Please Don't.....

First, I want to touch base on last week's various appointments.  If you read my facebook account some of this may be straight up repeat for you.  ....anyway, 1st off we had the Early Intervention team stop by the house Monday morning.  For Connor, we had an administrative lady, a physical therapist, occupational therapist (speech) and a lady that deals with sign language.  In short, we decided he did not need physical therapy at this point. Though a chart may say he's behind, he's actually quite well physically for the amount of time he has spent in hospitals and recovering from each of his surgeries.  Yay!, Connor!!!!  Occupational therapy will come by once a month to see how he's doing and also to touch base with our current therapist.  He has quite a bit more experience and may be able to throw in some needed advice here and there..............the eye opener at this appointment was the signing lady (I am completely unsure of her title, so henceforth, she is the signing lady).  I basically asked advice which she had to be partial and also why on earth Connor would fail one test and pass the next.  She said in her experience, and she had a ton, that Connor would simply experience fluid problems because of his anatomy for some time and that she did believe because of the failing of some of his tests, he still really needed a sedated ABR test to see that his actual hearing past any basic fluid problems was ok.  She said she believed he'd have intermittent hearing loss because of constant fluid issues but that she felt she was there more because his problems would stem from how he spoke.  The anatomy of Connor's tongue and lack of palette will cause him so major issues.  Even with a prosthesis and eventual repair, Connor has an extremely high palette, his tongue doesn't seem to lift at all in the front and yet raises in the back, even swallow studies show a unique way of pushing fluids up into his nasal cavity....Even with repairs and clipping of Connor's tongue, he'll most likely have a rough go at learning to speak well.  Of course, time will tell if he beats these odds but a look in his mouth says to prepare now and give him any advantage.  Even the anatomy of his gums are different and as teeth enter, we'll go exploring that route at that time.   .................Later that same day, Connor had his swallow study.  I brought along the haberman bottle that I've taken to feeding him with and asked that he be tested with that.  I also asked if we could push his seat in a more reclined position.  When he's tested, he sits in a sort of beltless car seat.  There is an xray machine facing towards the side of his face and a speech therapist feeds him one ounce of barium formula that is scene through the x-ray.  She does this at different thicknesses and a doctor and technician (along with the speech therapist) record and watch the video each thickness to see how Connor swallows each.....I still felt that Connor wasn't really seated reclined enough to mimic a regular feed, but it is what it is.  .....Connor showed what is called silent aspiration with thin fluids and showed that he was handling nectar thick(thicker than standard formula) and then honey thick (even thicker than nectar).  My problem here is I'm positive he's aspirating the nectar thick.  I know this because in one week's time, he went from being perfectly healthy while I was feeding him honey thick to horrible sounding lungs from one week of nectar thick (per the expert's instructions)..  ...Well, the day came for speech therapy.  I woke up needing to be in the bathroom from being sick.  Both ends, mind you (TMI, I know).  Anyway, armed with the notebook I keep and a page of notes, Mikey went to Connor's appointment.  He was a little nervous because he's normally watching Sawyer when I go to these appointments, so this was a first.  And, my control freak self was nervous because I felt there was a ton to discuss.  ....Anywho, Mikey let her know what I felt about his aspirating and the therapist came up with a plan.  She wrote it down for me.  I'd feed him for 5 minutes on nectar thick, 10 minutes on honey thick and then give the rest through his g tube.  I was to find out amounts from the pediatrician....ummm, NO.   ......I got better, and went to the pediatrician's office later that day.  Connor ended up gaining one whole pound  (14lbs, 6oz.) so that started the visit nicely....after our normal chit chat and general care talk (he had a little eczema on his legs), we took a look at the feeding plan.  She had taken the time to look at Connor's swallow study notes and was also concerned about how bad Connor sounded.  Like I said, one week and he all of a sudden was needing me to suction him.....long story short, we made the decision to stick with feeding Connor honey thick formula.  I'd stick with the plan to get him 900mo (30 ounces, not including thickening) a day.  I'd continue with the 5 bottles during the day and then give any extra calories at night.  I was also instructed that the minute I believed Connor was getting worse or he started to get a temperature to bring him into her office because his lungs sounded horrible.  And when I say I started suctioning, we're talking the hospital grade suction machine.  I'm doing this atleast 3 times a day and getting a ton of mucus from Connor.....and right now, it's the reason I've been up since 1am.  During this weekend, Connor's 'snuffles' have made him to where he can hardly breathe for a bottle.  We've gone from me making him a 5 oz bottle (that is about 6.5 oz by the time it's thickened) and him drinking all of that, to right now he may get a ounce or two in 20 minutes time.  I've tried three different kinds of bottles, different nipples.....he just can't breathe right now, so I've had to resort to just giving him some of the bottle and then he's been handling bolous feeds of 120ml an hour (or 4 ounces in an hour).  ...also, I'm not really sure if I should even be giving him what he is taking in the bottle because not only is he trying to breathe as he's swallowing (which causes aspiration concerns) but his body after about 5 minutes starts stiffening and arching.  He's having a tough time, gets totally and physically agitated but screams for the bottle because he is physically hungry  ...what to do?  feed him a bottle because he is hungry and you don't want him to develop oral aversion or tube feed because he's definitely not aspirating but then you're taking away hunger and leading him away from knowing he needs to take nutrition through the mouth.,....then again, he refluxes, so tube feeding may actually introduce more aspirating because he tends to aspirate the reflux...UGH!,,,,also, as a sort of side here, we tried feeding him rice cereal at his speech therapy and also once at home.  That deserves it's own post.  It was cute initially, as all babies are with their first time eating.  Then, it was just a train wreck of him having no clue what to do with the stuff, sucking it in because he thought it was choking him, and then not wanting anything to do with a spoon near his mouth.  ......trust me, it wasn't cool.
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..............this is the point where I'm going to make sense for my bog post title.  ...........I guess I'm increasingly accepting that Connor does have issues beyond just a quick fix surgery.  ....yeah, it's taken some time beyond the obvious.  Judge me when you walk in my shoes.  ........Anyway, I suppose because I'm more accepting that Connor does have some extra or "special" needs that I'm becoming increasingly aware or shall I say, offended by comments I'm getting.  .........Most everyone in this world is nothing but supportive to our family and understands we are going through hard things.  There isn't a soul I know that doesn't wish our troubles were gone and in that, not a friend or family member (ok, maybe an idiot or two but we all seem to be deemed one or two idiots....anywho,) that would openly want to offend us.  BUT, it's been happening.  ............here is this posts disclaimer because I have a knack for offending someone out there in being blatantly honest....well, get over yourself and just see this for what it is.  This is a small education on what someone with a special needs child would appreciate you not saying (and trust me it's not even the tip of the iceberg...it's just one or two basics).  ..........ok, with that I'd ask you to Please not compare your child to mine.  I've had to teach myself not to compare Connor to Sawyer and Tristan and every other baby in the world.  God made us each unique so damn the charts.  Connor is not average anything.  And that makes him just as special as my other kids that were either perfectly on scale or my daughter that was also off the charts..  ..........Connor was not a preemie.  Yes, he's small.  He can't freaking eat.  He refluxes.  He's prescribed 4 medications just to keep what he does eat where it is supposed to be.  He has a med if he doesn't poop.  He has a med for "motility" so the formula is processed.  He has a med to keep acids down  I chart his input and output.  If I did half as good in school, I'd be a dang doctor now.  Bottom line, Connor was not a preemie...Please don't compare him to one.    ...............and I'm just going to hit my all time hated one and this'll be it for now.  Please don't say "do you think if they just treated him normal, he'd be fine".  Now I've heard this one more than once.  I usually just get really quiet.  ...not a soul that has said this meant a bad thing and really, they're just wishing this for Connor.  But, as I'm quiet, I also want to scream at the top of my lungs a few terribly explicit things.  For instance, I'd love to say "You are a f#$king genius!".  Why, you ask?  Because I've tried every damn bottle made on mankind.  We probably own every nipple out there.  I have every size bottle there is, I have a bottle you can squeeze, bottles that only fit certain kinds of nipples, vented at the bottom, vented at the top, not vented......I have long nipples, short nipples, slow, medium, and fast flow nipples, wide nipples, compression nipples, squeeze nipples........you name it, we've tried it.  Not one standard nipple works, no bigger cut holes work, the compression nipple may work one minute and the next minute he's getting too much or not enough or just doesn't want it.....the next time it seems if I push a little more in his mouth with the extra long haberman nipple, that is working and then two damn seconds later his face turns red or his body contorts or we've got a fucking situation of epic amounts of formula coming out of his nose and mouth.  PURE FREAKING GENIUS!  Let's treat him like a normal kid.  ..............so, PLEASE, don't state the damn obvious.  I'd love to go grab a bottle from the local wal-mart, put some formula in it and feed him.  Better yet, you holier than thou mothers that think breast is best....well, I think it's great too but I'd kill him if I relied on that.  Better yet, you stick a normal bottle with normal formula and torture him into a slow death.  ...........I HATE the G tube!  HATE IT!!!!  I HATE carrying that damn back pack.  I HATE figuring out formulas of what he needs.  I HATE thickeners.  I can not stand the process of making thickener.  The nasty dust of xanthun gum mixed with alot of water looks like I store a small vat of snot in my fridge.  It is disgusting.....Better yet, I HATE that I can't give my son basic nutrition.  I hate the thought that I'm possibly hurting him when I feed him.  I hate that when I have to use the g tube that I now have to worry about him aspirating his thin liquid reflux.  ........There is not an easy thing about any of this.  I am very good at a game face.  Ninety nine times out of a hundred you will think me perfectly happy, easily conforming to my current life, on top of things...even possibly thriving with the chaos.  ..............sometimes this is the case, but usually I'm just swallowing a hard pill and trying to keep myself and the rest of my family "normal".  I'm trying my best to get Connor as "normal" as I am able to.   So, with all my ranting on this post, please just leave the freaking word "NORMAL" somewhere else.

