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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. |

03-19-2002, 11:56 AM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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I think feeding problems are probably the number one worry for a lot of preemies. I talk to lots of moms onthe Preemie Place message board and they (feeding problems) aren't limited to trached babies. Alli was always a "fussy eater"--she never had to even try to bottle feed until she was alomst 5 months old because she was intubated. She caught on to the bottle pretty quickly but was just never really interested. She gradually worked up to taking 4 oz at a time by bottle, but any change in her daily routine would ruin that day's feeding schedule. Just before she got the g tube in Dec '01 we were at the point where we had to feed her every 2 hours because she refused to take more than 2 oz at a time. It was very hard on all of us as she was 15 months old then!! Since getting the g tube she lost all interest in a bottle (and in fact throws it away from her if one is offered) but she is now finally showing an interest in mastering both a regular cup and a Avent sippy cup. It is slow going. I've heard that there is a good success rate with feeding clinics but it doesn't sound "right" for Alli just yet. You just have to hang in there. One thing I would suggest though is to stop after 30 minutes as we were told that the effort required to keep trying to bottle feed after that amount of time actually burns more calories than they take in! And that was with formula mixed to 30 calories! Deb
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Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
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03-19-2002, 10:21 PM
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Senior Member
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Join Date: Mar 2002
Location: Fort Collins CO
Posts: 1,540
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I so agree about quitting a feeding after 20 or 30 mins. We had tons of feeding problems with Celia and they told us not to let a feeding go on for any longer than 20 min. because then they start buring up the calories.
If he is not hungry enough to eat when he should ,to get all the calories he needs in a day ,maybe his calorie intake should be adjusted by feeding not by day. We had Celia's bottles all different so that every other bottle was of higher calories. Does that make scense? Good luck, hang in there!!! Gretchen
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http://mamazgirlz.blogspot.com/
Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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03-24-2002, 05:54 PM
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Administrator
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Join Date: Feb 2002
Location: Grafton, MA
Posts: 4,176
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I wanted to comment on the reconstruction. Tracheal reconstruction can usually be done anytime after 6 months of age. However, most doctors have their own guidelines (age and/or weight). Generally speaking, the bigger he is, the easier the surgery will be and the more likely the outcome will be positive. I would personally wait until at least age 2 (just my opinion, Aaron had his LTP at age 4, but his condition was complicated with BPD and O2 dependence). So, I would suggest being patient and not rushing things. Also, Dr. Cotton (or whoever ends up doing his surgery) will want to do a Ph probe test and will most likely treat him (with medication)for reflux even if the test is negative. This is because they want to be sure that no stomach acids get near his airway.
On the feeding issue, I would also encourage patience. Sounds like he is doing pretty well for a 27 weeker.
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Cindy - Mom to Aaron (age 19), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 19), spastic quad CP, moderate MR, seizure disorder; Anthony (age 19), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 6) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.
Home Page: http://www.bissells.com
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03-28-2002, 09:23 AM
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Hi Kathy,
I totally know what your going through. My son Jakob is 2 yrs.old(24 1/2 lbs.) and is only formula fed(pediasure). He's normal daily intake is aprox. 35-45 oz. What I do is have his food blended and put in every bottle feeding. He gags everytime I try to spoon feed solids. He's had
the Barium test done and also the food coloring done;he has micro-aspiration but doctor says
it's not significant to worry about it,but yet Jakob won't eat solids. I just keep trying hoping someday he'll eat for me. Sorry message was so long.
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