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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! 

Saturday, July 21, 2012

Incredible week...and a lesson learned

This was the morning of his latest surgery.  I hadn't slept well and needed to cuddle.  .....I am still in absolute amazement of how our past week has gone.  I worried and worried and Connor was home the next day.  ........I definitely spoke up this last time before his surgery and when each doctor came out to talk to us about what they would do during his surgery, I made it clear that we trusted that they were experts in their particular job....we were just worried about him getting off of the ventilator as soon as possible.  ........I will forever believe he was home so soon because of this fact.  ....Next surgery, August 1st (for G tube placement), I will request his last anasthesiologist.  She not only listened to our fears but visited us that evening to see how Connor was doing.
.....Connor's respiration was pretty low until the next day and he even had the alarms set off before we left, but I believe that was due to pain/pain management just as much as the prior anasthesia affects.  His wounds from removing the distractors look great and beyond fussing when we place his ear drops, I believe his ears are fine as well.    .........the afternoon before we left, the GI team came by to acess Connor.  They definitely believed the G tube was what Connor needed from notes they've apparently read but I was completely confused by the time they left our room.  I had thought the placement of the G tube was to help his reflux just as much as simply getting rid of his NG tube.  The doctor said G tubes can actually make reflux worse but that he didn't believe reflux was the big issue with Connor....????????......let's just say, I have alot of questions.   ....And just yesterday, he was scheduled for a definite G-tube placement/surgery.  ....I'd imagine this is good but when the GI doctors were speaking with us, they had mentioned several tests that he would need to make certain his anatomy was correct before doing this surgery.  I asked the GI coordinator about this and she is supposed to check on all of this.   .........I guess there is just more to come on this topic.  I have calls to make and will set up an appointment with his pediatrician this week to make sure we're all on the same page.    .........Connor had a bit of a rough day yesterday but I think his stomach is hurting from constipation (we'll pump up his one med today to get him to poop..it's been since tuesday).  And also, I think between all of his meds and having started back to his bolous feeds (the intervals of 3 ounces of formula over two hours and then off an hour) after having a slow and steady dose of formulat to his tummy the past few days, his stomach is simply sensitive and may have had too much too soon. ...today will surely be better.  He was very fussy and there was alot more spit up and sort of gurgly, gagging sounds yesterday.  Plus his tummy is hard....and having just had a major surgery that cut his jaw/face open again probably doesn't feel all that great.  And the ear tubes...I guess he had a ton of fluid and also an infection was starting behind one ear drum.  ....better day will surely happen today.

.....after all the scariness of the recent shootings from the Colorado movie theatre, I wanted to make sure I posted about the goodness that we've had from so many good people lately.  Beyond the outpouring of kind wishes, prayers, the occasional Avon business from someone that could of gotten their products from a store for immediate purchase gratification, and the help we've received from friends taking care of Sawyer....we've experienced a few great things from absolute strangers.  ...often, people will just mention how adorable our babies are and some will ask flat out what is going on with Connor.  With him having a tube constantly taped to his face, he tends to get looks wherever we go.  I usually just respond with he has some issues he needs to work through and that he should grow up just fine without remembering these surgeries and tough times.  ....well, my last Walmart trip and I went through one of the lines with one of the cashiers I see pretty often.  This time around, the young guy asked about Connor and I told him he had a surgery coming up.  The cashier proceeded to ask if he could pray for Connor.  I thought, sweet.  I also thought this guy would go home and pray for him.  ...nope, totally touched his foot, bowed his head and said a quick prayer for my little man.  And I'm not sure if mormons say "in Jesus name we pray" because I've never heard them say that, but it sort of made me feel a connection with home because most of my family ends all their prayers with this before saying amen.  ...anywho, after an instant of shock, I was amazed.  This is a fairly young guy that had a certain look that didn't necessarily say "Christian"....and here he was publicly praying for my baby.  It felt incredible.  Regardless of anyone's personal beliefs, this was a guy that actively was practicing what he believed in and that was a beautiful moment.     ..........also, we had no eggs or milk in the fridge yesterday morning so decided to have breakfast at Cracker Barrell before heading to get some groceries.  Some perfect stranger paid for our breakfast.  ...I'm still in a sort of shock over this random act of kindness from a stranger.  He didn't stick around for us to say thank you and I have no idea who the person was or what he even looked like.  I'm not sure if he was young or old or anything!...I only know he's male because when we asked for our check, our waitress teared up and said the man behind us paid for everything.  ...Can I just say how sad it was because we were not certain how to act?!  We both were instantly teary and talked with the waitress about how amazing that man was to do such a thing.  She could hardly talk and just sort of said he must have noticed Connor and that he had some obvious things going on.    .....I am far from kidding when I say it's sad we didn't know how to act.  It took us a minute to say thank you and to realize something wonderful happened and we were supposed to be grateful and leave.   .......We come home and do our daily routines and then decide to watch the first Dark Knight movie.  We had no idea about what had happened in Colorado at this point.  We hadn't watched the news and were enjoying the glow of unexpectedly having a great week. ....at some point, we went to facebook and sure enough, learned of what had happened at that movie theatre.  We went to a news page and read about the horrors that happened Thursday night and were just shocked of the violence people are capable of.  ....What shocked me even more was when I stopped and thought about how we see and hear about so many unimaginable horrors in this world, that we are almost immune in our responses to them.  I'm not saying that we don't care and realize that these things are horrible and sad and sometimes downright disgusting.  I'm just saying that we are not shocked to a point of being dumb-founded.  We do have that instance of horror or disgust but we immediately have conversations of the bad person or the sad families.  We spread a thought to the world that we hope this doesn't happen again and that our thoughts and prayers are with the victims.  We feel sadness for the parents of the evil perpetrator.  We are glued to the media, the horrible scenes, the stories of hope.  We form our opinions.   Yada, yada yada.   The point is, between reportings of natural disasters, evil doings, and all things horrible...we, as a society are a bit desensitized and I believe we have to in a way because those things are horrible and we can not let fear rule our lives.  .......and then we flip the coin, and realize how many wonderful and amazing things go on every single day.  We are desensitized and not tuned into these things and it is sad.  We make jokes about things being "gushy" or "sensitive" or whatever.  We roll our eyes because someone prayed for a baby.  .............it's just sad to think that we didn't know how to respond to one of the kindest things a stranger has ever done to either of us.  That man wasn't out for recognition, he just wanted to do something good and beautiful.  That kindness will linger with us for a long time and it truly has us wanting to spread that kind of goodness in the world.  ...I've always believed that kindness, goodness, the changes we want in this world totally start at home.  I believed I was doing good things but I feel I learned a lesson in Cracker Barrell and in Walmart.  I'm not doing a damn thing most of the time.  I, personally, need to change that.