....Current events

.....and can I just start off by saying, it's hard coming up with a blog post title.  ....there, now on with the events.

I did end up calling that nurse care manager and am feeling better for having done so.  We hashed out details of Connor's care.  She spoke with Connor's dietitian (who knew he had one?) and she gave us a formula for a 26 calorie formula and 900ml a day (30 ounces or 36 ounces, thickened by bottle).  Thickener that we use expands the formula.  Also, she tried to get Connor a local vision test sooner but the doctor is popular here and booked until January so we'll stick with our November appointment at Primary's.....I discussed quite a bit with Cathi, our nurse care manager.  She will start being someone I speak with weekly to help iron out any details of the week or any new questions we may have.  She was awesome.  I called in the morning, we spoke for about 30 minutes on various questions, insurance needs, calorie needs, the future, etc.  She called that same day and answered each question I had, got us extra formula to be sent to the house and is working on getting us approved for a better thickening agent that doesn't expand so much and is covered by insurance...she's working on making us a definite feeding plan (but has to wait for information from today's visits) and did a little mama-mental therapy from someone who's already been through everything we're dealing with.  Very nice.
Today, early intervention will have various people meeting at our house to discuss a plan on physical therapy, cognitive therapy and hearing/speech therapies.  Connor then has an appointment at Primary's for another swallow study.  We're a little worried about aspiration but sure hoping we're done with this particular worry.  So much is riding on this swallow study.  It could really change up his diet but with that, it may introduce more reflux issues.  ....I'm also a bit worried because since introducing a little bit less of a thick formula (from honey/pudding thick to nectar thick), Connor has developed what we hope is just a cold.  He's had quite a bit of mucus and formula draining from his nose and has developed a cough that we hear more than anything, when he's lying down.  This could be signs of aspiration but...it could just be a cold.  We should know that answer today.
Tomorrow, Connor has speech therapy and then a visit with the pediatrician.  I sure hope he's gained weight this week.  Once again, he looks bigger to me.  He is truly filling out his 3 to 6 month clothes and is looking less drowned out in the 6 to 9 month outfits.  As always, his eyes look so clear and he seems mostly happy.
I wanted to touch base that I did in fact go to church for the first time in 3 years this past Sunday.  Right now, it's a majorly sensitive subject that I may want to expand on tomorrow but not today.  I thought I was over some issues but I am not. ......and no worries over my soul.  I never felt God left me or that Christ was out of the picture completely....I just have unresolved issues and I happen to believe I am known more completely by God than anyone, so I'm going to be fine.  In believing this way, I also think my loved ones are all covered by God too.  To me, each and every person in this world has their own story and God knows it completely.  For that reason, I know in my heart not to preach to others....I add this only because recent events in my home had me ready to ban people out of my life.....I am a great believer in leading by example and trying really hard to keep your mouth shut unless it's kindness or simply a provoking thought planted for a positive outcome.  I screw this theory myself constantly but I try.  Others in this world believe their way is the only way....hogwash!, don't try to do God's job.  As I understand him/her, he/she's quite good at knowing us and I find alot of comfort in that.  .....so, no preaching to me or my family.  Prayers are great.  Kind thoughts are wonderful.  Telling me or my loved ones how to conduct our lives in any way, not so good....please find your nearest exit.
..........anywho, I've had a wonderful week so far.  I have great hopes for the next two days and am expecting a fun weekend.  The hubby is off to Moab with some great friends and good times.  Well deserved time for him and I hope he has a blast.  I have a friend or two coming by to visit me (and if you want to visit just let me know!) and I am plan on getting out and visiting a friend myself.  ......I had a few precious hours to myself yesterday and feel recharged.  ..........and Tristan has his very first interview today!!!!  He needs and wants a job so I sure wish him luck!!!!  (I think Tristan is a bit like me in that he's going to thrive on a full schedule....he's a smart cookie and hopefully will nail the interview.)

constant sniffles...poor guy

but what a cute squishy face! 

yep....still cute.

lol....adorable little one has been showing signs of jealousy but has been teething too.

it ain't easy being a Soybean.

yep...no smile for me today!  (insert sound of soup guy from Seinfeld show)

Tristan....in the white jeans.  :D  he looks good and yet we question when we'll be buying some dye for these pants to cover up the stains.    ....I sure hope he gets this job today.  Plus, it's subway.  We loooooove subway.  And it's pretty close to home....so, nice.

