3 Day Tube Weaning Trial

The doctor approved another 3 day trial.  We're on day #3 and so far he has taken more by mouth than during the last 3 day trial, but not enough to think about pulling the tube out yet.  He has a gastric emptying study on Tuesday and a follow-up with the doc so we'll see how to proceed next.  I'm hoping for another trial just before Christmas. We've focused on fluids since that's waht he'll have to wean to.  We've tried neocate splash in different flavors, swedish rice valling, blueberry/carrot juice, water, and sugar water.  We've determined that he likes Swedish valling in a bottle with a newborn nipple with a hole cut into it and a tilty sippy cup.  Both of these make it easier to feed him since they have a built-in tilted feature.  I'll post a picture soon when I find the charger to my camera's battery pack!

Results: Eye Exam

Auggie had an eye exam yesterday to check for posterior embryotoxon - he does not have it.  This is great news - it just about rules out Alagille Syndrome.  That's a relief. 

Tube Weaning Trial Results

After 3 days of getting only 50% of his usual fluids and 25% of his usual calories, Auggie did take more by mouth on the 2nd and 3rd days, but it was negligible.  He took a bottle of Swedish valling - kind of like smooth runny porridge.  I had thickened it and cut a larger hole in a newborn nipple.  He took about 15ml of this on his third day.  He never really got cranky or showed us in other ways that he was hungry.  Now we regroup and discuss this with our doctors and wait find out how we should proceed next.  I have a feeling that this is going to be a long road....

It took 11 hours for him to get hungry!!

So, we had our first tube free day.  We turned his food off at 5 AM and pulled his tube out at noon after he had helped me rub some of the tape off.   The whole day I tempted him with food.  I set up a baby picnic to see if he would lead the way to the food he wanted to try.  I offered avocado, sweet potatoes, and pears and had three different bottles with water, formula and a berry flavored drink.  He wasn't really interested in anything. At nap time he did suck a couple of times on a bottle, sitting in my lap and looking out the window but that was it. Our speech therapist came over at 3:30 and by 4 PM he was finally showing signs of being hungry.  He took the bottle several times and sucked!!  He also licked his sweet potato covered lips many times and smacked his lips.  This was HUGE progress.  We're doing a 3 day trial starting tomorrow.  This time he will get 200ml of formula followed by 200 ml pedialtye starting at 5 PM and turning off at 5 AM.  After three days of this we hope that he will finally start to take more by mouth.  Our doctor has approved our trial - his main concern is that we watch out for signs of dehydration and that Auggie gets at least 400ml of fluid per 24 hours.

Tube Free Day scheduled for tomorrow

I am busy preparing bottles, sippy cups, pureed food and anything else I can think of getting into Auggie's mouth tomorrow.  We're turing his food off at 3 AM and taking his tube out in the morning and then not giving him anything all day. Hopefully he will at least take a few sips of water from a bottle - that would be a huge success!!  The though is that he is never hungry and thereore has never really taken much orally. Wish us luck - will report the results here later...

A word about Prevacid

Auggie had been on Prevacid for almost 6 months and vomiting 3-6 times daily.  Our new doctor told us to stop the Prevacid and lo and behold the vomiting has gone down to maybe 1-2 times a day!!  I am angry because I didn't think to ask if the Prevacid might be causing the vomiting .  The doctors make you so afraid of that nasty stomach acid.  However, it does not bother all babies and if the actual disorder is EE (eosinophilic esophagitis) and not true GERD then the Prevacid does not help anyway.  So, 6 months later we have extreme oral aversion due to excessive vomiting, refusal to nurse, and extremely tube dependent.  So, if your baby is on Prevacid and vomiting, ask your doctor about trying a different medication or going without.

New GI Doctor and feeding team

We had a 2nd opinion consultation with a GI doctor and now we have the go ahead to do a trial wean.  What a difference a doctor can make!!  We've also changed therapists and now have twice weekly in-home feeding therapy with a speech therapist.  Being at home allows us to do so many more things - more props, baths, different foods...We'll probaly start the trial wean in 1 week and we'll pull his tube out during the day and cut his fluids by almost 50%.  And our new doctor also took him off prevacid right away - turns out that prevacid can cause more vomiting....Now we're starting periactin and zantac as needed.