’s all supposed to be very straightforward.  Given Reuben’s chronic lung disease, they want to do general anaesthesia so Reuben can be intubated and if anything should go wrong they can immediately provide respiratory support.  To me, it’s a sign of what a strange year it has been that my main question was what kind of ventilator they wanted to put him on — last year at this time I don’t think I knew what a ventilator was, and now I wonder about the benefits of various kinds!

We’ll stay overnight in the hospital and bring him home on Tuesday.

This wasn’t an easy decision for us, but after talking with Dr. Klein, our family doctor, the OT, and a nurse from a program in Virginia that specializes in weaning kids from feeding tubes, we concluded that it’s probably best.  When we realized that the only reason against it seemed to be Eric’s and my reluctance to do it, we decided we should go ahead.  The OT felt that she had gone as far as she could with Reuben while the NG tube is still in the back of his throat — that at this point, the NG tube itself is a big part of Reuben’s reluctance to eat.  This was verified a bit by our observation that he ate much more the week we had the feeding tube out — but still lost three ounces.  So he’s not ready to go cold turkey without any feeding support, and we can’t take any risks with his calories at this crucial stage of development.

I think it was hard because we’ve also never felt that any of the decisions about Reuben’s care were really ours to make.  When he was very ill, it was plain that we didn’t know anything about how to save his life, and the doctors did. Everything was so critical and plainly needed to be done.  I remember waking up the night after Reuben was born (almost exactly a year ago!) about 2 AM and going down to Reuben’s room in the NICU.  All of a sudden this guy (who I later realized was a resident, but at the time I didn’t even know who all the people were) materialized at my side with a form that he was sort of sheepishly but persistently asking me to sign — it was retroactively giving them permission to give Reuben a transfusion he’d gotten almost immediately after he was born.   Even if it hadn’t already been done, there would have been no question in my mind.  And then the day Reuben’s lung collapsed and they wanted to put him on ECMO, one of the residents came up to me and Eric while all of the surgery preparations were being made and one of the fellows was saying, “We don’t want that stat, we want it emergency.”  The resident started to go through the list they legally have to tell you, of all the risks and benefits of the procedure, and I just cut him off and said, “Whatever.  Where do I sign?”

So, it’s been strange to be back in a decision-making role for Reuben.  And there are ways in which we still know that the doctors know more about certain things that we do.  The GI doc was telling us that they probably wanted to do general anaesthesia because of Reuben’s breathing issues, but that they’d have the anaesthesiologist call us to talk about it.  Eric and I just looked at each other and said, ” That really wouldn’t be our decision; we would rely on Dr. Klein’s advice.”  But Eric and I both felt strange that they would think of leaving such a decision to us — we’re not used to it.

It’s all a little frustrating because we (especially I) feel that Reuben’s feeding issues were not handled as aggressively and comprehensively as they should have been from the beginning.  But maybe that’s not true, I don’t know.  At any rate, we can’t go back in time; we have to move forward from where we are now.  So hopefully the surgery will help us do that.

So, once again, please play for Reuben on Monday.

Love,

Jonna

I had a wonderful Mother’s Day and feel very happy and blessed.  Yesterday I went down to Davenport to celebrate with my mom, brother, and sister, and we had a nice time.  I had told Eric that I wanted to celebrate today by fixing the archway roof over the front door, which has been falling apart since last year and really needs some attention.  But when Eric got up on the ladder, he heard the cheep-cheep-cheep of little birds who were having a little Mother’s Day celebration of their own in there, so we decided that project will need to wait six weeks or so.

So instead Eric and Reuben played on a blanket under the tree while I (almost) finished planting the ridiculous number of flower seeds I bought.  Reuben pulls himself to a standing position all the time — outside he was standing up using the little Pooh riding train Grandma and Grandpa Freese sent from California, and in the house he crawls straight for the bathroom because he likes to stand up next to the bathtub — and see if staring will cause water to run into the tub for him to play in!

Reuben is so cheerful, happy, and alert - -I’ve said it here so many times before, but he’s just a joy to be around.  Everyone said that being a parent would be a source of great joy, and I knew that of course I would love my child.  But I didn’t expect to like him so much.  He’s just really, really fun to hang out with, and I feel like every day since he woke up has been my day.