 

P.S.   ......I've been told by a few that you try to post comments and that blogger doesn't take them.  I tried to change some settings so hopefully the comments can be left now.  Goodness knows, I like knowing that someone is reading this...and definitely hope someone dealing with our same issues is getting something from all of this.  :D



the nurse care manager

Insomnia so sucks.  It's like you can feel your life force leaving you if you do this enough.  ...I try not to worry but as many a friend knows, it's what we do when we have babies.  ..........I do not always re-read what I've written on this blog so sometimes forget what I've previously written.  I know it's been about a week but I'm pretty sure I've gone on and on about I've been feeding Connor by bottle.  I am proud of this fact as his mom and as his chief medical cheerleader. .............I'm not sure if I touched base about genetics but he had that appointment this past Tuesday and basically his genetics found Connor to be a 'normal boy'.  Now, I don't understand genetics too much so can only explain that the doctor said this means when Connor developed in utero that one problem led to another and another leading to the physical syndrome of Pierre Robin.  Now, if he's found to have additional abnormalities, I let the geneticist know and he can further test specific genes to give us a better diagnosis.  Thus, he wants his eyes tested for near sightedness to rule out a syndrome known as Sticklers.  .....that test is in November but after the pediatrician's appointment on thursday, this test should be moved up much sooner when she calls to reschedule with her doctor authority.  .........I'm not even ready to evaluate what else can be going on with Connor.  Seriously, it's 1am meaning I've slept a total of 3 hours this night.  Yesterday, I slept a whopping 5 hours having woke up several times during that time.
Tonight I'm up because Connor lost weight this past week.  He lost alot when you consider ounces is a huge deal for him.  He lost 6 ounces in one week.  If he keeps this up, he'll be off the general scale for a growth curve.  I'm pretty certain he's already hitting close to the damn diagnosis of failure-to-thrive.
Now, I tittled this post the nurse care manager because I've avoided this person.  A nurse care manager is appointed to those kids that have complex special needs.  Connor is considered/evaluated as a special needs level 3 kid.  As I know it, we can probably go right out and get the special needs parking pass, apply for oodles of help and possible benefits because special needs 3 means you are definitely disabled and need more than the average sick-o.  (my disclaimer this post needs to be if you're special needs sensitive and are going to get all hung up on wording or emotions stop reading now)  .....well, to say we have ignored this diagnosis of Connor being special needs is an understatement.  We don't like seeing it in print and we don't like it said out loud.  Part of us feels like if you can't walk, then you're special needs.  Otherwise, your are whining and can park like everyone else, pay the extra fee like everyone else and basically, accept your additional faults and respect those that truly have 'special needs'.   ...obviously, I'm generalizing alot here because there are severe disabilities that I do believe fit in this category but come on, if you are younger and can physically work on your pain to improve yourself, I believe you should not strain the 'special needs' system.  ......also, I feel like I'm very insensitive to some mental disabilities but I openly admit I don't understand how debilitating these can be.  ..........the point is, I feel like I am admitting defeat.  Connor can not eat what he needs to get basic nutrition.  He has a swallow study this week that will let us know if he has completely stopped aspirating and we can possibly move into an array of atleast getting Connor to try more than just a thickened formula by mouth.  .......regardless, Connor has the g tube and part of me has fought him having it from the beginning.  ........I want him to take the bottle and goodness knows, he wants the bottle, but his body is a f#@ing ass to him.  .......yeah, I WAS in the military, my thoughts can take on a sailor's tongue in an instant so bear with me.  .........I felt like Connor was doing soooooooo good.  He was drinking the amount I was told he needed so why does he even need the g tube?!  I held no one in some bad esteem because I put him through the surgery of getting the g tube...I was just dang happy he was taking a bottle.  He has been so very happy having a bottle.  It is beyond obvious he likes the act of taking formula by mouth.  ..........the problem is, he works so hard to take what's in the bottle, that he is expending precious calories.  His formula is a concoction of additional formula added to his mix for additional calories and then a thickening agent so that he doesn't aspirate.  The problem's been that by the time I add additional formula and thickener, his formula expands and he's actually getting less calories each bottle.  So when I've been saying he's had all 24 ounces today by bottle...he may have only gotten about 18 ounces because also using the haberman bottle, the formula foams as it enters the nipple and beyond the lost calories through thickening and expanding, he always leaves about an ounce or less in each bottle he has.  He's also lost calories simply by drinking the bottle and then of course any spitting up.  ............When Connor was simply tube fed, no bottles, he received 4 bolous feeds of 100 ml an hour and then 40 ml an hour continuous over night for 11 hours.  This meant each day Connor got 840 ml.  His diet has remained the same as far as him needing that amount of formula.  .........but when he got the g tube, he couldn't handle 40 ml a night without some major gagging on reflux.  Tonight, I have him moved up from 15ml an hour to 18ml an hour and so far, he hasn't woke up gagging/choking.  ............I've not even bothered feeding him through the tube during the day because I've been pushing bottles.  This is a good thing but it's beyond apparent he's not getting what he needs through this method and plus, i've been informed that his bottles need to be thinned out a bit more and the problem with this is that if I thin them out, he'll reflux more.
................in comes the realization that I need help.  I've done just fine taking care of Connor and all of his appointments and needs until now.  This is beyond disheartening to admit, what I'm doing isn't working.  His doctor's have given me home cell numbers but obviously, I do not want to abuse these wonderful people in their personal lives.  ........I can not stress enough how wonderful Connor's pediatrician has been.  But, she has two babies of her own.  She's active with her family and her church.  She insists I'm fine to call her anytime but I can not continue to call her anytime.  It's wonderful I can but as in all things, just because you can doesn't mean you should.  .............thus, the nurse care manager.  As I've been told (and I have met this very nice lady), she can arrange appointments, stay on top of our schedule and assist in making sure Connor gets all of his care needs met.  She is a go to person when I have questions about his needs, she can get a fast track to any answers we're seeking at any given time, and she can even get our prescription needs met.  She's essentially someone that can be my 'right hand man'.  She can even be my 'life-line' when I need to gripe. ...........The nurse care manager is available 24/7 and must respond to any of my needs or questions within 24 hours.  She  is a nice older woman and had a son herself that was special needs.  .........I've avoided her like the plague so know nothing too personal about her.  BUT, she's been mentioned to me several times as in "don't forget Cathy is there whenever you need anything'.   .............so, here and now, I've made the decision I need the nurse care manager.  I've got to call this Cathy lady in the morning.  I need to vent about my wanting Connor on a damn bottle so please figure out a formula that allows him more calories per bottle.  I need to say I hate the g tube.  While other tubie moms proudly show off their children's tubes, I sort of shun our son's because I want him to freaking not need it......and I want a f#@king plan.  If I need to hook him to a damn machine to feed him more in the day....give me a more concrete plan of these are the steps we're taking to get him learning to do things on his own.  .......I'm proud that I have stepped up and made decisions for Connor but sometimes I feel like I'm conducting an orchestra when I have absolutely no training at all.  I'm learning as I go and lately, I feel like my orchestra is falling apart and I'm trying to keep everything together and instead ..........   you probably get the point here.
..........I obviously need this nurse care manager.  She's been a nurse for over 30 years and has dealt with special needs in her own home.  She is apparently a respected professional and only is given a handful of patients so she can truly be out our beck and call.  .............I hate to admit I need her but part of me is thinking it's time to get this help.  What bugs me is in doing this am I admitting Connor is special needs? .....lately, I've been trying to look at Connor from a stranger's view.  He's small for a full term baby that was born at 7lbs and 14 ozs and is now past 5 months old.  He's got a faint tint under his eyes like he's tired.  He can be soooooo happy but he can be a screamer too.  Sometimes when I pick him up, it seems like his bones are cracking.  Sometimes he obviously hears us, sometimes not so much.  I think he sees just fine but I stare at his eyes and wonder if their are signs to being near sighted, or having glaucoma or retinal detachment.  I stare at his chin and wonder if it's starting to recede back.  I watch him during his bottles and notice him munching but also that he is very much beginning to suck too.  I stare at his fingers and wonder if they're exceptionally long.  I feel his spine and wonder if it's straight.  I stare at his head and feel the bumps and soft spot and wonder why it's considered small and if something is wrong.  I look at his ears and wonder if they point to another problem. .........It's obsessive.  It's crazy.  It's me just wanting to know everything right now and wanting to fix anything and everything.

