Sara's Journey

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

2010-04-26T10:39:00.000-07:00

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...

2010-04-08T16:12:00.001-07:00

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

2010-04-06T01:50:00.000-07:00

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.

What does it feel like?

2010-03-04T18:13:00.001-08:00

Yesterday we had an appointment with Sara's feeding therapist. She had a baby with a tube herself a couple of years ago. She described to me how it felt to have a baby with a tube. I could not have agreed more. She said "I have tried to find a word to describe it and I came up with hell. But it is actually worse than hell. It consumes every single minute of your day and every ounce of your body."

I need to be strong for Sara. She is innocent and does not realize everything that goes on. But the guilt of knowing that she was probably too sensitive to be taken care out of the home. It is hard to understand why an otherwise perfectly healthy baby refused to take her bottle. I know I am taking her to be best clinic in the world. I also know from other moms that the process is not for wimps; that it is really hard for the mother. I am scared since I will be going by myself with Sara. I need to be strong.

It helps to know that we have people praying for us. It has also been very helpful to have met (by phone) two other moms here in the US that have gone through this. I also have a friend that has been able to come to the house and watched Sara for a couple of hours every couple of weeks. We were able to go out and have a Valentines lunch, our first time out without Sara since my mom left. I am also thankful for Ted, Jamie, and little Ethan visiting us on the weekends to brighten our days. A friend is the one that comes in when the whole world has gone out.

Wait, Watch, and Wonder

2010-02-26T17:41:00.000-08:00

The philosophy of the Austrian method consists of reducing Sara's tube feedings and then "wait, watch, and wonder" for her to get hungry and decide what / when she wants to eat.

According to the hospital's website:

"There are basically 2 main goals of the treatment:
- On the physical level (somatic approach): let her be hungry
- On the developmental level (psychological): increase autonomy

The understanding of the presenting problem from the child’s perspective (and not from what we think is important from an adult perspective) is the crucial prerequisite to find a path to the child’s personality and to estimate how to stimulate its sensory and motor abilities from a developmental point of view."

They have a success rate of 95% and have helped around 600 kids so far.

The method sounds very simple to follow but it will be hard as a mother to "let go" and let Sara decide when / what to eat; even if she is only taking minimal amounts of food at the beginning, loosing weight, and being fuzzy. The doctors will evaluate how to cut her tube feedings so that she is hungry but does not loose more than 10% of her body weight. Once we start the program I will only be able to feed her by tube at night so that she does not associate the tube with feeding anymore. The doctors will also observe my interactions with Sara to recommend ways in which I can develop dynamics for her to foster independence and autonomy which will also help her with her sense of autonomy when eating. If there are any medical reasons why Sara is not eating they would also evaluate and control those issues.

Sara will also participate in a food play therapy, speech therapy, and occupational therapy.

I will have to be patient, I will have to trust that Sara will figure out how to self regulate and satisfy her hunger. I am also trusting God and every time I have doubts I visualize Him taking care of us.

Hope

2010-02-24T04:11:00.000-08:00

I have been surfing the internet and reading about other kids that learned to eat by applying the Austrian method. I have even emailed and talked over the phone with moms that have gone through this. I have HOPE and knowing that we will be in Austria in 6 weeks keeps me going...

Here are some of the links to these success stories: (I have posted these links without the families' permission since I have not met them all but I hope they do not mind...)

http://www.franklyfrankie.com/

http://alexdeyoung.blogspot.com/2007_11_01_archive.html

http://lifeandtimesofstella.com/tube-weaning-resources-and-tips/

http://www.helpluciaeat.blogspot.com/

http://tovasibony.weebly.com/graz---day-26.html

http://andreamaeeat.weebly.com/graz-photos.html

http://corkrancapers.blogspot.com/2009_10_01_archive.html

http://www.help4oscar.com/

http://feedingfinn.weebly.com/

http://matthewourmiracle.weebly.com/latest-update.html

http://joshuaschallenge.weebly.com/joshs-blog.html

Sara is going to Austria

2010-02-22T19:30:00.000-08:00

Sara is 11 months old. She has had a feeding tube for a little over a month and she is being fed through this tube. She lost some weight at 9 months and we do not know why she would drink and less and less: maybe reflux, maybe aspiration, or maybe bad memories from the bottle? (she would reject the bottle but eat solids... at daycare they tried to put her on a schedule and was possibly force fed, previously at home she was fed by demand...) However, since she has had the tube she does not feel the need to eat and drink and will only take small amounts.

Sara needs to learn to eat like other children. Sara is going to Austria to a special clinic this April 2010. The doctors will reduce her tube feedings so that she will become hungry. The clinic also organizes activities so that she will be able to play with food. The idea is that she will be hungry and will decide when and what she wants to eat. This is a "leap of faith". She will be in control and hopefully will learn and enjoy to eat!

There is more information about this clinic at http://www.notube.at/ (University Children's Hospital Graz, Austria)

I will post more information as we get ready for our journey and while we are in Austria. Please pray for us and wish us luck!