Wednesday, July 18, 2012

Surgery Day...amazing day

Well, I was up at 230am and googling everything.  In my mind, it made a difference because I definitely spent time with the anaesthesiologist this time around.  ....with each surgery there is a different anaesthesiologist and even though general notes are read, we have learned that the notes do not contain everything.  For one, they don't necessarily read the history and with Connor, that is important.  .....we made certain that this woman/doctor knew that he needed off the ventilator ASAP!!!!  Obviously, it is their call but we made certain she was aware that he had a terrible time getting off the thing last time and really, I think us talking through things made a difference.   ......Connor's numbers are not perfect tonight.....but he is being monitored and he is doing all of his breathing on his own.  He is not needing oxygen and we're not even in the PICU this time.  This is an awesome scenario.......and we should be over the moon....part of us is and truth be told, part of us is just waiting for the ball to drop.  It's happens every time we get hopeful.....but really, this feels different.  He looks amazing.  He went into the surgery looking and sounding great.  ....Dr Siddiqi, the plastic surgeon, said everything went smooth.  His jaw looked great, he was opened up, his gums were matched (meaning top gum and lower gum met each other...this is done to assure when jaw naturally draws back that it will be natural looking), his incisions at the chin were straight and should heal to barely a scar, and the wounds behind his ear should heal nicely.  His airway is open.  ....Dr. Meijer, the ENT (ear, nose and throat) said his one ear was flooded and something was going on underneath the other drum so it was good he got his tubes in today.  That went well also.  Dr. Meijer also looked  at the anatomy of his throat and said that there was alot of secretions but that his anatomy looked great.  A GI(gastrointestinal doctor) is scheduled to look at Connor tomorrow and the speech/feeding therapist will also come by tomorrow.    ...........all in all, the day has gone beyond our expectations.  We expected at least a one and a half week stay....as long as his respiration improves and oxygen levels stay in a good range, we could be looking at going home real soon.     ..........my only complaint right now would be sharing a room....this is standard practice but every time the baby next to us makes a peep, Connor is disturbed as well (and really, the same will go for Connor making noise and waking the other baby)....HIPPA (those ridiculous notions of privacy in a hospital) is a joke....not exactly private when you're only separated by a curtain.       ............anywho, expectation were totally exceeded today.......praying for an amazing night.
This morning before everything.

Tuesday, July 17, 2012

The Day Before another Surgery....