On the health front, we’re still gathering information from various therapists and trying to figure out whether to go forward with the g-tube or not.  To use a Quaker phrase, I just can’t seem to get clearness that it’s the right thing to do, which makes me feel very uncomfortable about it.  Reuben is doing very well now that we increased his feedings a bit — he’s gained nearly two pounds in almost three weeks, which is encouraging.  We’ll keep you updated as we find out more.

I thought the Gazette editorial today was very nice — it talked about how Mother’s Day is a time to celebrate all those people who’ve nurtured, loved, and been kind to us.  We’ve been blessed with so many mothers in our lives, and we wish the best for all of you.

Love,

Jonna 

I try to find something funny, or at least interesting to post so that not only do you get up to date information about Reuben’s condition and life but you are marginally entertained.

I can’t find the funny in yesterday’s appointment. Not because it was bad, but because it was dull! We had a different nurse who was as bored as possible without actually falling over, we had a nice resident who was clear/thorough/concise but dull, and we met the doctor who would do the procedure - for roughly 3 minutes. For the record, he too was clear, concise, and thorough.

We are not excited about the procedure, but I believe we are going to go ahead with it. The benefits to Rebuen to be without the NG tube outweigh the risks. The risks seems to be the same as any surgery - infection, pain around incision, etc. Meanwhile the advantages are not having the tube in his throat, assurance of getting enough calories, and he looks much prettier without the NG tube (well that isn’t a big factor but he is a lot cuter without the tube.)

In another example of how we actually have a pretty healthy child, they have no idea when they can do the procedure but they might be able to fit us in before the end of May. 

The high point of the visit was stopping by the NICU on the way out. We got to see a lot of people who were part of Reuben’s care and they were all delighted to see how good he looks. It is hard for me to even remember all the people who sometimes spent hours standing by Reuben watching over him but we are very thankful to all of them. 

Thanks for all your well wishes and prayers!

We are still considering our options regarding what would be the best thing to do for Reuben in regard to his feedings. It’s a little odd for us to feel like this is our decision. When we were expecting Reuben, we tried to learn as much as we could and make decisions about what would be best for him. We chose our doctor, hospital, doula, and natural childbirth based on information about the best odds of a healthy mom and baby. Obviously, none of that could guarantee a healthy baby, but we feel like we made the best choices we could.

Then, when Reuben was very ill, we had to change our mindset again and place ourselves completely in the hands of the doctors.  It was clear that if anyone could save Reuben’s life, they could.  We couldn’t.  So we had to get into an attitude of trust and letting go.

Now again it feels like there are choices to be made based on what we know about Reuben and his skills and capacities, as well as information we can gather from other parents, the occupational therapist working with Reuben on his feedings, etc.

In the scheme of things, as the doctors reminded us, we are very lucky that Reuben is doing very well and doesn’t appear to have any brain damage, given everything he went through.  His development is phenomenal given everything he’s gone through, and we don’t want to jeopardize that by not getting him the calories he needs at this crucial time.  

At the same time, this has been very hard and overwhelming for us.  We just really weren’t anticipating another major stumbling block, and so it hit us pretty hard.  This time, we’re also more concerned about the impact on Reuben.  He’s so aware and observant about everything that goes on around him, and while he obviously may need to have certain medical procedures, we want to limit the traumatic impact for him.

He has his appointment with the GI doctor, Dr. Bishop, on May 9.  At that time we can ask more questions, and we’ll try to post more at that time.

Best,

Jonna

Reuben broke is string of great doctor visits yesterday with a bad High Risk follow up.  He is not gaining weight very well at all.  He just has not taken off on eating very well so as he has grown he hasn’t been able to get the extra calories he needs.  They have recommended a “G Tube” which is basically a feedint tube straight into the stomach.  It seems like the best option since it would remove the nose tube so he may do better at eating, yet it would still supply all the nutrition he needs.  However it is a surgery and comes with all those risks.   Since we just started thinking about this yesterday I don’t really know what else to say right now, but we will keep you all posted as we figure out the next step!

Thanks for all the good thoughts and support.