Lillian drank so much milk yesterday that when I filed my daily report to our net coaches last night, they revised our plan for today.  They were so proud and impressed with Lillian’s progress, that they recommended as long as her digestion returned to normal (check) and she drank at least 300 mL of milk by 8:00 p.m. (she exceeded that yesterday), she didn’t need any tube feeds today.  Lillian met both criteria by noon today, so she’s tube free!

She’s been a little milk drinking machine.  Pretty much every moment she’s awake, she wants to drink her milk.  She stops to be burped and to sleep, but otherwise she’s all about the milk!  I’ve dreamed of the day I could hold her in my arms and look into her eyes as I fed her a bottle, just like I did with my nieces when they were babies.  Up until today, we’ve been feeding Lillian in a reclining chair to give her the proper alignment for eating and to enable her to easily see our faces.  But today I couldn’t resist holding her in my lap to give her the bottle.  She’s a squirmy little thing, interested in everything going on around her, and always kicking her legs, reaching her arms, turning her head, and arching her back to look different directions, so it wasn’t exactly as peaceful as I envisioned, but it was an amazing feeling nonetheless.

Dave and I packed her in the Ergo, walked to a nearby lunch spot, and I fed her the bottle in my lap while we waited for and then ate our lunches.  She slept in the Ergo during the walk home.  Again, we marveled at the world that has opened up for all of us by not be tied to the tube all day.  In our living room, we’ve had a white board with Lillian’s tube feeding schedule, my pumping schedule, and reminders of all the steps and calculations involved in feeding her by pump.  For four months, since Lillian’s been home from the hospital, that white board has dictated our daily schedule.  Leaving the house or having people over was a complicated math equation of how to shift things around to put together a couple hours disconnected from the pumps.  During our walk, Dave and I joked about burning that white board!

So far Lillian has lost four ounces of weight during her wean, so once she successfully transitions off the tube, hopefully the next step will be helping her increase her oral intake to the point where she starts gaining weight again.  Only then will we really know the wean was a success, but it’s sure feeling successful so far!

One thought on “Day 12–no tube!

  1. Hip Hip hurray 😀😀😀 I woke up this morning (also slept all night through) with a smile on my face for the first time in months and months! I have tried not to worry and fret and cry, but weakness snuck in at times. I thank God and my warrior daughter Leah and her supportive husband Dave 💜💜💜


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