Tuesday, May 3, 2011

Cath Scheduled

There haven't been many updates because nothing changed lately with Jasiu. He is doing well and gaining weight but still not liking the bottle :( It is a constant struggle when feeding him because each feed we try first with the bottle (as we have from the beginning) and he will take 1/2 sometimes a whole ounce by mouth and sometimes he will squirm away from the bottle as if we're feeding him acid or something unbearable to eat. He then gets frustrated and starts getting hysterical and we have to calm him down before starting the tube feeding since we do gravity feeding and when he cries he pumps air out of the tube and nothing goes down. So there is a fine line between challenging Jasiu to take more by bottle and getting him upset from trying too much.

Aside from eating challenges we also have an evening challenge, colic. I'm convinced that it is colic because each day 7pm almost to the minute this baby turns from a peaceful little guy to a very irritable screaming one and it looks as if someone is twisting his insides and he cries and squirms and just nothing can console him. So from 7 pm to 11pm we try our hardest to rock the colic away.  He is on some one's (Joe and I switch off mostly) arms because this little guy is getting heavy to be rocked for 4 hours by one person. Sometimes he takes a brake for a bit and falls asleep but out of nowhere he screams out in pain. It's so heart braking to see as a parent and really freaks out visitors, so we tend not to invite people over (besides immediate family but even my dad can't handle it) over in the evening. It's not enough that this poor kid has endured so much already, this is another issue we have to deal with.  Some fellow heart mamas suggested I try gripe water and I started it on Monday. I ran it by the cardio and they gave their blessing to start something herbal and it shouldn't interfere with any of his medicines. I still can't believe I have to read out every ingredient to the nurse practitioner before placing anything in this baby's mouth. The Polish baby teas have chamomile, and apparently that may interfere with some medications and no can do, plus they don't want too much fluid in him that is not providing any real caloric value to him. He already gets plenty of water from the flush of the tube after each feeding.

Finally, yesterday I got a call from the hospital to schedule Jasiu's heart catheterization.  When the nurse introduced herself I felt a punch to my stomach from the anxiety. It's yet another procedure that he has to get anaesthesia for which makes me nervous. Since this will be a first of many, I'm extra nervous not sure what to expect and what the results will be. This is considered the pre Glenn cath meaning they are gathering data about the pressures and heart function to prepare for the second surgery which as of now will be sometime middle of June, which makes me happy and even more nervous, but that's going to be it's own post.  We will be going in on Monday May 23rd at 6:30am, first case of the day. Knowing what we know now, hospital time is hospital time and it may or may not happen as the first case, but were hoping.  It should be an outpatient procedure if they consider it diagnostic only, however if they find something that needs intervention, like ballooning the pulmonary arteries or any other actual procedure Jasiu will have to stay overnight. So they tell me be prepared to stay overnight... but hope for the best. We do have our cardio appointment on Thursday along with an echo, so we will get a glimpse at the heart function there as well.

In the meantime, I pray and ask for your prayers that Jasiu continues to stay healthy until the cath and the Glenn surgery.  This week Joe came down with a nasty cold/flue and is now wearing a mask around Jasiu and sleeping on the couch, since Jasiu sleeps in our room. However today, Jasiu napped in his crib for the first time today, I'm slowly going to get him to like that place and maybe just maybe I will get over my fears and have him sleep in his room across the hall instead of two feet away from my bed. Eventually he will outgrow the bassinet and then what am I going to do .. .move into Jasiu's room or move the crib to our room, I hope it doesn't get to that. He sleeps two feet away and we have two types of monitors on him.. one of those Angel Care one's that detects if there is movement (like breathing) and one with a day/night camera so I can see him in the dark. I'm not sure if I'm the only mom this freaked out, but I'm hoping to grow out of it or at least get more comfortable with it. As always I went off topic... please help us pray for Jasiu and his continued health.

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