Intensive Phase - Day 1

The past few days of hunger induction have been very challenging. Despite cutting the volume of food through the tube by 40%, Joy still showed no signs of hunger and also did not eat more to compensate. But I realize that this is a process and that Joy needs to re-establish her relationship with food in her timing, not mine.  

Today we started the 1st day of the intensive phase of the tube weaning process. As I predicted, the therapists decided to not give Joy any formula or water through the feeding tube all day.  We have never done this before.  She was cranky, less playful, and easily irritable, which are definitely signs of hunger. She also took more naps during the day, possibly because she had less energy.

Our first feeding session went fine.  Joy seemed interested in eating (sweet peas, formula) and kept opening her mouth and at times, leaned forward to eat.  We also changed the setting and format with no high chair and bibs.  

1st Feeding Session

The 2nd feeding attempt was up and down.  The therapists tried to feed her but she seemed uninterested (probably because she just woke up).  So we let her play for a bit and then tried again.  This time, Joy ate fairly well with sweet potatoes and formula.  We also experimented with mum mums and puffs.  

On the 3rd feeding attempt, Joy was not interested in eating (she also just woke up) so we waited another 1 1/2 hours and I fed her with carrots and formula.  She seemed very interested and kept opening for more.

Joy After Her Last Meal Today

At the end of the day, we decided as a team to give her some food/water through the tube tonight and then to remove the feeding tube in the middle of the night.  Everyone wants to see how well she'll do without the tube tomorrow. This is a big step to take and we don't know what to expect.  Your prayers would be appreciated!