I should probably title this something else but since it's the day before surgery...it'll do.   .........The process of preparing for Connor having surgery really starts weeks before.  Anxiety and worry is a given.  Reminding other doctors is not.  .......In the past few weeks, Connor seems improved as far as he sounds but then again, he can still sound horrible on any given day.  The area where the jaw distractors come out of the back of his ears got slightly infected at one point where green mucus began to ooze a bit at the wound site.  ...Speech therapy (where he learns to feed/move his tongue and swallow) has basically been pointless at this time because everything depends on him doing well or having a set back with this next surgery.  Even seeing his everyday pediatrician has been about monitoring his weight, not getting a diagnosis for feeding problems.  ........This next surgery has me on edge.  Connor smiles now, he coos and "talks" like no other baby I've ever seen.  He is, to say the least, just beyond adorable.   ..........Last night, it was hard to sleep.  So, as in all of us saps, I  posted a worry about Connor's surgery on facebook.  And, say negative things about facebook (I do all the time), but my friends and family that were up, were encouraging and I eventually shut off the phone and went to sleep.  ....Today, I'll have my phone attached to my hip awaiting the call that gives us the definite surgery time.  I don't know why I tell everyone that I'll call and let them know.  He'll be first.  The youngest are always first at Primary Children's (unless it's lengthy or emergency).  We'll have to get up around 430am.  We'll have Connor, Sawyer and myself packed tonight.  ....Sawyer will need to have some basics to go to our friends' house and most likely enjoy a bit of being spoiled.  I'll pack a minimum amount of things for Connor because the hospital will take over his basic needs.  I'll definitely pack his feeding needs in case of an emergency (we learned the hard way to always have an extra bag and formula).  He'll need a few diapers, some outfits for when he gets better, and I like to bring his own blankets.  Because we figure on him staying longer than the standard 3 days, I have a basic collage of pics printed out and framed for him.  His family will be there (as I know they'll be in thoughts and prayers).  I have every Grandparent, Aunt, Uncle, first cousins, brothers, his own angel/sister, and of course us (mom and dad) on this collage.  It matters and I wish I had it last time.
...I pack with a sense of hope and reality.  I want us to only be there for a few days but am told too often to anticipate another set back.  I figure I'll pack for 3 or 4 days and nights because I'll need to go home at some point and this will force me to.  ....It's funny...in a sick way, I guess...but I imagine I'll be like the movies and read or embroider projects because I'll be sitting over Connor day in and day out.  I stress shop for some materials, patterns, threads....this is my thing.  I spent part of last night ironing fabric.  ........It is highly doubtful I'll read more than a magazine and beyond the actual surgery time, I end up googling every single word that a doctor or nurse says.  I stare at his monitors and will numbers to go in the direction I want.  I stare at him and will him to get off any particular machine and to please heal fast. I pray and I pray hard.  I start feeling guilty that I'm not with Sawyer.  I feel guilty that I'm not updating Tristan, Phil, my mom and dad...I start feeling guilty that I haven't talked to Mikey's mom or dad, that I'm not asking about Nana Tam because she's going through things, I haven't called anyone in our Broad family.  I've neglected Sarah and the boys.  Ben is in my beloved Air Force and I haven't sent a care package.  Have I texted Bobby?  Donna?  Bonnie??....I start missing Ireland....and oh how I want to call my friend Tree (my friend that passed away in January).  There aren't many people you can call in the middle of the night but Tree had her very own weird schedule and I could tell her ANYTHING, EVERYTHING and there would be noooooooo judgement.  There would be no feeling of guilt because she was tired or stressed herself.  She was amazing and in my toughest times, I miss her.  I just miss her anytme, but I feel like I need her during the stressful times.   .......Ireland, I feel there.  Sometimes it's comforting and I'm going to be honest, sometimes it worries me that she'll want to take my Connor (I've just confessed my deepest and darkest worry so careful how you judge, please).   ........It is the craziest thing ever but our song for Ireland is Smile (sung by Uncle Kracker)....it played constantly when she was in the hospital and was one of the last songs we heard before she finally left this earth.  ....Without fail, we hear that song nearly every single time we are nearing Primary Children's hospital.  It almost borders on creepy and truth be told, we've turned the channel before so we don't start crying......For me, I smell her (or rather the intense smell of flowers we had leaving the funeral home with a car full of beautiful and lovingly given arrangements).  It's only happened a few times but it happened the one night when Connor had his actual jaw distraction and I was so very worried about Connor getting off the ventilator.  That night it wasn't scary or necessarily comforting.  It just felt like it was a fact she was there with me and a moment I will never forget.  It became a comfort when I realized she wasn't there to take Connor but just a sort of moment she let me know she was there...I wasn't alone and I spent a moment with her and that was beautiful.    .......anyway, Connor will get his distractors out tomorrow and also have tubes placed in his ears.  There will be no turning us away this time regardless of how good or bad they believe his lungs sound.  The distractors must come out before they grow into the bone further.  ....He is still slotted for about a 2 and a half hour surgery (as far as I know, this hasn't changed).  He did not have to get blood taken for a possible transfusion so I imagine this means they believe everything should go smoothly.  I, personally, do not worry about his surgery.  I trust his surgeons completely.  As always, I worry about the after.  I want him to rock that ventilator and get off of it fast.  .....Mikey constantly get irritated that he even needs a ventilator but it's because all infants need one.  They're young bodies are nowhere near the same as ours.   ..........I have the name of the drug, precedex, if he begins to rely on the ventilator more than trying to breathe on his own.  This was the drug that sort of surpresses his diaphragm and if Connor starts to get sort of lazy and wanting the ventilator to do all of the breathing work, I need to mention this drug to them.  I don't remember all the ins and outs of how this changed the game because I recall them putting him back on this when they discovered it was a problem but it was the drug they wanted me to mention again if we start to get in a predicament.  ....I am fully prepared for Connor to need a little more time after the surgery but the intensive care unit is the place I want us out of quickly.  The PICU staff is amazing, he gets 24 hour care there,....it's just not the place you want your baby to be.  Even when the babies are doing "good" there, the fact is that it's called intensive care for a reason and I want him in the general unit ASAP.  Once there, I believe I can breathe a little easier.  I like to be there because those nurses are responsible for too many babies at once and who knows if Connor will have a noisier cry this time or not.  Of course, the nurses' station has his monitors, but they are human and rely on hearing them just as much as those monitors and last time, you could hardly hear Connor when you were just next to him.    ...........I feel more worried this time.  I am scared for him and feel it's pointless to say you don't want him to be in pain because of course he'll hurt.  Surgery causes pain.  ....I am worried I'll be the most hated parent because this time around, I don't feel clueless.  I expect him at the very least to see a GI (gastrointestinal doctor).  I will not sign a release paper until he sees one.  He may not get a diagnosis for his feeding issues but he damn well will see an expert while we are there.  We will not go home with me feeling helpless as to what is going on again.  ...I can totally work an NG or NJ tube.  I am comfortable with suctioning and checking oxygen.  But, I want a clear or atleast clearer plan of what Connor's next step in healing is.  I've got the honest assessment of he'll not be taking anything by mouth (most likely) in the next six months...well, he's still got a cleft palate that needs closed.  Will anything he learns after this surgery be screwed up the minute he goes for yet another surgery to repair that?!  If they want to give him a "G" tube in a month or two to replace his NG tube, will that set him back again????......ugh!!....prayers for a quick recovery for Connor and answers to his additional problems....please.




Wednesday, July 11, 2012

Contentment

Our Con-con with his binky dog........he is mostly a very happy baby!!!...and he's clean, nice tape job (if I say so myself), nicely made binky dog (thanks Marnee for cool beanie babies!!), he's dressed in clean clothes, clean bum and played with and loved on constantly!!!

Sawyer totally crashed...and look carefully, because the background is mostly clean, his socks appear mostly white, he's loved on constantly and apparently worn out from fun!!! ...and guess what, my master mama skills have these boys down, in their beds, nightly by 8pm.  Yes, the nerd/master mom also sleeps soon after most nights....but, I tell you now, having them on a schedule is the smartest thing I have EVER done!!  (even Mikey now appreciates this) 

uh-oh, tape on opposite of face from the above....must mean the mama has rocked the tube and placed it lovingly on the other side of his face so he doesn't get irritated skin.  He's doing that smiling thing again ............loooooooooove this guy!!!!


My word.........a laughing baby Sawyer!!!! complete with homemade pasta, a homemade bib (this is one of three I made last year and yeah, I'll brag about it), and nutricous milk (forget that his mom can't spell or figure out the spell check on this new blogger).....oooooooh, I love me some Soybean!!!!!



I read recently that the secret to a good life is Contentment.  It said something to the effect of being content is an equilibrium of accepting today and still aspiring for a wonderful tomorrow.  ....looking at my last posts, I don't think I show much satisfaction with my life.  I want to convey that I am for the most part accepting of my life, it's simply going through some hard times.  My children are going through hard times.  ..........anyone that sees us or even pics knows that we are apparently getting some things right.  I have not figured out the secret of contentment but do know that it is a big part of keeping happy and as positive as you can on any given day.    .....my friend had posted one of my favorite sayings  "life is not about waiting for the storm to pass, but learning to dance in the rain".  I have this embroidered in my living room and she has it displayed in her home.  Funny, we've both lost children and rough things have happened in our lives and yet, I think both of us have the spirit of dancing in the rain.  It's not a skill I've mastered but it's one I work on.     ............that's it peeps.  I just wanted to not have a doom and gloom shadow on my blog.  Hard times, yes.  Contentment....yes but it is a choice and something I work on...it's my dance in the rain.

