Nothing New!

Not much new to report from here. We packed in five appointments in three days so far this week ... so hopefully we can enjoy the next two days off! :)

Only one of those appointments was for James and it was nothing major, just a pediatrician appointment, mostly just to review what's been going on as she doesn't get the information as quickly now that it has to come from Toronto. We have decided to pull the J-tube and go back to a G-tube and she was in agreement with our decision. For three nights we did not feed James and he slept peacefully. He did call us once or twice, but for no reason other then to make sure we're still around. The J-tube is not sitting well with him and by stopping the night feeds we are losing more feeds then what he might vomit up if on G-tube feeds. At the same time we will likely go back to bolus feeding instead of continous feeding. This means that we would give James four "meals" a day instead of having the pump run most of the day. Since James cannot tolerate his feeds too quickly that would mean that each "meal" will take approximately 1 hour and 45 minutes to pump into him. Previously we were unable to get the full volume that James required into him by doing bolus feeds, but at one point he was growing okay on what we were giving him so there wasn't much concern to meet the required volume. Since James is no longer growing full volume has now become a priority and we have worked to concentrate his formula so we can get the proper nutrition into him and at the same time keep him properly hydrated. We hope that he can go back to the bolus feeds as he had as this in our opinion is a more normal and natural way for a persons body to function. We have never cared for the idea of continous feeds because it just didn't seem proper to feed a person around the clock ... but then nothing with James (or most g-tube people) is normal so we had to give in when continous feeds seemed the only way to help him grow.

So that being said James is scheduled to have the tube change done on Monday. From there we will see what his stomach can handle and work on his feeding schedule so we feed him as minimal as possible at nights ... allowing his gut to rest and hopefully preventing him from vomitting up feeds in the mornings. We will have to start on continuous feeds but hope to work towards bolus feeds over time.

For the past week James' vomitting has been somewhat better. He is either not vomitting or vomitting less, especially less bile. He wakes up with quite the froggy in his throat and sometimes vomits up phlegm, other time the froggy just goes away with time. We try to teach him to cough it out of the way, but he won't cough for us ... likely fear that it will cause him to vomit. The discouraging news is that he's been requiring more oxygen lately to keep him stable. It also seems that he really can't handle the outside air. We had been looking forward to the heat leaving and to fall coming ... but even yesterday on a rather cool and breezy day he still would deSAT on us if we didn't crank up the oxygen while he was out there.

But yes, didn't I say not much happening here ... and really not much, just appointments and regular hectic life of having four kids, one being a (sort-of) newborn. Matthew is now three weeks old and weighed in at 8lbs 10oz on Monday. Matthew is a medicore kind of baby. He does sleep throughout the day so we do have peaceful times, but when awake he's either eating or being held. He goes into panic mode and screams up a storm about 30 seconds after being put down ... we've got some training to do in that area ... for now his adoring sisters are quite happy to hold him and keep him quiet. Thankfully I have these helpers, otherwise I'd would be complaining more about him ...or just simply going crazy listening to his screaming. He continues to like to feed frequently, altho this has gotten somewhat better ... he has cluster feeds and then goes for 3 hours ... and we're even gotten some longer 7-8 hour nighttime stretches a few times. They grow up so fast so we're trying to remember to cherish this time and not let our upsidedown lives get in the way.

Not an uncommon sight in the evenings. Matthew loves his tummy and loves to snuggle on a persons chest or shoulder, especially daddy's. Rob likes it too .... it's an excuse to snooze away the evening without feeling like he wasn't doing anything :)