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Feeding Tube Archives - wolfhirschhorn.org
Currently viewing the tag: "Feeding Tube"

One of the most beneficial things we can do as a group is help each other on tips and tricks around being a parent of a wolf-hirschhorn child. For us, one of the scariest things that we faced with Kendall is wondering how to effectively care for her feeding tube and Mic-key button. So, we […]

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Surgery Tomorrow!

September 20, 2011 by

Elijah has surgery tomorrow; this is the first surgery since Elijah came home from the NICU.  Elijah is getting a more permanent feeding tube, we are also going forward with the Nissen and LADD’s Procedure, as well as a hernia repair from the bladder exstrophy Elijah has at birth. There is a four day stay […]

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Arin feeding update

June 24, 2011 by

Well I am writing this posting after Arin and I have returned home from her first hospital admission for the start of her NG tube feedings. Her GI doc did not like how little she was actually taking in a day- enough to sustain life but not enough for good growth and development so he […]

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Elijah is just over 5 months now and weighs over 11lb. Elijah’s has a NJ tube for feeds – he’s had it since before he came home from the NICU, do to silent aspiration.  He is now ready for a more permanent feeding tube and it’s been suggested that we include a Nissen fudoplication and […]

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For those of you that have mastered the arts of the G-Tube, this information is probably old school. However, for those of you that are just venturing out into the feeding tube world, you might find this post helpful.

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Karly

April 10, 2010 by

hi everyone! my name is Kaylin and i am mom to Karly 22 month old with WHS. and mom to joseph 4 year old typical trouble maker. 🙂 sounds like my daughter has a lot of similar reflux issues and it is very common after a bolus feeding for her to want to vomit. she […]

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Reflux issues

April 9, 2010 by

I’m hoping another parent out there can help us out with this. Here is a brief background. Riley has had reflux issues since around 5-6 weeks after birth. Some arching, a little pain, and occasional vomiting. She would have a week where she would vomit once a day and then go a month or two […]

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Here’s Riley

March 12, 2010 by

Riley is our little 12 month old WHS angel. She is doing really well. She was 4 lbs, 5 oz and 16 3/4 in at birth. Now at 1 year, she is up to 13 lbs, 7 oz and 24 in, thanks to the help of her g-tube. Riley’s medical concerns include an ASD, strabismus […]

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Latest Update

February 17, 2010 by

Long time since last update. Kendall is doing great, has been healthy and we even got to take her on her first vacation!

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1 Year Later

May 29, 2009 by

One year after Kendall was diagnosed, we look back on all that happened during these 12 months…

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Winter 2009 Update

January 26, 2009 by

It’s been a while since I posted and I aways have the desire to do so, but not so much the time. Kendall has been doing so much in the past month or so. The year started out with a scare as she woke up on January 2nd with her feeding tube out of her […]

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Stuff…

August 6, 2008 by

Kendall had a cold this week and when she is sick, she has a tough time handling food, sleep or anything else for that matter. We have to keep her off solids almost completely as her coughing and gagging becomes too much for her with any texture in her mouth. The good news is that […]

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Kendall at 11 months

June 15, 2008 by

The result over the past few months has been beyond our expectation. Our goal was to get her to at least 16 lbs by her 1 year birthday.

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Our Findings

May 2, 2008 by

Well, back to Kendall… Our main focus with her right now is weight gain. With her feeding tube in, we have been trying to find the maximum feeding capacity for her.

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Kendall gets G-Tube

March 23, 2008 by

This past week was another episode of hospital stays and doctor visits. Kendall had a G-Tube inserted on Thursday afternoon and was released from the hospital on Saturday morning. I stayed with her as she recovered from the surgery. The G-Tube is a tube that is used to feed her directly to her stomach. This […]

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