March 5, 2010

Kiera has not been taking in anything orally for almost two weeks now.  She had an appointment at the feeding clinic on March 2 and the team consisting of a developmental pediatrician, occupational therapist, nutritionist, and nurse all agreed that there was something that had turned Kiera away from the bottle and the cause of it could be anything and we may never know why.  The pediatrician suggested that we abandon the bottle for awhile and concentrate on cup feeding Kiera.  Kiera really caught on to cup feeding at the clinic.  The doctor also suggested that we reduce one of her feeds during the day thereby motivating Kiera to feed orally at the next feed.

We also stressed that the NG tube was hindering Kiera's progress.  A traumatic tube change on February 23 had me convinced of this.  The pediatrician agreed and when we asked that Kiera have a 30-day NG tube inserted rather than 7-day, she said that that is what could be arranged.  In the meantime, I asked the nurse to change Kiera's tube that day.  I wanted someone else to see Kiera's reaction to this - the nurse was surprised at Kiera's over the top reaction and could understand why it was so traumatic for me.

Finally, arrangements are being made for Kiera to have a gastronomy in two months if the softer 30-day NG tube doesn't make a difference in her progress.  A gastronomy is a procedure to put in a G-tube which is a feeding tube that goes directly to her stomach.  Taking the aversive stimuli out of her nose and throat will likely help her feed better orally.

So, armed with a new strategy we believed that Kiera would progress.  Unfortunately Kiera only fed well from the cup once in three days.  We discovered that Kiera has thrush which likely is causing pain from her lips, cheeks, gums, tongue. throat, and esophagus.  Today, after three anti-fungal treatments and some Tylenol, Kiera is starting to feed from the bottle again -- although very cautiously.  Thrush not only can cause painful mouth sores but can result in painful and smelly gas and bad diaper rash.  Fortunately, Kiera does not have the diaper rash yet, but the yeast is making her very gassy and she has a hard time passing it.  Naturally, these painful episodes occur right around feeding time, complicating her progress further.