Tuesday, July 10, 2012

The special needs "Holland" bit....

I went google searching tonight for "special needs" inspiration.  I found a ton of autism blogs and a hilarious 50 Shades of Grey edition for special needs moms....and then the story I'd used on Ireland's blog (which of course made me cry!):
The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

and then I found this one:

WELCOME TO HOLLAND
by
Emily Perl Kingsley.


c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I'm thinking the first one has just as much meaning to me now as it did when I had Ireland (minus the saint in a mirror part).  .....and the second one brought me to tears and had meaning to me but it's not my experience either.  I'm definitely in Holland but I am thinking it's just a detour.  All of the feelings that my dreams are messed up are there though and I'm feeling an extreme loss.   .......today, Connor had a speech therapy session.  This is where we must go to teach him how to eat.  ...Right now his lessons are simply one to two minutes at a time of trying to get his tongue to cup around your finger and for him to pull his tongue forward.  We were there for over an hour and we only got to try this twice.  He started to atleast pull his tongue forward but he'd get upset.  ...He's basically made his own habits of retracting his tongue and instead of sucking, he sort of does a munching/opening and closing his mouth move.      ........next Wednesday is Connor's surgery.  His lungs sound better to me though he still very much has a gunky breathing sound that I believe sounds worse just because of his cleft palate.  Most of today's session was about the realities of Connor probably moving a backwards once he has this surgery.  I, of course, worry about his jaw retraction surgery and the ear tubes but more than anything it's him going under (anasthesia/intubation).  How soon will he get off the ventilator and how much will it set him back?  ...When you're intubated as an infant for long, aspiration can naturally start happening............oh, how I hope him being nearly 2 months older will be a big difference here.  Part of me believes so much that it will but because he's been doing so great, I'm having a hard time wrapping my head around any sort of set back.  I've been extremely emotional lately and I think it's in large part because I know we're about to have another difficult time and I just really don't want to go there.  ....we talked again today about if he has the difficult time and discussions begin about NJ tubes versus NG tube then I need to speak up and basically say I want a GI (gastrointestinal) doctor to come for an opinion.  My pediatrician has said this as well.  ....Connor being at the hospital longer than planned can be beneficial in seeing specialists the same day versus a possible month waiting period if we were just to try to make an appointment.  The speech therapist and pediatrician believe Connor should move to a G tube and ultimately this is a GI doctor's decision.  ..........basically, the G tube goes directly in the stomach....literally through the stomach (no more putting tubes back in the nose, just a surgery that has a tube sticking out of his stomach)....this calls for another surgery but because Connor's feeding issues are not expected to be resolved within the next 6 months (I know, ask me why I seem down) the G tube eliminates complications from both the NJ tube and the NG tube (mainly so much x-rays involved with NJ tube, Connor getting older and pulling the tube, and really neither tube was designed to be in as long as they've been in already).  Oh, I just want him to get better.  And like the story above said....we landed in Holland.  We're not sure how long either....so it feels more like being Tom Hanks on that Island and wondering if someone will find us and take us back where we're supposed to be.  (so ...hmm, does this mean my blog is my Wilson?)    ............anywho, we're moving along.  Connor has surgery next week.  He looks great.  He's gained weight this week and was 11 pounds and 11 ounces.  He's been fussy lately and isn't always easy to console but I'd be fussy too if I had so much going on.  Sawyer has been fussier too and I think that has alot to do with being 17 months old, missing his older brother and wanting more attention.  ...I try.  sometimes I get it right, and sometimes I don't.    ...........life has felt heavy lately.  Someone not too long ago told me to try to enjoy this time.  Part of me gets irritated about the comment and another part of me just feels sad.  Of course I want to enjoy this time.  I have a 17 year old and know too well how fast that time flew by.  ...now, I have two babies that I love so dearly and wanted more than anything.  Of course, I want the world for them and I want to laugh and have fun and teach and listen and everything!!!....but first, I have to see what time it is turn on or off a machine, remember to call this or that doctor, go to the one office for a weight check, make sure the meds are given in the right doses at the right time, do speech therapy exercises, take care of his jaw distraction/ears, change two sets of diapers, get an oxygen reading, put the tube back in and make sure it's in the stomach and not the lungs, clean the house (somewhat), do the dishes, feed everyone, try to sleep a bit myself, do my best to keep up basic relationships........ETC.   .........just saying, I'm in Holland and I'm still sort of in shock that my plane landed elsewhere.     ...........and in that list of stuff, which I surely forgot plenty because I have Tristan and Sawyer that I'm loving and caring for the best I can (and a husband that is probably being taken for granted), I am surely doing my best to find the enjoyment but right now, it's not easy and I'd appreciate someone just taking a moment to get a full picture of my typical day.  ....If I go outside and have 10 minutes to blow bubbles and watch Sawyer run around watering his shoes, I feel like a success.  Yes, life is crazy and hard but if anyone can enjoy "moments"...it is me.      ..............anywho, Holland.  Guess we're there.  or on that island with Wilson.....(and someone....remind me what the name of that movie is please.) 

