Vomiting/GI Update

Conway is currently receiving his feeds over one hour. We had to slow down the rate a couple of weeks ago because the vomiting increased again. This has helped, but it seems, as usual, that it slowly creeps back in. Now we are waiting until he is upright for awhile and gets several good, productive coughs before we start a feed. Getting rid of the mucous first seems to help.

Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.

Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!