Sorry guys, I know my posts have been few and far between lately. It's not that I don't want to post, or don't have things to post about, but it's been finding the time to actually do it. Pretty much the same sentiment that every new Mom complains about....finding the time to do anything! And Mr. Stephen definitely has not given me the chance to do much of anything lately except for our daily walks when it's nice outside (thank goodness for the good weather as of late!!!). You see, Mr. Stephen has decided that he's now going to be Mr. Fussypants and pretty much cry all day and night when he's not sleeping. The first week we were home, it was really nerve wrecking because we thought something was really wrong. He never cried this much while in the NICU, so we figured he must be sick or in pain for some reason. We also never did the 12-hour nighttime dialysis in the NICU, so we were worried about that as well. But once we got past that first week and our first trip to the ER where everything turned out to be just fine, we realized I just birthed a fussy baby.
We have pretty much figured it out that it must some how be related to all his gas, reflux, and his formula. Or he's just plain colicy. I was a colic baby so Billy says it's my fault (don't worry, he's only kidding). But I'm not sure it's colic because it's not at the same time everyday. But who knows. A friend suggested gripe water to help and I'm just waiting for the nephrologist to clear it before I run out to Whole Foods and snatch some up.
So today at our weekly nephrology appointment, I asked if we could change his formula to something different to see if that helps. So we're going to switch it up from Enfamil Premium Infant to Enfamil GentleEase to see if that helps. the only downside is that based on Stephen's labs last week, we have to up his protein, which might counteract the chance in his formula. But we'll see. And based on his weight, 5.3 kilograms, we're going to up his daily dose of reflux medicine. Hopefully that will help as well.
Based on his labs, he also needs to get sodium added into his food (the pharmacy makes up a salt water sollution) and we need to have some additional labs done to ensure that his liver is functioning properly. I think I've mentioned this before that often times liver issues are a side effect of ARPKD. So fingers crossed we don't need to deal with that.
Oh, and one more thing. We officially found out that Bill is not a blood match for Stephen either. Bill's blood type is A negative; I'm A positive; and Stephen, of course, is O positive. It's pretty much par for the course that we wouldn't be a match, but I was really hoping that we could catch at least one break and Bill would be a match. But no such luck. So...we'll definitely be putting Stephen on the donor list as soon as he gets a bit closer to the correct height and weight. Luckily, we're just over half way there for both!