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Thursday, August 9, 2012

today.....

First thing..........Tristan is finally home!  YAY!!!  ....he went on and on about his dad and cousin, Shay, so that tells me he had an awesome time.  He took a gazillion pictures and I'm so glad he did.  He doesn't have enough of his dad's family.  ....and yes, I'm divorced from his dad but through the years we've remained somewhat friends and always respectful to one another.  It's been beyond a blessing. But I will add, sometimes it took effort on both our parts to respect the other.  His dad and I are very different people with different opinions.  I am certain Tristan is aware ....geez, he evaluated my kitchen last night because we have sooooooo much food...he knows we're different.  He also knows he's loved by all of us though and that's the point.  .........I'm a little sad because he's talking of wanting to go to Texas A&M, but hey, it's a good school.  It's just terribly far.  (makes me realize what I put my mom and dad through).  His grandpa lives out near that school and the military scholarships all but pay for everything (his dad has been active duty 20+ years now).  .....I guess I'll buy him a t-shirt or something to keep him focused when the lazy school bug inevitibly jumps up his butt. 
.....I've had a few people ask why we're afraid of the g-tube.  Honestly, it just seems so final.  It's the confession and admission that something is wrong with Connor.  Yes, we know he has problems.  I put my finger in his mouth and instead of him cupping his tongue as naturally as most of the world would, he gets excited, sometimes upset, chomps a bit and has his tongue sort of all over the place.  On occassion and working with him, he'll get it..  But you pop that finger or binky out of his mouth, place it back in his mouth, and his tongue starts going all over the place again.  ....I always thought the act of swallowing, eating, moving your tongue in a way that pushes food back was a natural and innate thing (the word is escaping me where it is like a heart beat and just does it without thought).  Anywho, these acts are learned.  From the first time your mama put you to a breast or bottle, you had to learn how to suck.  Breast feeding mamas probably really understand this because sometimes they have a difficult time coordinating their breasts with the baby's mouth.  ....mainly though, because I had a breast reduction years ago that cut most of my milk ducts, I've bottle fed my babies.  They drank slowly at first but I thought that was their size and not needing so much.  This is true, but it was also them learning to suck and swallow.    ...........Connor was born with that cleft palate that doesn't allow suction.  He has no roof to his mouth so he can't push his tongue up, hit something hard, and push back to swallow.  If you remember, I started feeding him from a haberman bottle that had a long nipple and I'd squeeze that so he could have formula.  At that point in his life, we had no idea that I was doing all of the work for him and he was swallowing merely because he couldn't breathe otherwise.  I do remember clicking sounds and also him having 'episodes' and they were most likely because he wasn't sure how to swallow here and there.   He was most likely aspirating (fluid going to his lungs) back then.  His reflux was aparent just because he'd have 'episodes' even after he'd been fed.  .....he was not even a full month and a half old when he had his first surgery (the jaw distraction).  I remember being so upset about him not getting off of the ventilator and 'developing' issues with feeding.  Looking back, he didn't get off of the ventilator most likely because he was simply so very young and because he had a problem from birth that was becoming worse and apparent because he was going through so much.  It is truly a miracle that he came home.    .......Connor still has no diagnosis outside of having Pierre Robin (born with receded jaw and cleft palate).  I'm positive he had some issues with swallowing from birth and am pretty confident we exasperated those problems from having that surgery so soon is little life.  Then again, his jaw was so far back that it obstructed his breathing and he needed that airway open.    ............him having the NJ tube was horrible.  The fact that it went into his intestines meant it had to be x-rayed for placement.  It was awful.  Connor has had more radiation in his young 4 months than most adults and alot of it is because he had the NJ tube.  ....when he went to the NG tube, it was scary because it meant I had to learn to place it.  I've conquered that battle and still hate doing it, but I am perfectly capable of the task.  The problem with the NG tube is that besides it easily being pulled out of his nose, it's a sort of magnet for mucus and because something is dangling down his throat, it's a natural obstruction that can hit his throat and sort of encourage reflux or gagging.  .......these tubes have been a blessing for Connor.  I hate them, get pissed about him having to have something taped to his face or jammed down his throat, but without them, he would not thrive.  ........the g tube will initially be as scary as the nj and ng tube were.  