Week 1, Day 4

Here is our mailing address (because it's always great to get mail) here at the Ronald McDonald House:
Sophia Thiessen
3540 Washington Ave
Evansville, IN 47714

We started this week a little shell-shocked from the suddenness of our arrival here, stress of not feeling 100% and uncertain of what to expect from our time here.  Now that we've gotten through most of the first week, we've been able to ask more questions and get a feel for what are reasonable expectations for progress.

Some things we're understanding better:
- The goal of our time here is to wean Sunshine off her tube.  This happens slowly and we may not get her 100% off by the end of these three weeks.  She could be getting 25% or 50% of her calories by mouth and the rest via her tube.  And that is OK.

- One of the ways to more quickly wean her from the tube is by having her drink high-calorie drinks like Pediasure.  Given our previous experience with her constant vomiting and my general dislike of Pediasure after that, I am not thrilled with this prospect.  But I know it will not last forever and it is helping get her off her tube, which is good.

- Right now, she is still taking in very little at each session.  Her max so far is 3oz (1.9oz of Pediasure and 1.1oz of pureed pears) in one session of eating.  That took her about 27 minutes.  While they are trying to increase her in-take volume, they are more concerned about training her in how to eat well.  Taking good bites, dealing with the food in the correct way, and closing her lips around a small straw to suck (which is harder than a large straw but it's better for her to learn the hard way first) are all important skills to be able to eat more.  This is important.

So, while the progress feels slow, she is definitely building some strong habits that will help her down the road.

As we move into the weekend, we are supposed to give her "therapy" feeding sessions 2 or 3 times each day and have her sit with us and do her normal nibbling while we eat.  We can keep track of how much she gets at each feeding, but we don't need to take it out of her tube feedings yet.  That means we don't keep up with the same rigorous schedule and calculating in-take quite as carefully.  Also, she can handle a few extra ounces (and extra calories) because her weight is so low.  Next week we'll start looking at taking out some of her tube feeds depending on how much she is taking by mouth.