Friday, September 2, 2011

what feeding tube?

preparing to celebrate the feeding tube

Yesterday we had an appointment at the hospital with Joseph's pediatrician. It was The Big Feeding Tube Appointment. If the trial medication had not helped him rise above the second percentile line of the WHO chart, we knew the tube was going in. We knew the medication had not done so. So we prepared well. We gave the girls real feeding tubes to touch, handle, play with (and become bored with) in hopes that when Joseph came home wearing one they would not be fascinated by it, need to touch it, and end up pulling it out. I explained the tube to Maria in depth - until she was quite peaceful about it. She even took one to her Montessori preschool and explained it to the other children at "mat time".

Richard and I had decided the only way to approach the inevitable tube was to plunge right into it head on. We decided not simply to accept it in defeat but to embrace it. To paraphrase Kimberly Hahn, it wasn't that Joseph "had to" have a tube, it was that he was going to "get to" have a tube. Other children in the world needing that kind of assistance aren't always able to access it. Other parents would give anything if only their child could receive nutrition through a feeding tube. We drove to the hospital yesterday totally ready. And then, as has become the norm with Joseph, we were blindsided by another non-event. The nurse weighed him. The doctor plotted him on the chart. We all saw his little dot sitting there firmly on the second percentile line, not having moved the titchiest little bit since last time. We sat down in the office with our calmest faces on, ready to hear the precise date the tube was going in (on the drive over we were guessing it would be Monday). But instead we heard that there would be no feeding tube - and no more talk of feeding tube - unless Joseph fell beneath that second percentile line. It was bewildering. I actually felt disappointed for a fraction of a second. Really. A long medical explanation followed, of which there is no succinct blog-worthy summary. Only then did the full triumph hit us. Richard high-fived me in the hallway. I don't really "do" high-five. He worried that I was not really joyful about this news - I mean, doesn't everyone high-five when they get good news?????  No, love; in fact, women often weep at good news. Be glad that I am not weeping.

Joseph's liver functions are back in the normal range for the first time in almost four months, which is huge news. Basically the only thing right now that is really "wrong" with him is that he is growing at the same pace of any other normal, healthy child who follows a curve on the WHO chart (but doing so on a very unpretentious curve - the docs would prefer that he grew at an accelerated rate so as to rise on the chart - even though his "compromised" liver is already accomplishing the same feats of which a healthy liver is capable. Perhaps the doctors' desire strikes others as unfair as it does us!) In other words, Joseph's only abnormality right now is that he is very small - he's still wearing some of the same clothes that he did as a newborn 5 months ago - but he also wears many items that are completely appropriate to his age. He's very strong and all of his developmental milestones are completely on target. We are very blessed.

This crisis seems finally to be truly waning and our next adventure is that of starting Richard's job search for our June 2012 return to the US. More on that in coming weeks, but prayers and "leads" would be extremely helpful. These past two years have been for us an experience of radical dependence on Divine Providence. And by "radical", I mean "crazy". Finding a job is kind of the final(??) (and biggest) area (of this mission!) in which we are casting ourselves trustingly upon the Lord. Once that's sorted, we'll start discerning our next act of foolishness for Christ. Stand by.


  1. We're so happy for all of you. We'll also keep praying and putting Joseph's name in the prayer basket at church.

    Aunt Carla

  2. I'm so glad that Joseph's getting better!

  3. Praise God from whom all blessings flow!!!

  4. Let nobody ever question the power of prayer!

  5. I'm so happy to hear that! Besides, not all children need to be int he 90th percentile for growth. My almost-20-month old is in the 2nd percentile and that's just who he is. Besides, what he lacks in height and weight, he makes up in attitude and determination. ;)