Procedure: Modified Barium Swallow Study

We've ruled out yet another medical condition with another test.  Today Auggie had a series of x-rays while swallowing barium mixed with sweet potato puree. He did not aspirate (bring it into his lungs) and he moved the food back into his throat the way he's supposed to.  So, thankfully there is no medical reason why he couldn't swallow food he just does not want to do it.  He did suck on a piece of apple today and seemed very happy. I think baby finger foods is the way to go with him - giving him control over what he eats so that he is less anxious. At this point he associates nursing, bottles and spoons with vomiting so it's no wonder he doesn't want to have anything to do with it.

Visit to the GI Doc

We're back from our GI appointment and we do not have the go ahead to wean, but the doctor recommended doing less hours on continuous feeds and larger bolus feeds after mealtimes and letting Auggie go 2-3 hours without any food to see if he gets hungry and takes more orally.  I'm skeptical that this will be enough to see a big difference but for now we will cut down to 15 hours continuous and see how he does with solids.

Bolus feeds and calories

We've had some success recently with bolus feeds (one large feeding as opposed to continuous drip) after adjusting the calories.  It seems that Auggie has a hard time with high calorie formula. I've been giving him breastmilk (20 cal/oz.) and 20 cal/oz. formula bolus and he has not vomitted.  I guess some babies just have a hard time processing rich food.  When he gets breastmilk via the tube his mood changes dramatically - he seems happier and full of energy. We give him about 50-60ml bolus in 30 minutes.  The bolus feeds are important because they will help his stomach stretch and prepare for "real" meals in the future.

Tube Free Day - some good and some bad news

The tube free day was cancelled because Auggie came down with a cold.  However, yesterday he pulled his tube out and we let him go tube free for 5 hours.  He started nursing and continues to do so today - Yay!  He also seemed so much happier with the tube out and he was vocalizing more.  He still refused to take a bottle but he did take the nipple in his mouth and played around with it.  We had no success with solids.  He still does not open his mouth but if food hits his lips he will smack his lips and get it into his mouth - I don't know if he actually swallows it or not because often times he will either gag and vomit after solids or he will just spit it out.

Weight Update

Auggie is almost 16 pounds - 15 lbs. 15 oz. today. This past week has been a good one - he gained 8 ounces.  If he continues at this rate he should be close to the 10th percentile in a couple of weeks.  He currently gets about 700ml of 25 cal/oz neocate in 24 hours.  He still vomits 3-4 times every day.

Big Weekend Event Coming Up: Tube Free for a Day!

Auggie will be going tube free for 8-10 hours this weekend (or as long as I can bear it) as we experiment with solids.  He has not done very well taking solids and I think it's because of that damn tube in his throat.  He smacks his lips when he sees us eating and he eagerly pulls his bowl towards him, but when I swipe his lips with some food and he sucks it in, he often vomits.  He does not open his mouth for a spoon or my finger, instead I have to get some on his lips and then he sucks it in.  I'm also hoping that he will nurse more when off the tube.  I will post a report card after the weekend.

New Tests: Eye Exam

The geneticist would like Auggie to have an eye exam to rule out posterior embryotoxon which is an eye condition associated with Alagille Syndrome.  The doctor thinks it's unlikely that he has this condition since it usually also is associated with liver problems and Auggie's liver is fine, but they want to rule it out.  Apparently the chromosome abnormality with this disease is at the G-level and will not show up on the chromosomal tabulation (we expect those results in 3 weeks).

The mucus comes from the tube!!!

On Monday we changed Auggie's tube back to a more basic type without a heavy anti clog bolus on the end that goes into his stomach. I had a feeling that his excessive vomiting was related to the tube he had - and lo and behold his vomiting has decreased since I changed the tube!! The doctors were dismissive and did not think that the tube itself was the issue...little do they know. You should have seen the tube they put in him after his MRI - the anti clog bolus was HUGE and the bottom was weighted - no wonder he was vomiting 7-8 times per day. Now with the new tube it's more like 3-4 times per day. It's still a 6 french but a much lighter 6 french!!

MRI Results

We've now heard back from the neurologist regarding the MRI and EEG - both look normal. However, on the MRI the radiologist noted that there was "mild prominence of the sylvian fissure" which means that the space between the temporal and frontal lobes is slightly larger than normal. The doctor did not think it was significant, but we have found medical studies that suggest a link between this so-called Enlarged Sylvian Fissure (ESF) condition and feeding disorders - it could help explain some of the issues we've been having. The EEG showed no signs of seizures which is great news. In 4 weeks we get the results from the genetic bloodwork. This last piece is important because it will help us rule out any chromosomal abnormalities that could also be causing the feeding disorder. Stay tuned!!