Friday, July 6, 2012

Redefining the Dream/middle of the night ramblings

Who knows what this post will look like when I'm done.  I've been up since before 3am and the problem with blogging is you do need to censor yourself a bit....after all, your mom may read this...your mother in law, the hubby, FAMILY.....so the whole blogging is an online diary is a myth.  Sure, there are anonymous bloggers but I'm not one of them.  .......anywho, I got my boys down last night and started looking through netflix.  I wasn't really ready to committ to a movie, but just wanted to see what was on there for when I did have time.  ....Pinterest had already gave me inspiration to atleast clean  a bit....  Anywho, I watched an Andy Griffith show earlier and felt that the first show was stellar....I figure this will be the show I watch for the next few weeks.  ....I browsed some more classic shows and then landed in the documentaries and specifically a movie called Phyllis and Harold.  Wow, I will eventually have to watch it because the comments got to me.  People either loved it or hated it....but the ticker was that it was an honest account of this woman who was married for nearly 60 years and was in love with a married man the entire time.  She apparently sounds a bit selfish, totally spoiled, and had a doting husband that was clueless.  ....EEEEEEEKKKKKK!!!!   AND, this is all true, filmed and interviewed by one of the two daughters they had.  The comments were incredible.  Some were angered, others were thinking it was brazingly honest, some told stories of feeling familiar with the story and the time,......anyway, I've got to watch it at some point now.  I'm not sure if I'm approaching the movie as a freak show or as an honest account of one woman who was sad and yet selfish too.  ..........but of course, I went to bed and somewhere around 2ish, I changed Connor's diaper, checked on Sawyer and soon realized sleep was not in my near future.  This is when my mind starts lingering.  Tonight it lingered on how I believe people perceive our life.   ......I won't even go to the place of people saying they couldn't do what I do.  Yes, anyone can.  If you live and love enough, you probably will deal with more than you ever thought you could or would.  I just happen to be going through trials a little earlier.  My admiration for my elders grows daily and this is another post for another day.    .....What amazes me are those that believe how perfect Mikey and I are for each other (or just insert your perfect cliche of a couple here)....Don't get me wrong, we love each other but sometimes what is important is that we are committed to each other.......    I am a firm believer in people live in seasons.  There are times when we are feeling perfect for one another and then times when we drive each other nuts.  I think this it what makes us stronger in the long run but God help you, if you think there is some romantic perfection going on right now.  .....I don't know why I feel the need to air this "dirty" laundry but I think in the midst of my pinterest and facebook jealousies, part of me realizes that I'm feeding into a dangerous mindset because no one on this earth is perfect.  Pictures and even facebook are simply snapshots in time.  We all have these perfect moments and really, it's awesome to celebrate those and to cherish them.  BUT, they are snapshots and not the total picture.    ........I'm going to let you into my real world here.  I love my husband but when he farts or says something outlandish, I am thinking he's the dumbest person on earth in that moment.  LOL, I can see people cringing but this is true.  I love my husband because he loves me back even when I wake up in a mood that has no real foundation...I'm simply in a mood.  I love him because he sticks with me and usually supports me though he may not always understand where I'm coming from.  I want him because he usually wants me.  ....and I say usually, because there are times when we are real and imperfect and on two seperate pages because we are real and two seperate people.    ......Bottom line, we do love each other and I see us living a long and mostly happy life together (I say mostly because it's not all fun and games).....When Ireland died, people thought once again that we were amazing with each other.  People had no clue.  Mikey worked and I went into a dark place.  We were there for each other but neither of us understood the other.  We talked but we didn't understand where the other was coming from.  What kept us going was our committment to each other.  Love is part of the equation but really people romanticize love more than understand the work involved.  I think people forget basic english.  Love isn't a noun or an adjective, it's a verb.  It's an action.  When people forget that, their marriages crumble because they didn't keep up the work involved with engaging each other and literally, keeping the love alive (yeah, i'm just geek enough to see the noun here...).  Our love was shown during that time by simply letting go a little and just sort of being on a stand by status.  This was time where neither of us judged the other, we just accepted our different approaches to handling a world without our girl.......sometimes, when I feel a little jealous about how others lives seem so perfect right now, I stop and think maybe they don't have it so great.  Maybe they have never had something major happen to them and when something does, are they made of the stuff to endure the hard times. Because yeah, I'll say everyone can do what I do but I don't think everyone would.  Some people don't have the kahunas to do what needs to be done.  Some people think life should just give them whatever they want versus them having to work for it.   ........who knows.....
.....I just know, we are going through a tough time again.  We married in 2004.  We already were raising Tristan together and wanted to give him some brothers and sisters pronto.  ......we made good money and tended to get what we wanted, when we wanted it.  We took trips on weekends, ate out, went to movies, got new stuff all the time, etc.  We were living the dream...our dreams anyway.  We had a blast.  Fun parties, good times.  We were living a wonderful life.  We loved each other deeply and I think everyone knew it too.  We worked hard and played hard.   ....and man, we both loved the entire concept of family.  We were a family already but we really wanted more.  ....somewhere along the line we realized things in the fertility department needed help.  ....I'll spare the long story here and condense it.  ......IUI's, meds, doctor appointments for Mikey and myself, embarrassing issues....and then YAY!, pregnant....and then the excitement of our baby, our Ireland, our new dreams with a daughter and then the crushing reality of that dream instantly gone.  ...there isn't a pause long enough to explain how crushing her absence is.   We somehow went through this time and tried to be there as the same loving parents to Tristan but let's face it, we were not the same people after this.  Our finances were different, our personal selves had changed.  Tristan changed and oh poor baby, he has gone through so much with us while living his teen years...I'm not sure I'll ever understand his experience fully.    and then I'm pregnant again...neither of us fully comprehend I'm even pregnant and just as fast as I realize there is a life in me, that life ends in a miscarriage.........well, slowly we begin a new life....a trip to Zion's national park, a new job for me....and BOOM, I'm pregnant again.  This time is different.  Things are stressful, emotions are still a bit rocky but Sawyer is strong and brings a new light into our world.  ...I can not even begin to describe the beauty of Sawyer's life. .....of course, all babies need us to care for them but my God, Sawyer turned our lives back on.  Mikey mentioned once that he never thought I'd be the same again and really, I will never be the same....but Sawyer's life was a true gift.   ........and sure enough, fun times were coming back and I got pregnant again.  ......and no lie, I was scared.  I wasn't scared of losing my pregnancy or my baby having problems....I was scared that I wouldn't be able to handle two babies!!!!    .......................and here we are.  I can handle two babies.  I can love two babies and a teen just fine.  ..........my life is different though.  We do not go out.  We can not afford what we used to.  Once again, we don't feel in control of our destiny.  or, I don't feel in control.  I can only speak for myself.  .........this weekend, our last four wheeler will be sold.  It is an expense and something we don't have time to use anymore.  It makes me sad but then again, I dreamed of having these babies and I have them.   .........I am in the process of redefining myself, my roles in life and ultimately, my dreams for myself, my family.  I suppose we are all redefining ourselves continuously but I like to think my life right now is probably a little more dramatic than yours (I say this in a totally loving way).   ......Today, I just want happiness.  I want Connor to have a good day and for Sawyer to have fun and laugh.  I want to work on Connor laughing.  I want to make sure Tristan is having a good time at his dad's house.  I want to not feel a sense of duty but a sense of my own happiness.    ..........I read somewhere that people are always searching for their purpose and that if you're making a list everyday of things to do, that is your purpose.  I love that.  It is simple and the article was much more involved but this is what I took from it.  Make a list and this is your daily purpose...you'll get to where you want to go.  ........I used to dream of my next weekend trip, my next meal out, my next big vacation.....now, I'm dreaming of what I'll make such and such for Christmas because it needs to have meaning and yet, I can't just buy something this year.  I'm dreaming of Connor getting through his next surgery and then learning to drink from a bottle.  I can't wait for Tristan to come home and the dream is that I'll have this teenager that does his homework, has the perfect girlfriend, does nice extra curricular activities and involves me in nearly everything (it's my dream!!!!!).  I dream up Sawyer finally saying "mama" and us just having fun outside.  I dream of just having a nice conversation with my husband and him possibly giving me a small gift that is unexpected.  ...........my dreams have changed quite a bit and right now, I have a hard time looking beyond tomorrow.  I really want my health to stay strong (had a few scares in a short time but another post, another time).  I would like to sleep well.  I would love to have my closest friends nearer to me.  ....I dream of parties again but thinking smaller scale and better conversations are outweighing the big parties of the past.   I dream of just giving a hoot about my appearance right now (because frankly, right now, I could care less even though instant body perfection would be nice).    ..........anywho, once again, my thoughts are random and all over the place.  I love my life and yet I'm irritated that what I believed to be simple dreams and wants in this world have not panned out the way I thought.  I hate that I do not have Ireland here and I can't stand the thought of Connor being labled a special needs level 3 child (another post).  I hate that Tristan is a product of divorce and that he has suffered in his own ways for all that has happened in the past few years.  I hate the thought that Sawyer is not having the fullest childhood that I dream for him and his brothers.  I hate that my marriage to Mikey is nowhere near the commericalism of a perfect life/love.  ......ick, lots of hate here .....on the flip side, I love every single one of these guys.  I can not begin to count the ways I love each of them in their own special way.  My life is beyond what I dreamed in terms of the love I feel for them and the enrichment I receive from them.  .............anywho, this was my middle of the night ramblings.........a baby is crying and needs me now.....and then I'll make a list and do as much as I can......with as much positivity and happiness I can muster at any given moment.....

