Wednesday, March 2, 2011

"If we are marvelously wrought upon even before we are born, what shall we say of the Lord's dealings with us after we leave His secret workshop and He directs our pathways through the pilgrimage of life?" 

It is definitely time for an update.  Victoria has now had quite a few clear days...where no bacteria showed up in the CSF.  This means that she is close to being able to have the shunt put back in.  However, right now, our main concern for her is her feeding.  She is being fed via a nj tube at the moment...but she will of course need to eat on her own.  If she is not able to get enough nutrition on her own, we are considering having a G tube put in.  Right now she is in the testing stage...we are trying to feed her, and see if she will be able to remember what she needs to know on her own.  We have begun feeding her orally with a little dropper.  She sucks that milk down well, so she can still swallow reasonably well.  She has not done well with a nipple before today.  This afternoon, they tried a special nipple, and she did suck on that one for a little bit...with a little help reminding her cheek muscles what they need to do, and a little pressure on the chin.
It seems like her muscles have forgotten how to suck properly. After having nearly a 3 week break that is really not too amazing, and of course, she has been very sick, as well.  I was really excited to see her actually do some sucking, though.  It was a lot of work for her, and her heart rate was pretty fast while she was doing it...but hopefully she will get at least some better as she gets stronger. 

The reason watching her feeding, and trying to help her re-learn is stalling things a bit, is because if it seems a G-tube will be essential to help her get good nutrition, the neuro surgeon would like that surgery to be done before the shunt is put back in.  The reason for this is that a shunt infection is more likely to occur if there is a surgery in an area close to where parts of the shunt are it is to help eliminate factors which could cause a shunt infection to reoccur. 

She has had a somewhat agitated afternoon...she did calm down for a little while when I patted her back and put my other hand on her tummy...but mom's 'magic touch' only lasted about a 1/2 hour, then she was uncomfortable again.  We even cuddled for a little over an hour...and she still was not at rest.   She is at rest now though, and looks peaceful and comfortable.  Thanks for praying!!  We are so grateful! 

Maybe you could add one more to your prayer list.  There is a boy here named Noah with a bad case of pneumonia.  I met his mom in the family room...and I know she also would appreciate your prayers for Noah.  Thanks!

In acceptance lieth peace,
O my heart be still
Let thy restless worries cease,
And accept His will
Though this test be not thy choice
It is His  -- therefore, rejoice.
                    H. Hurnand


1 comment:

  1. We are still praying for you all! We may be beginning a shunt revision journey ourselves pretty soon, and that poem by H. Hurnand spoke right to where we are. Thank you so much for your testimony through your trial. You have been an encouragement to us, though we have never met.