Today completes Lillian’s first week without any tube feeds.  She passed her pre-wean weight yesterday and has been averaging over 20 grams of weight gain per day this week.  It’s too soon to tell if this rate of weight gain will keep up, but it’s a great start!  Lillian’s back to a weight percentile between 5-10% which is where she’s hovered most of the time she’s had her g-tube (dropping below the 5th percentile a couple of times).  Dave and I are hoping she can steadily gain enough weight over the next few months to jump up in the growth curve to where we think she’s more naturally supposed to be–probably around the 50th percentile, which is where she is for height.

The best part is that as Lillian’s been gaining weight over this past week, she also seems to be genuinely enjoying every moment of it.  That’s unlike before where in order to get Lillian to gain weight she had to suffer through discomfort and long hours hooked to the feeding pump.  But eating is pleasurable for her.  She loves drinking her bottles, and she gets so excited when she seems me getting out her spoon and baby food that she gets impatient with me as I button her bib on and can’t wait to grab the spoon and start chowing down.  There’s no worry about getting her to eat enough, no stress about how we’re going to stuff enough ounces in her.  In fact, one day this week she drank 950 mL in a 24 hour period–more than we were ever able to feed her through her tube and without any vomiting or crying!

After watching her suffer for so long, Dave and I are so thrilled to see her so happy.  The world is opening up to her in ways that were not possible before.  Over the past two days, she’s gone out to lunch twice, gone on a real hike, and gone to a block party.  At restaurants and the party, she loved checking out the crowds and eating her purees while her lunch mates ate their big person food.  On the hike, she loved looking at the scenery and watching people and dogs pass.  Dave and I once took Lillian on “hike” during the feeding tube days–here’s how it went:  We drove to a park 10 minutes from our house, walked on trail for about 10 minutes, then had to get back in the car to make it home for the next feed.  Dave and I were never envisioned being stay-home-all-the-time parents.  We wanted to show Lillian the world, and now we finally can.  She’s loving it!

2 thoughts on “Days 16 and 17–a whole new world

  1. So thrilled for all of us after months and months of praying and hoping for more for her little life 💜 This week is the happiest I’ve ever seen her 👶

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