Sunday, July 1, 2012

Connor's Pierre Robin story ....in pictures

I feel a responsibility to put informatin out there on what Connor/we have been through since his diagnosis.  For one, I hope to help someone find information when you're frantically searching for information after a new diagnosis and secondly, I hope to find other people dealing with our same issues.  ....so for my friends and family, this may be a boring post.  also.....it's a ton of pics.
This is me and Connor, March 30th, 2012.  He weighted 7lbs, 14 ozs.

Our newborn baby.  Swollen as all newborn's sort of look but something off with his chin.  I got a lot of feelings at this time where I felt people were judging me for thinking I was calling my baby imperfect....what I know now is to trust your gut.

Shortly after he was born, I fed him a bottle and swore he was turning blue around his lips and nose.  He'd of course recover by the time a nurse came in but eventually, his pediatrician came and said he believed he should spend his first night in the NICU.    We were informed about 4 hours after his birth that he had a cleft palate.  We were devestated because at that point we were having a real difficult tmie distiguishing what happened with Ireland (CDH, congenital diphragmatic hernia and her passing away 11 days later...story at www.lovingourirelandrose.blogspot.com) and what was going on with Connor.  It is safe to say that I was hysterical the first night after Connor was born.  I knew something else was going on.

Connor had a few times when he'd choke, turn blue, and basically have a tough time breathing.

He was not eating well and was placed on an NG tube his second or third day in the NICU.  Because I had  a c-section and an awesome OBGYN (Dr. Willam Hughes. Rocky Mountain in Davis Hospital), I ended up staying in the hospital for about 5 days so I could be with Connor for atleast part of his NICU stay.   ....what we thought would be a couple of nights in the NICU for Connor, ended up being 2 entire weeks and there was alot of stress, trying to do right by a teen, a 14 month old, my husband's job, etc.  Not easy at all.

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In order for Connor to get home, he had to have no destats for 72 hours straight.  (destat meaning that he had a 'spell' of not breathing, chocking, or needing oxygen).  He got off his NG tube after 5 or 6 days and then started taking a bottle from the Haberman nipple.  The Haberman had a special valve that allowed for you to help squeeze formula into his mouth since he really didn't have suction without a palate in his upper mouth.  ...we were instructed to squeeze hard because he was truly not sucking but he would swallow it.  He began to grow about an ounce a day with this (after having lost a little over a pound...which is considered normal).

We were still in a state of not knowing why Connor was having his 'spells' and little by little the doctors started saying that they thought his chin was more of a problem then his cleft palate.  We had no answers and were extremely frustrated.  We had noticed a smaller than normal tongue as well and after a week, one of his doctor's finally said the words, Pierre Robin.  We were given the number of a craniofacial plastic surgeon  (Dr. Faizi Siddiqi) at Primary Children's and the rules for him having 'spells' and not leaving for 72 hours were relaxed somewhat because he wasn't needing oxygen but definitely having little choking issues.  At some point during his NICU stay it was decided not to leave him on his back, to always have him elevated and after 2 weeks he was sent home with an apnea monitor that would go off if his heart stopped or his lungs went too fast or too slow.  It was a battle to get the apnea monitor but alot of that had to do with us having lost a daughter only 2 and a half years before and us believing we would never sleep worrying about Connor.  Fortunately, his pediatrician agreed and insurance covered the monitor.

Cutie!

This is Connor at home in his bassinett.  This shows his profile pretty well.

