I want to start this post by asking you to look at the picture above and tell me if you can tell which child/children have feeding tubes in this picture. Can you tell? I will give you the answer at the end
This week is feeding tube awareness week. In honor of this week, each day I willbe posting facts about feeding tubes you might not even know!
So day 1 us tubie parents are supposed to tell why our kiddos have feeding tubes.
Evelyn got her tube due to the simple fact that she wouldn't eat. From birth she hasn't eaten. From the moment I gave her her very first feeding she would choke and gag. We bought every bottle on the market. Tried every formula. She just vomited and wouldn't eat. And she screamed. Oh how she screamed.
As time went on we took her to Children's around her 3rd birthday. They just told us she was stubborn and to start Carnation Instant breakfast. We did. Her eating deteriorated more. Within two days she realized she only wanted Carnation and she stopped eating all solid foods. We've never really got her back there, even after all that time.
She deteriorated. SHe started sleeping about 18 hours a day, was about 2+ years developmentally delayed, had almost no normal speech, was a skeleton (43" and 23 lbs), had zero energy and severe behavioral problems. On June 30th, 2009 she was diagnosed with Moderate Autism.
No doctor would help her. She stopped drinking Carnation. She was dying in front of our very eyes. We demanded a new doctor. No one would help us. We finally found Dr Martin and he was beyond scared and worried. He called Children's and two days later she had her feeding tube
It truly saved her life. She thrived. She went from 43" to 46". From 23 lbs to 38 lbs! Her autism symptoms lessened and lessened. Speech therapy and OT helped her tremendously. Her speech flourished. She got chub. She stopped sleeping so much and the best part was she caught up developmentally. Unfortunately the weight gain was short lived and she lost about 8-10 lbs since last summer. She is now about 9 months delayed. Much better than 3 years! SHe goes to a normal school with normal old kids.
We found out this past fall she has severe gastroparesis where her stomach just doesn't empty. That was why she would vomit. We also found out she had almost no motility in her esophagus meaning food could not propel down her "food hole". She also has chronic constipation and has what is called pseudo obstruction (aka bowel obstruction). Two weeks ago she got a J tube that goes straight into her intestines to bypass her stomach. She is now thriving! We've gone from about 8-12 oz of formula per day to 40. She should start to gain any time
The tube saved her life plain and simple. Without it, she wouldn't be here at all. Had she been born 100 years ago she would have probably died before she turned 4. We are so grateful for the tube and thank God each day we have that option. In many countries they still don't
Most children with feeding tubes don't look sick or disabled. Most look normal. Most you'd never know walking down the street. They play sports, go to gymnastics. Go to school and church. Live normal lives. They just eat a little differently.
Which brings me back to my question at the beginning of this post. Can you pick out which child or children has a feeding tube in this picture?
You might be surprised to know the answer.
The answer is all of them
:)
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