..........I've felt especially protective and cuddly with Sawyer lately too.  He's been teething and also starting to say Mama.  We all love the Mama part and love when our babies want to cuddle more.  ....I soo worry about one of my kids thinking they're not as important as the other.  ........Even with Tristan at 17, I don't want him thinking he's not  just as important as my littlest ones.

............I need the nurse care manager.  I need a little less to worry about and I need some help with Connor's needs. .........there are moments when I've truly got 50 things running through my head and I forget my basic math skills and make a facebook plea.  I even ask Tristan to figure the math for me and he knows his stuff, I won't post another facebook plea unless he's not home at that moment when it comes to this aspect of Connor's care.  ( I hate that...Connor's care.  But really, it's like a separate entity of our everyday funness...it's part of our lives but I'm still in some sort of denial...I don't know here, I'm shooting from the hip)  .........anywho, today I'll call Cathy and hope she calls back soon.

 

Naptime with Connor....yeah, total cutie.

 

 

 

We get these periodic smiles throughout most of the bottles.  He gets tired pretty quickly so I've noticed if I hold him more like this he doesn't tend to get as sleepy, plus the spit up factor is less because he's held more upright.  He tends to scream his head off the minute you pull the bottle away but stops the minute the bottle is back in his mouth.  When he's done with the bottle, you just try to burp him and eventually he stops screaming though I do my best to move to bottle from his sight.

 

 

 

Soybean tired but totally loving his music.  He's been a dancer from the beginning and man, he knows what he likes.  He'll be stiff as a board but if it's a beat he likes, he can't sit still.

