Maybe some DABDA....maybe not

Well, it's been awhile.  We've been busy and I've frankly been tired.   ...........anywho, this week started Monday morning with me having to make a ton of phone calls.  I think I was in a sense of denial that Connor was doing so great and well, honestly...for once, I am stumped.   ......I don't know if I wrote it here before or not, but I read somewhere that when your child is born with a special need that we go through the same grieving process as someone who's lost a child.  Well, we are familiar with the entire DABDA (depression, anger, bargaining, denial and then finally, acceptance) process.  We got a ton of information on that after Ireland passed away.   ........I wasn't sure if this was true or not with Connor because I wasn't depressed at first.  Or, maybe I was.  I do remember screaming and crying the first night he was born.  I recall being sleepless but remember mostly, just wanting to know what was wrong and how do we fix it.  Ok, maybe that was my anger.  Bargaining?  I'm not sure about that one at all.  I don't recall screaming to God and asking if I could take his place.  I don't know if because we'd already dealt with another baby, another illness that I already knew that a scenario like that sure wasn't going to happen.  I think I just knew that we needed to know what he had and to find the answers to deal with it.  .....so, to me anyway, I skipped the whole bargaining step and went straight to a sort of denial last week.  Then again, maybe I was just being lazy.  A sigh of relief maybe.  I just know we had an easy week.  I had to see the pediatrician and it felt nice to have a sort of break from doctors and all their opinions and the seemingly endless amount of frustration of their extremely differing ideas on what was best, what is good for Connor, what isn't so great of an idea.  ....It was nice to sit with my boys and call Tristan.  We ordered pizza, watched a movie, had baths, threw blocks, threw tantrums....felt somewhat normal.   .....then at some point, I got a call from the speech therapist and she asked if she could see me at 5pm on such and such day...nope, Mikey's working...Connor's good....he's slated for the g-tube anyway, we'll see you after that.  Then I missed the call from the GI department that said Connor indeed needed an upper GI (xray to see that his esophagus, tummy and intestines look good).....that's when I realized I better wake up.  I still needed follow up appointments with plastics to make sure he was healing well from getting the distractors out, I needed to get a hearing test for Connor and a follow up with his ear tubes, I needed to set up times for early intervention to come out and start working with him, and I still needed to set up a time for our G-tube class....oh, denial.   ...or laziness.  or just needing a break.  Who knows?!   .....anyway, I did all these things finally on Monday morning.  The week looked crazy on the appointment book.  I had to immediately go to Primary's Monday afternoon for his upper GI.  That took quite awhile because there was no paperwork that he needed it.  And of course, Connor decided to pull his tube out earlier so the tech had me wait for the doctor.  Luckily, my doctor was a no nonsense kind of guy and he said for me to go ahead and place it so we wouldn't have to wait around for paperwork saying that it was ok for him to place it....oh, how we must cover the doctor's assets with a paperwork and charge for every little thing.  Bless this doc for having common sense and hope it doesn't screw him down the road.  ....well, the upper GI showed significant reflux after just 2 ounces of formula in Connor's stomach but the anatomy was all where it should be.  After a small discussion, we decided that it's possible the GI doctors will possibly try to push a surgery on us that twists the top of Connor's stomach to prevent him from refluxing.  We (the radiologists and I) agreed that surgeons will push surgery and that the speech therapists would try everything else before ever suggesting this sort of surgery.  Mikey and I agree that we will continue working with speech therapy before we'll consider a surgery of this magnitude.  There are a lot of complications that can happen with twisting anatomy and frankly, it'll be a last resort before we go there.  We've already had the discussion before with our pediatrician and anticipate having the discussion again with others.   ....well, Tuesday morning was time to see plastics.  Dr. Siddiqui believes Connor looks great and we'll just be using some vitamin E oil to work on healing Connor's scars further.  To date, his scarring is minimal and his big cheeks cover everything.  In time, they will fade.  And his actual jaw looks wonderful and his airway is very much open.   We did discuss the need of a prosthesis for Connor's cleft palate.  Because he has so many feeding issues and issues with horrible amounts of secretions (mucus), we figure a prosthesis can only help Connor.  So, next Thursday, we will visit with a craniofacial orthodontist at Primary Children's.  We won't see Dr. Siddiqui again until December or January to start discussing fixing his cleft palate.....once I came home from the plastics appointment, I had about two hours before my friend would be at my house to go with me to the G-tube class.  ....there isn't alot to say about the class.  It was informative to the point of confusing.  There are quite a few different types of tubes used and their are minor differences with these but the differences are important enough to be beyond important for your particular case.  At one point we were told a "peg" tube (the peg being the plastic part that is connected to the tube and seen from the outside of the stomach) needed to be turned once a day.  