14 month old brother, Sawyer....styling during his bath.

yep....cute little Mohawk



Connor's first visit to Primary Children's Hospital....a great children's hospital that serves no less than 7 states.  Our first visit with Dr. Siddiqi, craniofacial plastic surgeon, was fairly quick.  He gave us basics that his palate would be fixed at around a year old, that he would schedule a sleep study, we were to schedule a "team" visit with the craniofacial team, we'd schedule a visit with an ENT (ear, nose and throat doc), and he'd see us again soon.    .....also, can not stress enough what a wonderful doctor this is!!!!  He makes his own house calls and during his hospital stay, was there daily to check on him.


Connor had his sleep study in the middle of April...he wasn't yet one month old.

He was connected from the top of his head to the bottom of his feet...literally.  It was beyond uncomfortable looking and I didn't know how he'd ever sleep.

This was my bed.  Yeah...didn't sleep there.  I laid down next to Connor and pretty much was up hourly with him and also had to feed him.

This was the morning after the sleep study when they unhooked him from everything.  He actually did amazing and got SOME sleep.  I felt certain that they wouldn't figure out a thing because he was up so much.

Sawyer having a little nutella.   (Tristan avoids my phone picture taking...so don't expect too many!)

Connor's cleft palate.

A break for the babies to go to the park....Sawyer did alot of running with the ducks this day!


It took some time for Sawyer to learn to just love on Connor but honestly, even to this day, Sawyer kisses Connor more than anything.  There are the occassional moments when Sawyer wants total attention and he may feel the need to hit...but this has been rare...thank God!

A visit with Dr. Siddiqi soon after his sleep study.  (this is daddy, Mikey)   ...on this visit we discovered that Connor showed severe obstructive sleep apnea so the doctor wanted to go ahead with a jaw distraction surgery that would push Connor's chin forward.  The chin back meant his airway was severely obstructed.  This day Connor got a quick cat scan and we were given a date of May 9th for Connor's surgery.  We were told to expect 3 or 4 days for a hospital stay and that we'd turn the screws from his distractors 4 days after his surgery.  We'd end up turning the screws twice a day for just over a week.

This was May 9th, right before his surgery  This a pretty good picture of how far back his jaw and chin are at this point in time.  This was a scary Wednesday morning.  Luckily, Connor was out so handing him to the doctor wasn't a horrible teary production though Mikey and I had a tough time.   ....he was slotted to be in surgery for 4 and a half hours.  He had an anasthesiologist, his ENT doctor (whom we had not met because his surgery was so soon), and of course, Dr. Siddiqi and some nurses and residents. 

This was one of our first views of Connor after surgery.

He was on a ventilator to help with breathing after anasthesia.  This is pretty common and remember he's just over a month old here.  If you look closely, you can see the distractors behind his ears and the cut that was made on each side of his chin.  They basically scrape past tissue and muscle to expose the bone, cut the bone, place the screws and soon after, we will begin turning the distractors behind his ears to push his jaw forward.

This was beyond a horrible experience for us.  Once again we had a baby hooked up to a ventilator and machines.  We had a horrible time again of seperating Connor's experience with what we had been through with Ireland.  Ireland and Connor just happened to look very much alike swollen and attached to machines.   ....Connor was having a tough time getting off of the ventilator.  He was on morphine, other pain meds and what we ended up calling the evil Precedex.  The precedex did something to slow his diaphragm down and Connor was getting in a state of just wanting the machines to do all of the work for him.

This is a close up of the distractor.  We started turning it 3 times, twice a day. After 8 days of doing this we were done.  This pic also shows alot of his swelling.

Connor as on a ventilator, too many meds, and scaring us horribly.  We discovered the precedex was the medicine that really through Connor into a lazy state but because he was having  difficult time with pain and all of a sudden his lungs were sounding horrible, they kept him on this med.

As Connor slowly was waking up from his drug induced sleep, he barely had a voice or cry.  I was staying every night even though during his PICU (pediatric intensive care unit) stay he had 24 hour nurse care where his nurse literally stayed by his side.  If a nurse would take a break she/he ould get a replacement before leaving.

Connor ended up being in the NICU for a week before his intubaton tube (conected to he ventilator and between his lung) was pulled.   ....what actually happened was, I had finally decided to come home and within a couple of hours, the doctors hd decided to do an x-ray to check tube placement and they noticed it wasn't where it should have been so they called us and long story short, the tube was pulled out before we even made it back to the hospital.  This involved us getting a sitter, Mikey having to leave work (yet again for a mini crisis), and us making the phone calls to family and close friends.  I repacked to stay the night because we'd be watching how he did off the tube.

He did alright though his sounds were still very soft.  here you can see how much his chin has been moved forward and he looks fairly different.  He also looks just tired.  Soon after being extubated (removing the tube from the ventilator) we moved to the ISCU (infant surgical care unit).  Once there, he would be off 24 hour nursing care.  And though his nurses were wonderful, we felt it best I stay because the nurses were usually tending 3 or 4 other babies and you could not hear if Connor was crying.  ...so, it was a personal decision to keep watch.  Plus, Connor was still hurting from a major jaw distraction surgery and now was having an unknown/undiagnosed problem.

After having cultures done to rule out Connor contracting RSV or any other virus, it was decided t see if he was aspirating (basically swallowing and instead of all the formula going to his stomach, some going to his lungs).  He had a swallow study that is basically a live x-ray watching him swallow different thichnesses of formua.  It was pbvious he was pooling his formula in the back of his throat and then just letting it drop...meaning, he was aspirating.  ....this picture shows the bottle nipple (the dark spot at the left) and you can also see his distractors (the long angled screws below his teeth buds).

This is Connor done with his screws being turned.   Major difference in his chin.

Connor still on meds but beginning to be a happier baby.  Not as many tubes, not always drugged to the point of constant sleeping, and getting tons of attention.

Shortly after being done turning his screws, the long adaptor "thingies' were removed and he was left with a small screw.  There is a sort of joint at the tip here and we ended up needing to keep bandaids under this all the time to keep that joint from rubbing him raw here (to this day, caring for his ears involves placing a bandaid under here...it's a tight fit under there and not something Connor looks forward to).

