reuben's adventure

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!