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Thread: CHERUBS Medical Expert Series: CDH & Feeding Issues (Dec 2-9, 2013)

  1. #21
    Alyssa was prescribed Periactin also. We used it for about a year and as she started to grow more we noticed that it was causing her mood swings. So the Dr. took her off of it. We've increased her Protein and use Duo Cal powder to add extra calories. She won't drink or eat thick things. She won't do milk shakes or peanut butter. She's a big fan of Poultry and eggs though! We saw the Gastro at Riley Children's in Carmel IN this afteroon and He looked at her weight and I had told him that we hadn't done night feeds or bolus in months because Alyssa was starting to eat more. Which I was happy with because I found night feeds and bolus to be counter productive in Alyssa's case. Yes she was getting the calories but she was becoming dependent on her tube again.

    The Gastro today, looked her over and said that since she has gained 2 lbs in the 3 weeks we've been down here that I am to weigh her once a week. If there is a loss then we talk about night feeds, if she continues to gain when we go back in 4 months we can discuss g-tube removal!!!!

    Alyssa~ 7/19/2004; LCDH- ECMO 11 days (VV 5 days)- (VA 6 days)-To date, the only Double ECMO Case at Helen DeVos Children's Hospital, Vent 19 days- Osc. Vent 1 day- Jet Vent 1 day- Oxygen 20 days. 64 days in the NICU, came home on NG tube, continuous drip feeds. 02/28/2005 Fundoplication and G-tube placed.

  2. #22
    I love the phrase "G-tube removal"!!!!!!! Hoping for the best for you guys!!!

  3. #23
    man i am sorry i missed this! lots of great advice that i will read over as we still have feeding issues with madeline. about once a week mmmy still gets puked on :P

  4. #24
    Carter puked every time we fed him. Every. Single. Time. It seemed like he would puke up everything we pumped into him with the NG tube, but he still gained weight, so something must have been staying down. Don't know how old Madeline is, but Carter had puking issues until recently (he's 5 years old). As long as she is gaining weight and the puking isn't causing any aversion to food, I wouldn't worry about it too much - except for the frequent laundry. She will probably grow out of it.

  5. #25
    Madelien is 15 months (yesteday!). She was a champion puker until her NG got pulled at 11 months. like exorcist style. and as we were feeding her solids, textures would send her off.

    She still has some texture issues, and she isn't very big, but she is growing. And she loves to eat, most days anyway. Oddly, even as she is gagging on something, she doesn't mind us sticking our fingers in her mouth to get it out, weirdo baby :P She still is likely to vomit if she gags on food, or if she has a cough. a well, the dog likes it.

  6. #26
    Hello Brad! I have a 4 month old cdh baby girl. Since having her diafraghmatic hernia repaired she has gone back in to surgery and had a hianal hernia reparied, her intestines once again pushed back down into the stomach area, a nissen surgery and a g-tube placed . I noticed a few nights ago that she has began gagging in her sleep and when she is awake. I was wondering if you possible had any insight to that. I was thinking it could possible be from her Nissen surgery but im just not sure. Any advice or insight would help please.

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