Posted By Posting
Oct 04, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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LOOONG rant about what ppl say...
Go and grab a drink because this is a long one!

Today we were at church having lunch and I had gotten Elyse's food all ready that I brought from home. DH wasn't there to sit with her, but my aunt was. She said i could go get in line and she would watch Elyse, but I told her that Elyse would start balling and then refuse to eat....which is what nearly always happens when I leave the immediate vicinity! Every Wed night I go to a weight watchers meeting and if she is eating dinner when i leave, she refuses all food and drink after I walk out the door bc she is so upset. I have to try and get her fed before that.

The high chair had wheels on it, so I took her with me in the line! LOL An elderly lady behind me asked why I didn't leave her at the table and I said bc she will stop eating she gets so upset. "children will eat when they are hungry" she said. "not this one," I said. "YES, she will" she said. i told her we had gone a full week with hardly a morsel going down her and she wasn't even sick at the time, "but i;m sure she was nibbling all day" she said. I told her she would not even touch junky foods and after that she stopped commenting.

The pedi has also told us before that kids will eat and drink when they need to, they won't starve themselves or dehydrate themselves. i'm sorry, but although that is true for the VAST majority of kids, if it were 100% true there wouldn't be kids in feeding tx, on tubes, or hospitalized for fluids bc they quit drinking for a couple days!

So sick of this. Elyse's growth has been good and we have not had to worry about her weight for a LONG time now. But we have worked extremely hard to keep it that way. We bend over backwards and spend tons of money keeping her in a variety of foods/drinks that we think she might takes a few bites of or sips of. We sing songs, use different plates, bowls, forks, spoons, cups, straws to keep things new bc she seems to satiate. We sit her in her high chair, regular chair, our lap, her little chair, or let her run around. We offer her several foods at a meal. We let her eat off our plate. We leave cups all over the house with juice or water or CIB or pedialyte or pediasure or milk or formula or soy milk or rice milk or any of those with strawberry or chocolate syrup added. We buy every snack food known to man. I make homemade stuff that I think she will like, and buy fresh produce, canned, and frozen to offer her. I serve the same things in a bunch of different ways. Maybe I am doing it all wrong. maybe I should do everything the same way every time. But we have tried that too.

i guess it boils down to, don't try to advise ppl until you have walked in their shoes or are at least educated in the matter!

BTW everyone, Elyse ate an ENTIRE egg for breakfast, PLUS...I had set out all her babyfood that she quit eating months ago to give to a friend today. She saw it on the counter and indicated she wanted it. I opened a container of blueberry/apple and she ate the whole thing on her own! crazy! She has never eaten a whole egg! SCORE!

Oct 04, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hugs to you girl! At church no less....I swear old women think they know it all when it comes to kids.
Oct 04, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Some people simply dont get it, it is so frustrating. Hugs!
Oct 04, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
poo poo on that lady! THey think they just know it all! Wonderful mommy award goes to you for all of the hard work you do to get her to eat! Poor baby! Congrats on eating this morning!!! WAHOO!
Oct 04, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Yay for the egg and the baby food! You are NOT doing it all wrong. In fact, I don't know what else you could possibly do. You are heroic! Can you come cook for me?
Oct 04, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Yeah, I've heard that one too many times as well, makes ya' just want to smack them doens't it...HUGS

Glad she ate a whole egg!!!! WHOOOHOOOO and a jar of food too, that is just fantastic.

Oct 04, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am so sorry you had to deal with that!!! Some people don't get it but I will never understand why anyone would proceed to argue with you over what your own child will or won't eat!! OHMY!!!

I also think the whole "kids will eat when they are hungry" is bull! That is right up there with "kids will eat what their bodies need". Yeah, right. Not my kids. Definitely not reflux kids.

Sending you ((HUGS)) and a HUGE pat on the back! You've done an awesome job getting Elyse this far and everyone here knows that it wasn't easy. Even if the little old church ladies don't get it. ;)
Oct 04, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I am very sorry ppl judge what they do not know and what they certainly do not live.

I count us all strong woman. Despite all the judgements we receive even at times from doctors, we keep going and do what is best for our lo's no matter who stands by our side.

It is certainly not easy and we are tested every step of the way. I am glad u stood your ground. You are a great Mommie and you have worked long and hard for your lo. Don't ever let anyone discount that. I have found many will try.

My neighbor happened to comment that it is so obviously visible that nothing is wrong with Meggy. She told me we are taking her to specialist and giving her a hard time for nothing. She said I am just a first time mom overreacting

The last few nights being nice fall weather and all we had our windows open. 4 neighbors so far including the one with the rude comment have apologized for misjudging as Meggy totaled 5> hours of crying all three nights and we didn't realize everyone could hear till we received apologies and were asked to keep our windows closed.

Oct 05, 2008
3blues21pink
Hmm, if that was true my son wouldn't have been hospitalized for 4 days last week due to his STOPPING EATING all on his own. He was sick and he just refused to eat. He wouldn't have any part of it. He got so dehydrated that they had to do a cut down to get an IV in. I dislike people that give advice that's not sought out, especially if they argue with you. I am almost to the point that I just say, "OK, you are right. Thank you" and move on. With Autism causing melt downs, issues, sensory issues, eating issues, allergies, speech issues and so on (and that's just with our oldest son), everyone has advice and I don't have the energy for it.
Oct 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
i Know sigh... :( i hear that one too! people just want to make you go crazy!

for example, coyle has a cold and an ear infection. i was telling the mother of the son who got him sick .. for the FOURTH time this year- no less- (the baby lives across the street so they play,but she never cleans) that we can't really afford this cold and now ear infection because of his weight. since he is so small and still has reflux getting sick just makes everything worse. she told me, quite rudely, that i "needed to stop worrying about his weight.. it is FINE".. um, whatever. he has not gained an ounce, not a single ounce, in FIVE weeks! and that they eat when they are hungry! not my baby, not many babies!

how can people be so insensitive!

i'm sorry this happened to you. I feel for you, trust me.. I too do the same and i am so dog tired at the end of the day dealing with the power struggle of my son not eating well. hugs
Oct 05, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
you're a great mommy :)
Oct 05, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
Thanks ladies, Elyse has been drinking water and juice well this weekend, and her eating has been pretty good too! I need to find a reliable way to get her to take her vitamins though. I normally put it in one ounce of formula in a bottle, but lately she has been refusing even one ounce so i will have to try juice i guess.
Check with your
doctor first!