reuben's adventure

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.

I had to pull Reuben's feeding tube yesterday because he's been having increasing vomiting for the past week and it's gotten to the point where he projectile vomits every time I put something down the tube.  We tried all variables and discovered that it is in fact the tube that was causing the problem -- he never throws up when he nurses, but did throw up when I put plain breast milk down the tube, so we know it's an issue with the tube itself rather than a developing allergy to the formula mix, etc.  The nurse came today to weigh him and will be back on Friday -- if he can hold his own with nursing and the small amount of foods he'll eat or take from a cup, great; if not, we'll have to see what the docs recommend when we have his high risk follow-up on Monday.  I'm trying not to think about that too much and just hope he can do it himself.

Other than that, Reuben is doing great -- he crawls all over the place and pulls himself to a standing position on the steps and is just his usual happy, cheery self.  He had a nice visit in Davenport and I'll try to post some pictures from that in the next few days.

Love,

J, E, and R

And they always make me sweep for my supper!

But sometimes they let me outside!

Reuben decided to have three top teeth come in at once.  I guess that is good to get them done but it has made him a bit of a crank.  I guess I would be too with bones ripping through my gums but you would think he could take it a bit better!  

Last weekend we took Reuben out for the second time to a non-hospital visit.  It is amazing to realize a 10 month old has only been out of the house (except walks) 2 times when it wasn't to go to the hospital.  We went to some friends in Iowa City for dinner.  Reuben handled himself very well - although I bet they are still cleaning up the floors.  He loved some white bean spread they made which was very, very messy and very strong tasting.  The only foods he seems willing to take are ones with very strong flavors so maybe baby food is just too bland for him.  Perhaps I should bring home some Indian take out.  

Oh and we always have had dogs and cats living together..I just wanted a catchy title!

Tonight we will work on gettting some current photos of the boy up so check back!

Eric