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Thursday, July 26, 2012

Drama night...and G-tube soon

whew....it's been busy around here lately.  ....ok, I'm lazy whenever I have the chance is more like it.  Anywho, Connor had an appointment with his pediatrician today.  He weighed in at 12.5 lbs and looks awesome.  He's sounding a bit gunky but we had dipped the binky in formula a few days before and I think he gets so excited that he probably does do a little aspirating....because, he has surgery on Wednesday (Aug. 1st), once again, we'll sacrifice some eating skills so as not to possibly compromise his health in any way...in other words, no binky dips and definitely no bottle efforts.  The good thing though is that once he gets the G-tube, After that, he shouldn't have another surgery until his cleft palate will be fixed or we remove the G-tube.  ......today, we also decided to up his formula.  I'll do increments in the next week or two until he is finally able to handle 40ml an hour at night and a bolus feed of 50ml in one hour and then off two hours.  Our pediatrician basically leaves the setting of him getting to these goals to me.  She agrees it should be slow so right now, I'm just upping him in 2ml increments each day to see how he handles it and then slowly moving his bolus feed in 15 minute increments (if you remember, he does 2 hours of 46ml during the day and then nothing for one hour and then we do this all day...machine on 2 hours, off 1 hour until he goes to bed at 8 and it's on until 7am).  So tomorrow, he'll get 48ml over 1 hour and 45 minutes and then I'll turn him back on an hour and 15 minutes after that.  ....It sounds elementary, a bit tedious, and terribly small amounts but for him, it's a big thing.  He's going to be 4 months on tuesday and weighs just over 12 lbs fully clothed and wet.  He looks great and he has days where he sounds like a million bucks but the minute we rush him, he''s going to let us know that he's not ready.  ....I asked today if he'd be able to have birthday cake when he turns one.  The pediatrician said maybe a small amount or possibly a taste.  God, I hope I am consistent and do all he needs to get to having some dang cake for his birthday.  I am fully aware that it's Connor's struggle and he may not be ready at that time but I also know that our family will be responsible for helping him every inch of the way.   ...I'll never quite understand why he's having to go through these things.  ....anywho, I have been a horrible nurse this week.  Granted, I'm a mom and learning as I go but seriously, I still need to make an appointment for the G_tube class< and a follow up for both his ears and his plastic surgeon>  i"m hoping these follow up appointments can land on the day after his G-tube surgery (crossing fingers).  Also, the other night, Connor pulled his tube out.  Pause for a second to grasp that by other night, I mean 230am.  It happened earlier than that evidenced by his soaking bed and me having complained about getting up earlier to soothe him, pat his back and get him to go back to sleep.  Oh and when I complained about getting up earlier I'd mentioned that he spit up quite a bit so placed a burp cloth under his head.  ....Sooooo, most likely, he'd been disconnected for atleast an hour.  ....anywho, I'm not a middle of the night party kind of girl.  I go to bed early and get up before the sun but the time in between is for sleep and God help you if you touch me unless there is something great happening or I can throw a baby in bed with me to cuddle.  With that, I had to wake up at 230am because Mikey let me know the tube came out and he needed me to put it back in.  Now, you'd think the loving mother in me would turn lights on, cuddle sweetly, kiss the hubby, and get to business.  Nope, I roll my eyes and say why can't you do it....not nice.  He's just nervous because the one time he did do it, the tube went in his nose and out his mouth.  Mikey's been useless ever since (exaggeration and just kidding...sorta....kidding  :))  Anywho, I basically, open one eye to not fully awake from blissful sleep, gather supplies, turn the tiny lamp on and push the tube into the wailing and precious baby before me.  I glare at the hubby because the sheets need changed and I've already been up several times in the night.  Connor is coughing and screaming and Sawyer makes a whimper....ugh....so I glare at the hubby who's now changing the sheets (bless him) and take Connor to the rocking chair to calm him down.  I'm doing my best to channel my chi to Connor because God help me, I'm practically asleep during all this chaos.  I'm thinking any minute he'll calm down, that the coughing is from having a fit and he's just being fussy.  ....Well, sure enough, Connor had the tube coiled in his mouth.  not in his nose and down to his tummy....he had it in his nose, taped nicely to his face and the dang tube was sort of smashed in his mouth and palate.  .......let's just say, I stopped glaring, turned on the light, and got it done correctly.  I rocked him back to sleep and then felt like a piece of crap and never did go back to sleep.    ................moral here, first, wake your butt up when performing something like placing a tube in anyone and second, this won't happen with the G-tube.  ...I'll blog all about the G-tube once I understand it better.  For now, I just know he won't have tape and a tube plastered to his adorable face so we can stop getting the "awwww....." looks, even though feeding times may be even more of a spectacle when we're out and about.  But, G-tube goes in his tummy, so he won't be able to just pull a tube out.  I know I connect him to a tube when he's eating and then disconnect when he's done.  Nice.
......well, so much more I could blab about but I keep being told I write too much (freaking friends!) ....so for now, adieu.  Prayers please for his little belly to expand and handle these new feeding schedules.

....these boys, are excited for their brother Tristan to come home soon! 

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