Mama Intervention

...My hubby has always called me a strong woman.  I sort of took it as an insult at times but right now I am embracing this like no other.   ......there have been women in my life that I love but have a difficult time seeing eye to eye with or I know we're just uncomfortable being around one another and usually it's because I don't understand why they have so much (for lack of a better word), weakness.  ...I know amazingly faithful women who can't let go and let God (I feel this is a universal truth but it may be showing my southern roots).  Basically, they hold on to something, anything and never forgive themselves or truly just let it go and move on.  ...I know women who were strong and somewhere along the line forgot that fact and became weak women.  They became pathetic versions of themselves and I fear they'll never be who they were truly meant to be.    .....Flipping the coin, I've been fortunate to know beautiful and strong women.  My mom, who's easily called herself dumb or weak, is far from that.  She's always had a faith that I admire.  She's not so judgemental in her faith.  She questions things and comes out still shining as the good Lord made her to be.  She's strong too.  She currently works at a prison as volunteer in women's ministry.  To me, this shocked me the first time she said this.  My mother takes her weekend mornings and goes to these women and prays with them, talks with them, shares with them.  I find this incredibly strong.  ...She will easily say something like "if my phone is off for a long time, don't worry, there may have been a fight or something and it'll take me longer to get home".  WHAT????  ....and dumb?!  Far from it.  She usually is far more up to date on matters than I am and her convictions in this world, speak for themselves.  ....Not to mention she has always stood by me even when I was a shmuck and was far from deserving.  She has had an unwavering confidence in me and it took me years to see how much I love and respect her.  ...I consider my being strong not only "born in me" as she would tell you but me having raised in a way that nurtures strength and confidence.  (my daddy also gets credit here...I am just specifically wanting to talk about women though  :D )  ....anywho, besides my mom, I have been fortunate in my life to have met tons of beautiful women who have overcame a gazillion things, who shine with conviction and truth, and who basically shape me into the woman I am, want to be, and am surely becoming.
.....with all of this said, I want to touch base on some hard things that have been going on in my home.  Specifically, my baby, Connor.  ...He turned 5 months old on the 30th.  This was also the 3rd anniversary of my daughter having passed away.  ....The 30th was simply a hard day.  ....really, the entire week was difficult.  .....sometimes I feel like one week is an equivalent to a year between the emotions and facts we face, the difficulties and blessings.  ...Our week started with early intervention coming to the house.  There was a nurse and another lady who evaluated Connor (and probably us...who knows, it's a state run thing, with a pretty small income based fee).  Anyway, I'm excited to see early intervention because they will provide services to help us bring Connor up to speed in life.  He has any and all therapies available to him that he possibly needs. .....by the time they left, we were told Connor was equivalent to a 2 to 4 month old baby and that in addition to basic therapies, speech and physical...he'd also had been referred to the Utah School of the deaf and blind.  ....Me, being me, pretty much wrote off them saying he was near a 2 to 4 month old.  I considered that complete hog-wash.  He's been in and out of hospitals more than some people ever see a hospital and still smiles, flirts, and has an attentive little mind behind those baby blue eyes.  He also has weaker muscles but that's only because he's been physically delayed due to some fine tuning he's needed since he was born.  He's going to be just fine there.  His speech is obviously going to take a bit longer.  He's been born with a cleft palate, had a prosthesis screwed to the roof of his mouth, has "tongue tie" and essentially doesn't seem to grasp the concept of sucking....it's all good.  He was made different and yet, you can look at him and see he's just special.  Not in a my kid has special needs way but in a this one is going to do something amazing.   ........the referral to the school for the deaf and blind through me for a loop.  I was beyond upset.  We had thought there may be a problem but it was one of those ideas that hit you only here and there.  One minute he seemed like he could hear us, the next minute we were certain he was all but deaf.  .....well, in a way that referral had us thinking he was clearly near deaf.  ....I was immediately on the phone with our ENT's office to either talk to Connor's doctor, get some facts, or have an appointment pronto.  Better yet, all three of those items were wanted, if not demanded.  ....after some time of discussion, we got an appointment for the end of the week and had a call back from a nurse who'd spoke with our ENT.  We were told not to worry that it looked like one ear may have some moderate to severe hearing loss and that the doctor believed someone may have acted too soon with the referral.  .....so, like the ridiculous worry-wart I can be, I delved into researching all things hearing loss. I worked myself up with worry for Connor having a world without hearing and then embraced the non hearing world.  ...I did this with reckless abandon.  I diagnosed him practically myself.  All week, we made noises in one ear and then the next.  One minute we were sure he could hear us, the next minute he'd just keep smiling and never turn his head towards a sound.  ....his appointment for another hearing test and later appointment for the ENT finally came.  Connor didn't need to be asleep for the basic tests but he did need to be somewhat calm.........and of course, he screamed his head off.  He was inconsolable and clearly didn't want anyone or anything in or near his ear.  One test came out ok for one ear and the next ear started looking pretty bad but couldn't be completed because the ear bud wouldn't stay put.  ....our ENT appointment got us nowhere but we did luck out and someone had cancelled their ABR test for that afternoon so we were slipped into that spot.  .......honestly, no idea what the ABR stands for, haven't had time or interest since then to look it up.  .......but, we headed for the ABR test.  Connor needed to sleep for this but after a ride for over an hour just to get to the office in Riverton, UT...he wasn't ready to nap again.  The audiologist gave us a two hour window to try to get Connor to nap, I gave him his first bottle in days, the room was darkened....he smiled and cooed the entire time.  He took a poo...laughed...and seemed ok that little thingies were stuck around his head and ear in hopes he'd just sleep so the test could quickly be conducted.  .....not going to happen.  So, the audiologist decided since he was happy that she'd try to get a basic test done.  He failed with one ear the first time but she thought she'd try a smaller ear bud and run the test again.  That time, he passed.  ..........I felt frustrated to say the least.  ......So, there seems to have been contradictions with each and every test he's had....what are the recommendations now?!  ........this audiologist very calmly said relax.  And I did.  After a week of stressing, I really looked at Connor.  He was so happy.  He had a tube out of his clothes, sort of bags under his young eyes, still had things attached to his head and he was smiling as if he created the day.  ...We had a talk about whatever the reason, he passed the simple test that moment.  He had entirely more serious issues than hearing right now.  At 5 months, there is only so much intervention that can happen if he would be found out to be deaf.  He also has tubes in his ears so clearly he has fluid issues that were an automatic for a child born with Pierre Robin.  Craniofacial anomalies are going to affect the ears.  ......Connor was fine.  We had bigger fish to fry and would wait a few months and test him under sedation.   ........somehow, the lights came on for me.  Connor was fine.  We'll learn what we can from the school for the deaf and blind and let all of us learn a little sign language and have fun.  If his hearing turns out great...then we'll have learned something.  and if his future brings hearing aids and/or cochlear implants, that'll be just fine too.    ........seriously, I can not stress how relieved I felt leaving that office.  You had to laugh because of course Connor did not go to sleep the minute we left that office but smiled and looked around the entire ride home.  He was oblivious to any worries.  Me worrying for an entire week did not change him and I still didn't know anything.  If I would have learned anything, he still would have been smiling and looking around and not caring about anything.   I tell ya, it was a profound moment.  ......part of me really saw Connor and how amazing he is.  I felt like an idiot for having worried so much.
.....now, let me rewind our week just a bit for some g tube worries.  Tuesday night around 10, I woke up to hearing Connor sort of choking.  He was puking like no tomorrow.  His face was red and afraid.  He'd puke, stop, calm a minute and then start back up.  His little body was not handling the amount of formula he was getting on his nightly continuous feed (40ml an hour, or 1.3 ounces).  He was soaked from head to toe.  His crib was a mess.  I was a mess.  His carpet was soaked and we were both scared.  .....I couldn't call his pediatrician or his dad (work).  For once he calmed down, I knew it wasn't an immediate emergency.  I just needed to know what needed to be done until his pediatrician appointment two days later.  I ended up calling Primary Children's hospital and asked to speak to the on-call surgeon.  I was instructed to give him half feeds and then make a visit to his doctor the next morning.  ....Within the hour, he was cleaned up, back to sleep and on a feed of 20ml an hour.  He woke up again having this puking and at that point I simply turned off his machine.  ...I gave him some pedialyte the next morning and headed out to the instacare clinic next to his pediatrician's office.  Long story short, this very kind doctor was not a pediatrician and had no clue how to handle Connor's care.  I let him know that in short, I just needed Connor to be ok until we made it to his pediatrician's appointment the next day.  .......I was initially recommended to stay at the instacare office and give Connor a bolous feed (100ml over an hour) of pedialyte (so they wanted the same normal feeding schedule but instead of formula, the pedialyte) and we'd just wait and see what happened.  ......sooooo, as I'm sitting in the office and running the pedialyte through the pump, I decide this is dumb.  Seriously, my 5 months as Connor's mom decides I'm smarter than the experienced (yet not a pediatrician!) doctor.  ....the doctor and I have us a little conversation and I let him know that if Connor starts refluxing this much pedialyte he may aspirate this thin liquid.  So, I decide to just reduce his formula by half and slowly try to work Connor up to his normal feeding schedule.  The doctor agrees and I go home.  ......that night, I once again slowed down Connor's continuous feed but give him formula again.  .....When we finally have our pediatrician appointment, Connor's weight is at 13lbs and 13ounces.  Not a significant gain but he's been having a rough few days so I'm not surprised.  ....before Connor's pediatrician arrives I set out all of his needs for when I change his dressings around his g tube.  His pediatrician (now known as Ped. S on this here post) comes in smiles and says she heard he had a rough few days and to please make sure next time to insist on seeing a pediatrician at the office whether she is there or not.  She lets me know he's flagged as needing extra attention and that he will most definitely be fit in.   .......well, she smiles at my display of soap, qtips, pre-cut tape.  I let her know I want her to watch me change his dressing and see if I'm cleaning his stoma the way I should.  We discuss his issues and she reminds me to call her.  Not text but to call until I get her..at home.  She's great.  Anyway, we go over his hearing and she let's me know there is a cool side to hearing loss in that aids and implants are spectacular and that signing at a young age is proven to be a good step in enhancing early education in babies and toddlers.  We discuss his nutritional needs and she says I'm doing a great job and to continue doing the slow ease back into his normal diet.  We discuss his bowel moves which have become straight up diarrhea and I'm told to supplement some pedialyte here and there.  ....she lets me know before I leave that she'll be calling daily and if not, that I need to call her.  ...........well, I leave her office content that Connor is getting the care he needs from all of his doctors and feeling confident that I'm doing all I can for him.  This was Thursday.  ....the ENT, hearing tests and moment of realizing I need to chill with the worrying came the next day.   ..........