He will have a 'button' inserted in his stomach.  there will be a sort of cap on the outside of his stomach and a 'balloon' on the inside that I can fill with water to keep it from popping out.  With this button, after two weeks, we can connect and disconnect tubes when he needs nutriction or medicine.  There will be no more tape on his face or worries of him pulling the tube out.  I will no longer have to worry if I'm placing his tube in his stomach or lungs (a fear that has all but dissipated).  His issues with the mucus should lessen considerably.   .........the problems with the G tube are that he is older and it will hurt at first and whenever he hits it.  The first 2 weeks, he will have a tube that can not be disconnected from the 'button'.  The first 2 months, he can not be submerged in water from the hips up because the space between the inside of his stomach and the outside of his belly is open to the world, the germs, the water, everything (pause a minute and ingest that little bit of info because then you will get why we are scared of the g tube).  ..............There are benefits to the g tube but right now my mind just thinks of the time he'll have it and of the fact his little body is open to the germ world.   ............I've never been that mom that carries sanitizer and wipes everywhere.  My babies have been known to go to bed  with dirt under their nails.  And really, Sawyer and Tristan are healthy as can be.  ............Connor, of course, is too young to play like that but he's growing to where he should be able to experience more.  ..........We will have our first meeting with 'Early Intervention' the monday after his g-tube surgery and they will help determine where Connor is in his development.  They'll help us know how to keep him engaged and learning both phsically and mentally.  .....so, I hope I'm answering some of your questions dear peeps.  ...today is Connor's orthodontist appointment and we'll learn if he's a candidate for a prosthesis for his cleft palate.  We certainly hope it is something that would help him.  (with my sick nature, i hate continuously writing that my son needs help sucking and swallowing but seriously, its a big deal and he is considered special needs because he can not handle the most basic need of a human and that is awful)  ....anywho, orthodontist today and speech therapy tomorrow.  I will ask if they think we can do anything to further along his progress to where he won't need the g tube.  I already somewhat know the answer will be that he is doing great, thriving and learning....but he's got a long way to go.  I'll ask anyway because it'll make me feel better knowing that I am doing all I truly can.  ...I'll see the pediatrician next week and he'll also have a hearing test and follow up with his ENT (ear, nose and throat doc).
.........hope everyone is enjoying the summer.  Before long, it'll be getting cooler and some will miss this hot weather.  I'd say not me because I like snow and such but then again, we'll head into RSV and flu season and that is a topic for another day but it scares me to no end (had another description here but chose to be polite).  Just know, we do great.  We live each day as everyone else does.  We have tasks and do our best to accomplish them.  ...but I close my eyes at night and have fears....lots of them.   My mind wanders and I try to keep focused.   
...........ok, time to get everyone else's day started.  I think I'll make some scones, freeze some basil and take time to look at some of Tristan's gazillion pics before we're off to the craniofacial orthodontist.  Later, I got the movie "Blue Like Jazz" from red box for when the little ones are asleep.  I read the book and hope the movie is as good (heard it was great and challenges you spiritually).  ....enjoy your day and upcoming weekend.  loves and hugs to everyone.
Lucky not cooperating with Sawyer's "chill" time.

Preparing to binky/pigeon nipple dip.  This is thickened formula and because his last few attempts at taking a bottle were less than stellar, I am back to the basics and trying to coax his tongue into learning what to do.  I put my finger in this nipple, dip it in the formula and place it in his mouth while pushing the middle of his tongue.  Connor gets really happy and excited about all of this.  He starts to get upset a little when I push his tongue because he just wants to roll his tongue around the nipple.  I push to try to get his tongue to cup instead of go back.  If you tried to do what he does, I'd be hard pressed to find someone that could.  He has a motion where the back of his tonguesort of lifts while the front is still flat.  It would be an impressive parlor trick if it weren't so frustrating getting the basics down.

Connor happy as can be after we've been doing this a bit.  He doesn't always cup his tongue with each session.  Sometimes he'll get it and sometimes he just doesn't.  He can get a bit gunky after each session because his swallowing isn't exactly there either.  ....the g tube may help with this because there should be less mucus at the back of his throat.

Sawyer yapping away at breakfast.

Hehehe...he's a funny kid and pretty certain he'll actually be a lefty.

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