35 days of no tube feedings: Netcoaching Success or Failure?

It has been 35 days of no tube feedings. Sara eats and drinks very little still: maybe she does not need much food!? she is so little!

She will usually have breakfast, then maybe a snack in the morning (then maybe not), then usually for lunch she just has a little milk, then maybe a snack after her nap (then maybe not), and then a few bites for dinner (then maybe not)... I guess you get the picture: I never know if she is going to eat or not. She always has her straw cup available and snacks in the area where she is playing. She knows where her snacks are and she goes there and munches on them if she feels like it.

Yesterday I was heating up dinner and she saw the noodles that I was preparing and she kept saying "more, more" to tell me that she wanted some. So we actually had dinner 30 minutes earlier because she was ready to eat... But she is not always hungry and she does not follow a schedule... So I never know... We just eat in front of her every meal and if she wants food she says "more" and if she is not interested she says "na na". She does not like to be spoon fed but will self feed with her hands directly from her tray.

Two weeks ago we all had a gastro bug and we all lost weight including Sara. But we did not have to give her any tube feeds because she managed to stay hydrated by drinking water, diluted formula, and soup. But it was a terrible week and I am glad that Grandma Linda was here with us.

Here is a list of foods that Sara has eaten (but of course not consistently, I never know what she is in the mood for): alfredo noodles with chicken, rice, chef boyardee noddles, raviolis, and meat balls, carrots, green beans, sweet peas, bananas, avocado, refried beans, black beans, mash potatoes, mayonaise, potato chips, cereal, muffins, sugar cookies, oreo cookies, tuna, tilapia, french fries, meringues, gerber puffs, whip cream, strawberries, blue berries, ice cream, cheetos, snap pea crisps, oatmeal cookies, granola bar, scramble eggs, apples, shreeded cheese, cheese slices, cheese in a can, pickles, french onion soup from panera, white and dark chocolate.

Every day I let her play with new foods so at least she gets used to the look, texture, smell, etc... and one day on her own maybe she'll decide to touch, then lick, and eventually bite, and swallow a new food.

I do not have evidence yet that her weight has stabilized but I can say for a fact that Sara's behavior towards food has changed since we stopped using the tube. Tube feedings mess up your appetite; who would want to eat if you are getting formula pumped in your stomach every couple of hours!? At this point I believe we should have never started her on tube feeds, I believe the doctors back in December where wrong wanting her to eat more when she was just probably eating enough for her size and needs... But things happen for a reason and I believe God has always been taking care of us all along.

Sara is an autonomous eater. (She controls what, when, how much to eat; and unlike most kids her parents have no say about this). Hopefully some day soon her autonomy towards food will be reflected on the scale with a weight gain! I believe in God, I believe in Miracles.

Sara eats very little but she eats...

Sara does a lot of things with food: she plays, smears, crushes, throws, chews, spits, and sometimes she swallows. She also loves to feed me and to offer food to our dog (Tiki). She sometimes also pretends to be feeding two of her toys: her tiger and her horsey.

Here is a list of foods that I've seen Sara actually swallow: carrots, avocado, tilapia fish, french onion soup, refried beans, mashed potatoes, french fries, rice, noodles, raviolis, eggs, bananas, shredded cheese, cheese slices, green beans, meatballs, hamburger meat, vienna sausages, whip cream, mayonnaise, butter, cocoa puff cereal, cherrios, chocolate, oreo cookies, crackers, yogurt melts, cheetos.

I've also seen her chew on muffins, broccoli, apples, oranges, strawberries, watermelon, chips, and pretzels but I do not believe that she has actually swallowed these.

She has her straw cup with pediasure available but if I'm drinking juice she sometimes takes little sips. She likes pineapple juice, mango juice, and kiwi juice.

I'm hoping that very soon I will be able to post with certainty that Sara has been able to maintain and stabilize her weight. I have faith in God and I trust that little Sara knows how much food she needs.

Treatment at Home

We have not used the tube for 14 days now~!!! Sara lost half a pound but her eating skills are improving and even if she eats very little she sometimes asks for food. (She has 4 words in her vocabulary: daddy, mama, hi, and more).

A couple of weeks before our treatment in Austria I emailed the Director of the Program to ask if there was something I could do in the meanwhile. She advised to cut one tube feed and let Sara get hungry and decide if she wanted to eat, Sara responded well. Then we decided to cut another tube feed and so on until all tube feeds were gone. We decided not to go to Austria but to follow their program and treatment from home and signed up for their netcoaching program instead. We email them videos of Sara eating and information about her weight and what she ate and they email us back with advise.

We are not allowed to offer her any food but we make food available to her and let her actively ask for food. We sit down as a family for breakfast, lunch, and dinner. Most of the times she participates in mealtimes and eats little pieces of food. We make eating fun by showing her that we enjoy eating but taking the pressure away from her. If she does not want to eat we respect her. She also always has snacks available to her at her reach all day (snacks in her stroller if we leave the house and by her toys if we are at home). We have removed most of her toys for now and we let her play with food instead; this is part of making food fun!

We are still hoping that Sara's weight will stabilize (that she definitely does not loose any more weight). I can not wait for the day that I will be able to report that she is gaining weight but the experts in Austria say that this could still take months. For now I am enjoying a baby that eats and is active and happy.

P.S. Thank you for those that were willing to help us by donating money for us to go to Austria. Since we are not actually having to travel to Austria I have cancelled the donations and you should be credited your money back in your account.