........Now, this is where I'm going to let you know I meant what I said when I posted on facebook that I am truly Connor's medical team leader.  Yes, I do as I'm told by the doctors with everything in his care.  I've done his additional feeding therapies, I've turned screws to move his jaw forward, I've cared for distractors behind his ears, used oil for his various scars, learned to use a feeding pump, learned how to best feed with various bottles and how to thicken his formula to just the right consistency....I keep notes of everything.  If I did half as good in school, I may very well be a doctor myself.  And if this sounds like I'm pumping myself up, you are correct.  .....I am not certain of many things and I question my destiny just as much as anyone else but I know I was meant to be Connor's mama.  I was meant to have Tristan, Ireland, and Sawyer too.  I don't know why Ireland was taken from me but I know I was her mother and loved her and was the only mama in this world meant for her.  ........my faith has wavered at times but I have a true belief not so much that things happen for a reason or are predestined but I have a conviction and belief that what is happening at any given moment is what is supposed to be.  We can choose this or that but once the decision is made, or the moment happens, it's done and time keeps moving forward despite any of your preconceived notions or beliefs.   ..........anywho, beyond my writing things down and forwarding the information to our doctors and getting their feedback, I am essentially calling the shots for Connor.  I realized that between the instacare visit and the day after learning absolutely nothing from any of the hearing tests.    .........now, I'm going to put a sort of disclaimer in here before I keep writing.  I may have already ticked off a person or two mentioning weaknesses they identified with but I may tick even more people off when I mention what I've been doing lately and my personal beliefs on what Connor needs.  Trust me, Mikey and I have even had some major arguments when it comes to Connor and usually it's because I feel like I'm the one that knows best.  I've had to swallow some pride more than once realizing he is his father and also looking out for him.  ....and let me tell you, it takes a strong man to be married to a strong woman.  My peeps (the best ones) know this and have good hubbies....and those beautiful men are rewarded with smart women that also know how best to love their man.
now with this said....I present to you my weekend, our weekend.   ...I wasn't kidding at all when I said something profound happened when I was looking at Connor in that audiologist's office.  He was smiling and seemed like he could give a rat's ass why he was there.  .........that night I hooked up Connor to his feeding machine and gave him 30ml an hour for the night of his regular formula.  I had been working up just a little at a time to make sure his stomach could handle the night time feeds.  ...........well, after some facebook posting of my embarrassment over ridiculously worrying all week, I got alot of encouraging feedback.  My friends that are in the same boat have either been in this position and let me know I was ok and more times than I can count, my friends that just care and/or are mothers themselves reminded we all worry about our kiddos.  ....I started really thinking about how Connor is doing.  Yes, he's happy and certainly must know he's loved. Connor is also sickly though.  He is 5 months old now and his weight is beyond low.  At 13lbs and 13 ounces he sits barely at the 4% line on the standard baby weight charts.  Yes, I've mentioned screw the charts but hey, this isn't cool.  He has a tube hanging out of his stomach and a sock currently balled up beneath the tube to keep the tube perpendicular to his tummy.  He is pale and has bags under his eyes.  He can stand but he's not strong like my other boys were.  I say not to compare but hell, I am human and it's what we do (our actions from that point on is where we define ourselves).  I have a notebook where I write down times of formula, amounts he's had, meds and times, poop, and anything significant going on moment to moment.  I have stared at this thing, had it copied by his doctors and therapist.  I truly feel I know what I'm doing with the information I've been given, I've learned from others.  I do not take anything lightly when it comes to his care.
.........there are two people that have danced around in my head lately.  A friend that visited us when we initially found out Connor simply had a cleft palate and then a loved one that I believe suffers from oral aversion and it shows in her weight and her health (and she knows I love her so know right here, I'm imagining she knows who she is and that she needs to read this knowing that fact).    .....anywho, we have a friend born with a cleft palate.  He's perfectly good looking, smart, friendly....we had no idea and why would we ever need to know that he was born with an imperfection.  Well, he spoke with my husband and calmed us in so many ways.  He admitted there were some tough years with speech and that his mother used to cut holes in the nipples of bottles just so he'd get his proper nutrition.  He also had dental work but really, tons of people need that.  .....and as I said before, we love someone who's not so healthy.  We believe she suffers from oral aversion.  She may very well have additional issues but in our heart of hearts, we believe she started with a belief in herself that she needed to lose weight and she took that belief too far.  By the time she realized she had a problem, the problems compounded.  She is weak to the point of needing a walker, is thinner than thin and chokes easily on a coffee, not to mention any food she's scattering around on her plate.  .......this one is hard to write because we love her so much.  With that, like I said these two people are in my head CONSTANTLY.  In addition to them, Ireland has been ever present and the sadness of losing her was reawakened this week on what would have been the last day we had with her 3 years ago.     ..............well, my sleep has been horrible this week.  Connor has had a horrible week.   ..........I gave him nearly 4 ounces at that appointment in the audiologist's office hoping like crazy he'd go to sleep so we could do the hearing test.  I went on and on about this was the most I'd given him in a bottle but he loves the bottle, works his little chin so hard he wears himself out.  I let her know I wouldn't be giving him the bottle if I wasn't confident he'd be fine.  I worried more about him just spitting up all over me and maybe having one or two more 'episodes' than normal.  The cons and pros were weighed and I felt he needed that bottle....so he'd sleep for the test.   ........funny thing though.  He didn't spit up.  He didn't sleep.  He just seemed freaking happy.    
....move on forward past me realizing I need to stop worrying, I realize he's happy and that's good enough right now.  ........I put him to bed and decide he can handle 40ml an hour of formula and be back to his normal continuous feed for the night.    ..........nope, he wakes up around 2am puking and soaking everything.  I decide he needs the pedialyte and to take him back to the 20ml an hour.  We all go back to bed secure in knowing the apnea monitor will wake us up if there is a problem.  .....now it's 4am and the damn apnea monitor is buzzing like a fire alarm.  Mikey and I just about knock each other over running to Connor.  ......apparently, he's fine.  Somehow, his monitor wasn't plugged in and lost battery power.  .....Can we say dang near had heart attacks?????  ......about 5 am or so, Connor wakes up with another little puking session so we just stop all the machines and put him in our bed.  ........my mind is all over the place.   .............I make a decision.  ..........Connor has gotten so fussy lately and I decide he is hungry.  We're all going crazy trying to keep him on his feeding schedule, worried if he's getting what he needs, worried about everything.  We worry most about him getting a major case of oral aversion and being tube fed if not forever, much longer than anyone would want.   ..........I keep thinking that oral aversion is almost a natural thing for a kid with reflux, aspiration and tube feeds.  Between constantly worrying if they're getting they're nutritional needs met, they're also not getting anything in their mouth or down the pipe (esophagus).  In my non medical and just mama mind, I think none of this is natural.  His esophagus is only getting even slightly wet from the moments he's refluxing and that's freaking acid, right?  And we're pretty certain we're controlling his aspiration by thickening his formula when I give him bottles.  Surely if he were aspirating right now, he'd sound like he has the worst pneumonia ever, right?  And yes, he's still really mucousy but wouldn't thickened formula sort of make the mucus worse?  ......I imagine people with oral aversion that don't want food in their mouth, that don't want or can't handle the food or drinks.  I sincerely think the more you keep the food and drink away from your mouth and the natural act of swallowing, and the food or drink not going down your esophagus that it's only natural that the act would begin to hurt...your body would naturally avoid any of it because it's the body's way of avoiding hurt.  ........I truly don't know.  It's simply what a mom in my situation thinks.   ........well, I make a command decision that Connor needs to freaking have some bottles.  Devil be damned.  ........he starts his day with his meds and I truly say screw the schedule.  If he were perfectly fine, aka normal, we'd give him a bottle when he cries.  Soooooo, I get his formula all thickened up and give him his bottle with the cool pigeon nipple that he squeezes and gets formula at his own pace.  As always, he's excited but tires quickly having only had an ounce.  .....once again, my mind goes where it goes and I decide he needs his old bottle.  The one I got from the NICU where I'm controlling what he gets.  I make some more thickened formula, look at the clock, test it out to see how fast or slow I can control it, and give him a bottle.  He does three ounces.  He doesn't choke.  He keeps it down.  It took about 40 minutes.  ....three hours later, I do it again.  He does 4 ounces in about 40 minutes...good pace.  I write it down in the notebook and start feeling good about this.  .......he spits up just a little through his nose and mouth.  Babies spit up.  .............I do it again and again and ball my freaking eyes out.  I call my mom.  Text my brother.  Mikey knows what's going on and is happy too.  ......I don't tell the world but I call Ped. S to see what she thinks.  She says I know him best and she's excited too.  We decide I'll bring him in this week to her office so she can listen to his lungs to make sure they're indeed clear.   ........see, I'm not completely shooting from the hip.   .............anywho, I've done this all weekend and he's doing great.  He wants to eat constantly and we've kept him on his feeds at night but only at a half dosage.  Part of me is ready to yank the g tube out but I know this is a beginning and we need to be cautious.  But let me tell you, I know this is right.  He looks good!  There is a difference in just two days!  His cheeks are flushed, he already seems stronger.   .......................this may not work for everyone, I may even be prematurely excited though I don't think so................I just know I am Connor's mama for a reason.  ......he will be well in this world and that is a fact.   

