5 kilos

It had become clear that Bekah couldn't breath on her own.  She would have to be transitioned to a home ventilator.  This is a smaller version of the hospital vent.  But to use this, she had to weigh at least 5 kilos, that's just a little more than 10 lbs.  She only weighed 4 kilos and was underweight due to all the interruptions in her feeds for so many procedures.  Her milk was fortified to help fatten her up more quickly and her feedings were finally regular.

Occupational therapists began working with her to encourage her to use a bottle.  This was a challenge.  She breastfed for the first 3 weeks of life, so the bottle was foreign to her.  She hadn't had anything by mouth for half of her life and now she was being encouraged to coordinate her muscles in such a strange way.  If she didn't latch on, she was going to have to have a g-tube.  They tack the stomach to the abdominal wall poke a hole in the belly and insert a feeding tube.  This tube is held in place by a water filled balloon inside the stomach.  I hated the idea of it and held my breath anxiously during every occupational therapy session.  Sometimes I was so tense I had to leave the room.  I couldn't tell her "Come on, honey, take a sip or they're going to poke another hole in you."  The work continued daily for weeks.  Finally the therapist looks at me and says, "I feel like she's right there.  She's right on the verge and just about to latch on."  I was so excited and finally looking forward to the next session.
The next day when the therapist arrived, Bekah wasn't doing well.  Her blood oxygen saturation was
low and her heart rate was high.  She was struggling to breath.  There would be no therapy today.

Bekah's right lung had collapsed.  Days would pass before she was strong enough to try again.  Speech therapists wanted to be sure Bekah could swallow, so they performed a blue dye test.  A bit of blue food coloring is applied to a pacifier and Bekah was encouraged to suck.  Over the next 24 hours we were to watch carefully that none of the secretions we suctioned from her trach were blue.  If this is the case it would indicate that she wasn't swallowing her saliva and was instead breathing it into her lungs.  This test was passed with flying colors, or rather the lack there of.  All of her secretions were normal.

The next step was a blue dye swallow study.  She was given a bottle of milk dyed blue and the same process was to be repeated. Unfortunately, she didn't latch on and she didn't suck.  She did swallow what poured into her mouth.  Because she wouldn't suck and swallow, the final test could not be performed.  She would have had a swallow study where they give her some luminescent fluid and watch her drink it on a floroscope.  The decision was made.  She would have a g-tube placed.  She was incapable of feeding by mouth.