Then we were told if your baby would require a "G-J" tube (the actual tube that would go instead of in his stomach to go through the stomach and to the intestines) that this could not be turned as it would turn the coils of the intestines and be traumatic.  Wouldn't you know that Connor's surgery for Wednesday was cancelled because "peg" tubes were on back order.  Wouldn't you know Connor's surgery for a G tube may become a G-J tube surgery because of his reflux.    ......Contradiction???...yeah.    Also, the class discussed many things that simply wouldn't apply to Connor's particular condition and finally, I just sat back and thanked God that I had a great pediatrician that happened to train here at Primary Children's and knows all about these tubes and such.  I was nervous the first time we came home with Connor and his various tubes and all that was entailed with caring for him and the tube itself.  Today, it's just part of his routine.  Nothing too dramatic though I wish I could just throw a bottle in his mouth.   .....the G tube is a serious thing though.  I definitely got that from the class.  It will be a blessing in many ways but it is a very serious surgery.  For atleast 2 months, he will not be able to take a normal bath.  It will be an opening from the outside world into his insides.  If it were to be pulled out, it can close in 20 minutes due to the stomach being a muscle and contraction would take place.   ....all in all though, I know in time, it'll become part of our routine.   ......Connor is scheduled for his G-tube surgery on the 22nd of August.  There are other types of tubes that he could have but his particular doctor is trained for the peg tube.  I could get Connor to see another doctor and have a different sort of G-tube placed but by the time we would see another doctor, and have him rescheduled...it'd probably be right around the same date as he already has.  Part of me would like to see the doctor because honestly, I've only spoken with his GI doctor for all of about 5 minutes but apparently this is how things are done.  Connor has pages of files, multiple caretakers/doctors and this is where we are at.   .....so, I'm back to not taking breaks and doing our thing.  Tristan will be home Wednesday.  YAY!!!  Prayers for a good year for him and us during our teenage dramas.  Connor will see the craniofacial orthodontist and his speech therapist next week.  I am currently trying to get ahold of early intervention (where the heck did I put that number?!?!).   ....this morning, maybe denial again, I said screw it and after dipping a binky in Connor's mouth, I put thickened formula in his special bottle with the pigeon nipple (fancy nipple that he needs for cleft palate).  Yeah, I did it.  Because I'm his mama and I'm knowing him waaaaaay better than any doctor.  And of course, I'm thinking he's going to do this thing like he's never had an issue.  ...after 40 minutes, he may have got 10 ml (one third an ounce).  Yeah, crushing.  BUT, he loved it.  I will discuss it with the speech therapist next week.  I think the formula is too thick to even go through the stinking nipple but then again, he needs it thick so he doesn't aspirate the stuff in his lungs.  I'll binky dip later...or rather I'll dip the outside of his bottle nipple.    .....crappy road for Connor....sure wish there was a way to speed up this process.   ..........meanwhile, he was happy to be cuddled and have a bottle in his face.  .....Sawyer and Mikey are currently doing yard work.  ....things are good.  I hung out with a friend and her girls last night.  This past weekend I got to go to a birthday party (by myself!) and see good friends.  We also had some friends over one night and got to play a few hands of cards....nice.   .....all of these things going on with Connor are becoming not so dramatic but more of a routine.  It is redefining us I'm sure ....and in time maybe I'll see if we were affected the same as when we lost Ireland.  .....but, I don't think so.  Right now, I see similarities.  I see moods and how this has affected every member of our family in different ways but bottom line is, Connor is here.  He laughs and is even starting to play with toys.  He is aware and has all of his senses.  He will even be able to eventually eat and have a week with absolutely no doctor appointments.  ......and to end this, August has become my least favorite month.  Ireland was born and passed away during this month.  I miss her.  I love her.  ....this year she would have been 3.    We experience the entire spectrum of the DABDA formula some doctor came up with.  I wish she were here but know there are always going to be things worse than death.  We most definitely have accepted her not being with us.....but it will never mean we don't wish she were with us.   ....ok, prayers for a decent month.  Lots coming up and progressing forward is my constant task.

Connor's happenings as I sat and typed this up just now.

Night before last, Sawyer and Lucky hanging out during the olympics.  GO USA!

Tristan, last year.  Coming home in less than a week!...and this beautiful pic to remind the ladies he's beautiful!!!....and he's available again!!!!

And, my beautiful Irealand with her daddy.  I can only imagine her playing around with all these boys.....she'd be so spoiled!!!

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! 

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.

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.

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.

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.

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.)