My Con-Con.  .......amazing.

Today's thoughts

We've had the G tube going on a week now.  I initially thought we were the lucky ones who everything has looked nearly perfect since then but no.....our world is still feeling crazy.'',,,,,,,,,I am beginning to feel a bit crazy.  I've discovered different support type groups on facebook and yet don't feel like I am part of any of them.  There is the 'I love my tubie' site where all of the people in there are tube fed and throw around questions.  Not a bad group and has infants parents on up to adults fed by tube.  There is the 'Utah special needs' site.  This one I haven't quite figured out.  It feels 'clickish'.  There is the site for 'wide smiles' for those with cleft palates, lips and/or any diagnosis that affects clefts.  This one is truly only helpful to those babies born with cleft lips....it's like Connor didn't fit the profile because he looked fine on the outside...and no one had a clue about Pierre Robin or simply did not leave a comment.  ..............this learning how to live your life with a special needs child is not easy or for the faint of heart, though lately I'm feeling cracks in my personal system.  ......sometimes, you walk around feeling like no one has a clue what you are going through.  Connor is going to be 5 months old tomorrow and we are still figuring out what's going on with him.  He has a decent pediatrician that is amazing when she sees him.  We have her personal number but damn if I can get ahold of her the same day I may need an answer.  Part of me understands this because she has her own life and then the next part of me thinks why did you give me your number if you're not going to get back with me soon, or in a day, or at all?!  ...Connor has a very talented and wonderful Craniofacial Plastic Surgeon.  This man is kind as well as gifted.  He has transformed his jaw to where he can now breathe.  He's thrown in a prosthesis in hopes that it'll help Connor until he can permanently fix his cleft palate.  ...the thing with the plastic surgeon that I've loved is sometimes I wonder if he's looking at all of Connor.  With the tongue tie thing, shouldn't we have been discussing that the first time he looked in his mouth?  Also, we were asking questions about Connor's skull months ago.  His head measures at the 1% line of the developmental scale.  Shouldn't this be looked at more thoroughly than a glance and 'no worries, he's a beautiful child'.  No one would deny his cuteness...please don't deny that he needs some help out developmentally.  Our ENT is not going to win sweetheart-of=the-year but he is knowledgeable and came on board when Connor was having a difficult time in the PICU when he got his initial jaw distraction and had a horrible time getting off the vent.  I didn't initially like the ENT because I thought he downplayed everything.  Now I respect that he sees the complexities going on with Connor.  He is very involved with his swallowing issues, taking care of his ears, and does his best to calm us about this possible hearing issue we're now faced with (more on that in a minute).  Our GI...oh, we don't officially have a GI.  We have a kind surgeon that placed a G tube because it was recommended by Connor's speech therapist and pediatrician.  The GI department looked at Connor during a hospital stay when the distractors came out (and ear tubes placed) for all of 5 minutes.  The GI guys seemed to look at him and simply say 'we aren't even sure he has reflux'.  WTF????  They're also the one that went ahead and scheduled the G tube surgery that kept being cancelled due to peg tube shortages and the peg tube is what I'm learning Connor currently has.  ....I'm clearly pissed at these guys.  I need the GI involved.  ....one good thing is that his upper GI test showed reflux after simply 2 ounces of formula....I've been told this is a big deal because many times kids with severe reflux do not show it during these upper GI's.  .....Connor's speech therapist is wonderful.  She is young and not as experienced but has clearly taken an interest in Connor and this means alot to me.  She wants him to thrive and sees I'm taking daily notes and doing all I can to get him on the right path. .....Connor is also now in the Early Intervention program of Utah.  We just met these people, in our home, for the first time Monday. We filled out a ton of paperwork on his health history and he was developmentally assessed.  There was a nurse and an occupational therapist present discussing the basics of how the program works, the fees, and then the initial assessment of Connor being on a scale of a 2 to 4 month old.  This program will have a speech therapist, an occupational therapist, a specialist and mentor from the Utah school for the deaf and blind PIP {parent infant program).  They will devise a plan in the next week or two and we will be set up with once or twice a week visits from these specialists.     ............the school for the deaf and blind threw me for a loop.  We were informed at our last ENT appointment that there was a definite hearing loss, during the test the nurse mentioned a mild to moderate loss is normal with Pierre Robin, and basically we had so many other things to discuss that particular appointment that we put off talking about his hearing.
........well, now that I've gone on about his care just to where I didn't even hit the iceberg but gave a window into our world....I'm going to rant a bit about my current worries.  And trust me my worries have gotten ridiculous in length but each are important.    But right now at the top of the list is his hearing and this G tube.  
........first, the G tube.  I thought we were smoothly easing into this G tube thing.  We've been keeping him clean, figuring out how to best  keep him clothed and comfy (cut a hold in all his clothes), keeping his tube up and straight as we can (gauze ball underneath the tube...I'll post a pic), and vent him to keep gas at bay (just hooking him up to an empty syringe and letting gas come out of his tummy).  Well, he's rarely had the gas issue but has been spitting up.  His spit up still comes through his nose despite his new prosthesis and of course, out of his mouth too.  I hadn't noticed a major increase in his spit up so have just noted it on my daily notes sheet.   ........I have noticed he seems to do it more after I've given him bottles but he rarely has had more than an once and a half at a time (and I am still just doing two bottles a day though I want to increase this so he can be independent of the tube).  .......well, yesterday, I put him in my bed for a small nap.  I layed down with him since he would be flat versus his elevated bed.  He woke up a bit fussy and then had a massive puking/spit up session.  It was scary.  I had possibly given him about 10 more cc of formula in an hour's time than normal and he did have a bottle of an ounce before getting the rest of his nutritional needs through his bag (g rube fed)....but he puked a ton and his little tummy sort of spasmed.  .......well, I changed the sheets, had to let the bed dry out before adding new sheets and wrote it in my notes hoping this was a fluke.  ......sure enough, his next g tube feeding with no bottle resulted in a bit more spit up afterwards.  .......then I gave him a night time bottle, he barely drank 5cc before falling asleep, I hooked him up to his apnea monitor, and then his machine for his usual 40ml an hour he receives for a continuous feed during the night (g tube feeding).....and 2 hours later, I'm startled to hearing him choking in his bed.  ........His poor face was covered in formula that seemed a bit mucousy.  ....it was a ton again.  He was sort of doing the retching/spasm thing and I'd say he easily spit up most of what he'd received those last two hours.  His bed, floor and I were soaked.  I had disconnected him from his monitor and his feeding machine as I picked him up.  ...I tried to call his pediatrician but got no answer.  It was 10pm...maybe she was asleep...or didn't have the phone.  I tried to call Mikey but he was working.  I racked my brain on who to call.  I considered facebook but the responses can sometimes be nil or hours later.  .......I ended up calling Primary children's and asking to speak to the surgeon on call since his g tube was placed by the surgical unit.  .......I got a very nice intern.  Poor Connor was continuing to spit up and it had become more mucous looking and he was also just weak and tired.  ...man, this stuff is scary.  Anywho, talking to the surgeon, she said to decrease his feeds for the night by half and if we had it (we didn't) give pedialyte.  The next step was to call the pediatrician in the morning to get a same day appointment.  ..............Well, needless to say, I have hardly slept.  I finally went to sleep around midnight.  I wanted to hold Connor or sleep with him but felt he needed to be on his apnea monitor and in his bed which is at an incline.  ...He was asleep before I even layed him down and has slept all night.  I have to check his diaper this morning to make sure he's peeing and definitely get an appointment today.  He can't get dehydrated.  ....this is so very upsetting.  I don't want him on a tube forever.  I don't want him to get the nissan surgery (pronounced NI-Son...and the first question out of the surgeon's mouth when I called).  The Nissan is where they twist the top of his stomach and I have not researched it too much but he hasn't even been truly seen by the GI department.   .........ugh, I'm sitting here wanting to increase his bottles, throw a spoon in his mouth.............Connor cries for the bottle and wants our food when we eat for meals.........and meanwhile, his body is not allowing this.  ........depressing in a way I can not presently describe.
..........as for the hearing.  We were beyond surprised when the early intervention people said he was on the list for being added to needing help from the Utah school for deaf and blind.  First off, he hasn't been tested, but his eyes seem fine.  ..........we're aware of hearing issues but have not discussed them with the ENT. ......yesterday I called our ENT office to schedule an appointment and talk to a nurse.  The nurse emailed our doctor and we were called back and told that he'll be performing another kind of hearing test on Connor on Friday.  Ear tubes can affect his severe hearing loss results so he needs to be evaluated more closely this time.  ......I have googled all I can think on this subject and am just left feeling like he'll probably have hearing aids.  Most kids with the severity of Pierre Robin he's had have up to an 83% loss of hearing (a few reports stated this same number) and are usually helped with hearing aids and tubes.  I'm a little confused that he has the tubes already and is still showing such a loss for hearing but I'm in the beginning stages of this latest diagnosis so don't know too much about this topic.  .......this was the scariest thing to me yesterday morning and by midnight last night, I feel like now the g tube is my scariest thing.
..............I hope to get an early appointment with the pediatrician this morning........and I also hope I can fit in a good nap today.   ............Stress is getting to me.  I have a love/hate relationship with facebook because I want answers and to hear from people dealing with these same things but I'm learning each special needs baby/kid is unique to their own issues.  The parents of these kids are also stressed.  I think the comparison game plays in our heads and sometimes you feel support, sometimes you simply don't.   ...............I will say I have atleast one friend that I've met through technology that has been an immense help to me.  She has more than one special needs child and she manages to relate to me, make me feel less alone in this initial journey of discovery with Connor.  If I only have her in my arsenal of truly relating and understanding my ups and downs, I think we'll be ok.  ........I do feel support from my friends and family....and trust me, I need it.    ..............please continue to pray for us....tomorrow is also what is known as Ireland's 3rd angelversary....
....and yes, I feel like that person that has nothing good to say so should possibly say nothing........but this is my life right now and I have to get these things out.

