Feeding Tube Awareness Week Feb 6th- 12th 2011

The above pictures are of Elizabeth 2 years ago and again today.  Both pictures show what we are celebrating and drawing awareness to, feeding tubes.  I thought I would remind and also let others who do not know, a little bit of Elizabeth's history.

Elizabeth was born November 1, 2004, at 28 weeks gestation. She weighed in at 2 lbs 12 oz and was only 14.5 inches long.  We aren't exactly sure why I went into pre-term labor except that I had a urinary tract infection that went septic on me.  In other words, the infection got into my bloodstream and made both E and I very sick.  She was born with e.coli septicaemia, e.coli pneumonia, and e.coli meningitis.

She spent her first 43 days of life in the NICU fighting off the infection and learning how to eat and keep her body temperature.  On Dec 13, 2004 she came home just in time for Christmas.  I was of course the neurotic first time mom of a preemie and we didn't go anywhere.

At 3 months old she started having problems breathing.  I took her to the er where they said she had coup, kept us one night and sent us home.  I wasn't so sure they were right and in the following 2 months we ended up back in a total of 5 more times.  Each time they tried to tell me that it was a viral infection, gave me oral steroids to give her and sent us home.  She already had a huge problem with throwing everything up and the steroids here horrible.  The minute i got them in her, she would throw them up.  Also she was crying non-stop, not eating and having problems breathing.  Finally I got a doctor who was a pulmonologist to listen to me.  She had Elizabeth bronched and we were immediately sent to U of M hospital in Ann Arbor via a trauma team.  Elizabeth had no airway to breath from.  Her trachea was covered in scars and was only the size of a coffee stirrer.  The poor baby had been trying for months to breathe through something that was impossible to breath through!!  She ended up receiving her trach on April 12th 2005.  We learned to care for her and after 3 weeks we were sent home.

Her feeding was still a struggle and on days it seemed that she threw up more than she ate.  She was also becoming increasingly difficult to feed and didn't even want her pacifier.  The only thing she would willingly put in her mouth was her own hand.  At this time we also got a new pediatrician who actually listened to us and decided to hospitalize Elizabeth with pneumonia and inability to feed properly.  After some testing it was determined that E had severe GERD and also delayed gastric emptying.  On June 5th 2005 she had surgery to correct or prevent the gerd (nissen fundo-plication) and also surgery to correct the pyloric stenosis (plyoral plasty) and had a feeding tube placed.

From that point on she refused to allow anything at all in her mouth.  She started on formula through her feeding tube(i had been pumping and giving her breast milk til this point)continuously 23 hours a day via a gjtube to her jejunal.

(I will continue her story tomorrow)