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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

05-16-2006, 08:06 AM
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Senior Member
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Join Date: Oct 2005
Location: Oklahoma
Posts: 1,512
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I know a lot of us battle with feeding times. It is know to the point where it is driving me crazy. Will was taking all of his calories by mouth about 2 months ago. But when we had to add more because of his weight increase, he just shut down. Now we are lucky if he eats 2oz without giving us a fight. I know he can do it, he just doesn't seem to care to?? If he really wants to, he can chug the whole 4oz down in like 10 minutes, but this rarely happens. Most of the time it is a fight to get him to take 2oz, then we bolus the rest. I just don't get him sometimes?? I guess I am being impatient, but it is frustrating when you know he CAN do it, he just WON'T. I guess I will have to wait until he is older and I can bribe him, like eat your veggies and I will buy you a car. We will see, Sorry I just had to vent my feeding frustrations. Man, I wish I had his feeding woes, maybe then I could fit into my pre-pregnancy jeans again!! 
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Sabrina, mother to Will born a 24 weeker May 4, 2005. History of BPD, Trach August 2005, Gtube October 2005, ROP, Single Stage LTP 1/25/07 and trach free!!!! The happiest little boy who is the center of my world!!
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05-16-2006, 08:41 AM
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Member
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Join Date: Feb 2006
Location: Reading, PA
Posts: 212
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We are having the same problem and it is making me crazy. Aaron's new thing is that he will only eat in his sleep. So when he is sleeping we shove as much in his as we can. He use to eat like a champ, then one day he changed his mind. I have changed formulas and nipples so much its just silly.
I have tried to skip right to baby food and he has no interest in that either. I know exactly how you feel b/c I know he can do it.
Hang in there!! I am right with ya :-)
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Aaron James, born at 31 weeks, multiple airway issues
www.caringbridge.com/visit/aaronjameskunkle
All my love always.............
&
Paige Kristina 7/14/07
my wonderful reminder that life has to go on.....
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05-16-2006, 09:41 AM
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Senior Member
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Join Date: Jun 2005
Location: Minnesota
Posts: 4,727
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I think that feeding is probably the most frustrating thing with these darn kids. Maybe it is because I just can't understand why they don't just eat...I love to eat.  It is so frustrating....it'll come though-I don't have much to say other than I feel your pain and frustration.
Big hugs to you  All you can do is offer it to him and hope that he'll take it. Our dr is always uping what his "goal" should be for the day. We've always been about 100 mls off of what he says. I just ignore it-as long as Mitchell is gaining weight-I think he is fine. He is on nutren jr so he gets what he needs for nutrition as well as taking a vitamin.
Anyway, good luck 
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg
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05-16-2006, 09:41 AM
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Mentor
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Join Date: Aug 2005
Location: ct
Posts: 2,032
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Sabrina
I can so relate to what you are going thru!
Max is very fussy too. He only eats by mouth so it can be very stressful making sure he gets what he needs.
He sounds a lot like Will, he can do it but sometimes he just WONT
Sometimes it's teething, sometimes he is too busy and gets distracted it's always something!Now, he is going through some kind of growth spurt (I hope!!!) because he actually has been eating alot these last few days I am floored by it actually. But the last 16 months has been a battle. I had the best luck feeding him in his sleep too.
Good luck, I feel your pain
Maybe he'll find that thing he likes and will turn a corner. For Max it was Gerber puffs. He loves those things, not that a baby can exist on puffs alone, but if it were up to him that's all he would eat....
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Christina
mom to Max born 01.19.05 @ 24wks
LTR 03/22/2007
LTR 07/15/2008
decannulated, but uses CPAP while sleeping
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05-16-2006, 10:50 AM
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Join Date: Jan 2006
Location: Arizona
Posts: 687
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I wish Ericka would take it by mouth. She has not taken a bottle or anything by mouth since she had her trach done. One thing I still remember them telling me is be patient. Yea ok whatever is was I always said.  I hope things get better.
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Dee, Mother of Ericka. D.O.B. 12/11/03...preemie at 27 wks gestation, GTube on 07/02/04. Trached 03/22/05Fundoplication/Nissen in 2005. Decanned 10/17/07!!!!!!!!The little hero is the one who melts my heart every day for all her accomplishments.
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05-16-2006, 11:00 AM
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Member
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Join Date: Nov 2005
Location: Flushing Michigan
Posts: 115
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Alex did the same thing last December. He was only getting 68cc per feeding and he took that so well. Then they uped it to 90 and he would barley take 40cc's. It was so frusterating. It's like "come on thats not even your 68!" But anyways one day he decided to eat. And we have kept upping it and now he takes 150cc most of the time, and sometimes he takes up to 240. It goes by the day to, one day he'll eat 150 slowly, the next day he will chug 240 evey feeding. I don't get it. Alex also went through the sleeping issue too. In his sleep he would just drink and drink, but when he was awake it was constant fighting. Sometimes I think her burnt more calories crying than he even took in. Hang in there, he'll get the hang of it sooner or later! 
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Maureen- Mom to Alex born at 26 weeks (5/9/2005), O2 dependent at night, BPD, 100% Subglottic Stenosis. One failed CTR January 2008 awaiting an LTP in July 2008.
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05-16-2006, 01:28 PM
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Member
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Join Date: Dec 2003
Location: Massachusetts
Posts: 624
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Quote:
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Originally Posted by [b
Quote[/b] ] I think that feeding is probably the most frustrating thing with these darn kids
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It definately was for me too. Unfortunately, my Will had such bad reflux we went to G-J tube and continual feeds. It took a half hour to get him to eat a half jar of food, and his favorite was peas. His CP makes swallowing difficult too, but then he'd vomit it mostly up, so the scant 35 calories was not down to 20 - after a half hour!
I think the biggest reason that we parents are so frustrated is because feeding and eating are such basic needs. I was upset that I could not even provide this basic need for my child without problems. I could actually understand why some new moms get so upset when they have a hard time learning breast feeding
It takes a lot of patience, so hang in there. If he ate once, hopefully he'll get back there.
- betty
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mom to Will, age 14 - 33 weeker, IVH, PVL, now with severe CP, blindness, G-J tube, shunt, trach, baclofan pump - 24/7 care required  Also Mom to lovely Julianna, age 10
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