 

Family that was here for an entire week.  I think they and I were worried about Connor having his g tube surgery smack dab in the middle of their visit but it ended up being a good thing...a blessing even.  We all had a great visit and I miss the babies terribly.  Hannah, Alex, and Whizzy(Winston), we wish  you lived next door!  Sawyer cried all afternoon when you guys left.

 

 

Sawyer, completely pooped after a day at the beach (Pineview).

 

Connor, after the beach.  I was in a complete panic mode our entire time there wanting to make sure he didn't get an ounce of sand on him.  And he didn,t.

 

odd picture of the gauze ball I use around Connor.

 

Sawyer's fav book.

 

Connor in his bouncy toy.  We place the wii under him so he feet touch.

 

Brother time.

 

Tristan resting.  He's been looking for jobs and a major help lately!

 

Connor laughing.

 

No oral aversion here.

 

i want to eat this entire pound cake....but it's for Mikey and his coworkers.  A friend is retiring.

 

Pics from 1st 24hours past G tube surgery....

One of the last pics with the dang g tube.   Some of the pics may bother a few but I have no pics of the actual stoma or anything truly graphic beyond the taped up areas from his stomach.  I hope this is enough of a sort of disclaimer if you are easily offended by medical things...then again, this blog has been largely medical.  :D

His Auntie Megan loving on him the morning of his surgery day...house is complete mess but we've had fun with the incredibly full house we've had.

One of the first pics post surgery.  Connor scared me a bit at first.  His heart beat was past 200 for about 10 minutes when the post surgical team calmed me to see if I could calm him down before they got him on some strong med (don't remember the name, started with a D).  ....anywho, took a while for them to vent him but he got there.  I scored major mommy points for getting his heart rate settled in despite of my initial fear of picking him up (he had many more lines and such attached to him).

I was initially shocked with the g tube and his lips were majorly red from having the prosthesis put in.

BUT...gotta say, he looked great.

Sort of waking up .....and true Connor fashion, was smiling once he saw us.

Pretty dang drugged up with morphine and tylenol and remaining effects of whatever else he had.  But wow, he was truly wiggling around and smiling a ton.  He tired pretty quickly but I'm still amazed.

This is it.  I sort of got a view of his prosthesis but would be hard to get a pic right now.  ....he has what's called the Mic-key.  Most doctors nowadays put the button in first thing....but Connor has an old school doc that prefers the tube first.  It has to have a curl to it that sort of stands straight up from his stoma (the hole in his stomach).  His reasoning for this is that you get a cleaner hole.  If he initially gets the button, it is easier but he can move around so much that the button would wiggle the hole as it's healing and make leakage happen much more.  ....it's hard to explain but I understand it as I look at the differences and sometime I'll take a pic of the button that will replace this tube (we have the boxed up button that will be placed in a clinic visit in 6 weeks).  ....but the tube comes out of his tummy and is taped in a sort of handle fashion....and first thing Connor does when he's up and the blanket is pulled back is pull the thing.  Gotta say, the next 6 weeks will not be easy.

This pic shows the tube a bit better.  There is a cap at the stoma and underneath is gauze to catch any possible leakage from the stomach.  The first cleaning and removal of all that tape showed absolutely nothing.  No blood, nothing.  The doc may be old school but he's good and I totally got what he meant by placing this first.  ....also here, the tube doesn't have the cool tape job that helps Connor from pulling this out. ....also near the blue foot of the blanket you can see the port where he will get his nutrition and meds.  This port only differs from the g tube port in that it has a 3rd port where you fill the balloon that keeps this tube in his stomach (the balloon rests at the base of the tube, is filled with a small amount of water that litterally is in his stomach and the cap around the tube is pushed down to sit at the top of the stoma).  I hope this makes sense....the balloon and cap make a sandwich of the stoma and it's all that secures the thing. 

He looks pretty out of it but he wakes and plays....wears himself out and has stayed on a morphine and tylenol diet this first day (also had some morphine initially last night).

Because of not being able to lay that tube down flat, it's sort of nerve racking figuring out how to cuddle...but we'll get there.

My lack of sleep and his shows here but it's all good, we'll get where we need to be.  He had a tough time his first little feeds but that's to be expected.  He's been suplemented with saline water right now to keep him hydrated.  ......he also had two one ounce bottles yesterday and considering he has a brand new prosthesis screwed into his palate, I'm impressed.  And yes, he spit up a bit but again, he'll get there.

This shows the tape job I'll have to master each morning with Mikey's help.  It's a two man job because Connor is a total wiggle worm.   .....and he loooooves to pull on this tube but they assure me that it should stay put.  I'm told onesies will be my best friend as far as dressing him goes.  My question for today will be how on earth do we manage this with the car seat buckles?!

One of the pics before he went to sleep last night.  He was smiling but my flash manages to take it away every time!!!  .......he slept all night and had his first continuous feed throughout the night.  They started with 20ml an hour and worked their way up to his normal 40ml an hour.  I'm sitting next to him now.  He's still sleeping and doing ok.  He's had a few spells where his respiration rate slows big time but other than that he handled his night well.  Today he'll start a few pumped up bulous feeds.  They were going to start him right off on his home schedule of 100ml 4 times a day but after having a sort of rough start yesterday and getting so much last night, that will probably change after talking to the doc.  Too much too soon doesn't work well for Connor.  .......bottom line though, he's doing amazing.