After deciding thickening formula and swallowing was hurting Connor more than helping him, it was decided to put an NJ tube in him for his nutritional needs.  ....he was extremely swollen in his throat and down his esophogus from his surgery and most likely from reflux and aspiration from birth.  ....the NJ tube differs from the NG tube in that it requires an x-ray to place the tube in the coils of his intestines.

We were finally released on Monday the 21st. A home health company would meet us at home and show us how to use his feeding equipment.  Of course, drama came.  The company was late, we panicked and called the hospital because this meant he wasn't getting nutrition.  ....the home health van eventually came...the home health nurse eventually arrived....a grandma had been flown here to help us out....and we were on our way to  caring for Connor on our own.  ....and then that night, the tube came out.   .........a little panic, a call to the hubby, a call to the doctor.....and I was back at Primary Children's to have another x-ray done to put the NJ tube back.  Yep, same day he was released.   ...........not an easy road peeps.

We learn as we go.  We learned of these binkies that had little stuffed animals attached to them (wubbanub).  They supposedly helped keep the binkies in babies mouths.  Well, didn't really work that great for Connor.  We were up constantly in the night because he wanted his binky but because he couldn't suck, we'd have to prop things against his binky.  Fortunately, he sleeps with a monitor so if by any chance something went wrong, we'd be alarmed by a pretty lound beeping from his machine.  (to this day, this has never happened even though the monitor did initially go off mainly because his leads would fall off...leads are the sticky things attached under his arms and to the machine)

Sawyer helping with clean up after a party we had for his brother Tristan's 17th birthday. ....hmm, where are the pics from that????

Marnee, goddess shopper, found us a bunch of beanie babies.  I sewed this one to a binky and man...it's been a life saver.  If your kid needs one because of a cleft palate, get a good strong embroidery needle, a book to push against as you sew through that thick binkie and then thank your mama or grandma or whoever for teaching you this basic skill.  You may now sleep a little better....until the dog/beanie/baby moves.

Sawyer got his first hair cut at some point in this journey.  Did great with the scissors but hell broke loose the moment the clippers came out.  My boy may end up with a mullett because the experience ended with just a horrible front cut.

Yeah....freaking adorable!!!.....just recently, Connor has been moved to an NG tube.  He was to have the distractors removed on June 20th but his lungs sounded horrible so the doctors made the decision to postpone the surgery until July 18th when he'll also have tubes placed in his ears.  The journey for discovering his lung and breathing issues is ongoing.  His aspiration, reflux and feeding issues are also still being looked into.  As of today, he does not know how to swallow.

This is his feeding machine and various meds.  Every morning he gets a new bag.  We tend to put  8 ozs of formula in the bag at a time.  He gets all of his nutrition from this.  He has been on Similac Sensitive formula and gets 24 ozs. a day.

This is his handy, dandy backpack.  It holds his formula, feeding machine, some sterilized water with a syringe (to flush the system or give meds), a stetoscope (to listen for air bubbles when placing NG tube and also to make sure placement is where it should still be ...you'll hear bubbles when you put air in the tummy and listen with the stethoscope to the left of his belly button), this also holds his diapers, an extra outfit, and if we need to go anywhere, it holds Sawyer's extras and a wallet and cell phone for me.

This is a port on his tube to give meds and to also flush the tubes with water periodically to keep them from getting blocked.  We use warm water when flushing and he needs this done atleast every 4 hours.  Now that he is also getting intermittent feeds (2hours receiving 90ml/3ounces and 1 hour shut off), we can disconnect him and don't have to constantly carry him around with the back pack.  Of course, whenever he is reciving a feed/formula, he has to be connected to the feeding machine and therefore, the backpack is a constant fixture.

This is a typical scene at our house.  He is in his high chair, in the kitchen with his binky dog and back pack hooked to the front of his seat.  He is at about a 30 to 45 degree angle as much as possible to help with his reflux that we are discovering he tends to aspirate rather than spit up (though there is a little spit up now that he's having formula in his stomach).    ....once we're all done with breakfast, Connor has his diaper changed, I take care of his ears (washing around the distractors with a wet q-tip and bacetracin placed where the distractors protude from his ears and then a baindaid placed under the joint), and we care for his mouth (using a damp mouth sponge to clean out his mouth and some special chapstick that won't eat at the plastic from his tubes).  I also used to suction Connor at this time with an industrial hospital suctioning device.  From the time he got off the ventilator (after his surgery) until about 3 weeks ago, he has needed suctioning anywhere from 3 to 5 times a day.  I used to get huge amounts of white mucous from him......this is better even though there is still an issue.  We've also just recently discovered he has a case of retracted breathing ( a quick youtube search will show you this).  It is something we didn't look for before and only in the past week the pediatrican noticed during a trial breathing treatment (which just exasperated his lung/breathing problems).

A typical morning with Sawyer watching me get Connor together and trying to keep Sawyer in a good mood too.

Blocks under Connor's bed ....this helps with reflux.

A snugglie to keep Connor swaddled at night.  He gets an ounce an hour of formula so that we don't have to get up to turn off the feeding machine.  We do get up atleast once a night to flush his tubes out.  He also stays hooked up to his apnea monitor at night just in case he chokes on his reflux (he's always self recovered from these episodes and he's yet to set off the machine....but we sleep well because we know we'd be alarmed if he needs help...and alarm is as loud as a fire alrm!!)

Sawyer getting some pool time.  He prefers to play outside of the pool rather than in it.  ...and Tristan is with his dad for the summer.  I wish I could add the pics his dad's sent me because he's having a blast in Florida.  

Connor is actually looking good.  He has quite a few doctors, some equipment issues that may be changing back to an NJ tube and maybe move to a G tube (more to come on that one), he has oodles of appointments, and another surgery soon (July 18th).  His weight this past Friday was 11lbs, 2 ozs. and he turned 3 months on Saturday.  He's got a road to go but we feel confident that he'll become a normal, responsible, caring adult.   ........we'll keep ya posted as well as we can as we learn more.  If by chance you have a question, email me (mikeandchanda@gmail.com) or send a message through this blog.  We'll do our best to answer anything.   ....there isn't a ton out there for Pierre Robin and I hope this helps someone in our same boat.