Wednesday, January 30, 2013

Palate surgery today...and an event

It's another night before surgery and I'm up at 3am.  ........I'm hoping that Connor doesn't wake too early this morning because he's not allowed a bottle.  .......yesterday was a constant stream of calls from the hospital.  They kept changing the time by half an hour.  Back and forth.  915am...945am.....last call was surgery will be at 915am.  He was allowed his normal thickened haberman bottle until 2am which of course we just gave him a normal night bottle at bedtime....and then he's allowed pedialyte by the gtube until 745am.  That will be interesting because we haven't used his tube for some time except for medicines.  ........I'm also going to have to make a phone call first thing this morning to see what amount and speed they suggest (i didn't think to ask earlier).        ...his reflux always seems worse to me when he gets thin g tube feed along with a larger amount put directly in his stomach too fast.  Part of me doesn't want to give him anything for this reason but he's a little older now (10 months exactly today) and he's going to be upset and hungry...maybe the gtube feed will satisfy his tummy.
...........last night I felt so euphoric and ok with this surgery. 3am, I'm of course scared.  .......Mikey and I talked about how when I was pregnant with Connor we hoped we'd love him as much as Sawyer.  I shouldn't have felt this way I suppose, sense I obviously knew Tristan was loved so much too but at that time, Sawyer was our baby..........and of course, Connor came along and our hearts nearly burst they'd become so full.   ......we came to the conclusion last night that we love each of our children soooooo much and yet differently.  Tristan will always be my first son.  Ireland, my angel, my girl.  Sawyer will always be my baby that brought happiness immediately back into my world.  Connor will always be my baby...our baby.    .......Connor is the last child (I had those tubes tied).  He is forever the youngest.  He is our baby.
...........when you wake up afraid of another surgery and you've shed through the facts that this is his 6th surgery, this will be his 6 time under anasthesia, he's loved by his doctors and nurses that have gotten to know him this're left raw and feeling the ultimate fears.  It's not about what he's already been through, or what he's accomplished, or the odds he's's that your baby will be taken from you, put to sleep, and be cut and sewn as if he were mere fabric.  He will be monitored and this is a surgery done everyday in major hospitals and even third world countries.  ........but in the end, he's my baby and I don't want him to suffer even though he will.  I don't like the thought of being powerless to that fact and I am not looking forward to handing over my baby that has grown by leaps and bounds in mere months, who reaches for me, who repeatedly says mamamama (who cares if it's the only sound he can's still mama).....
In wrapping up those feelings until I am awakened by my family.....I want to switch over to charitable giving.  .......My sister in law, Bonnie and cousin in law, Aileen decided awhile back to do something to raise some money to help us out a bit with all of the medical expenses we deal with.  .......truthfully, I thought they were going to do something crafty in one of their homes.  ......well, recently we found out that it's a bit more.  A hall has been donated, tables are being sold so vendors can sell their wares, bake sales are happening just for us, raffles/auctions are taking place, food will be is truly overwhelming.    ......the first night I read a simple facebook message, I truly didn't know what to say.  I was thankful and overwhelmed.  ....they wanted our input on a flyer and we just didn't want people to feel sorry for us.'s a weird feeling to know that people look at us with possible pity...and I don't like that thought though I understand it because we look at others and feel for them.  ........anywho, we wanted our immediate families to know that they were doing this so feelings were spared and toes didn't feel stepped on.  ....even writing about this feels a bit bizarre.   .......Anyway, it's something I've just truly become thankful about now.  We still have the everyday gripes of a roof leaking, or a washer slowly dying by throwing another leak in the house, or my health causing some issues.  We haven't had a vacation in what is now becoming years.  ...we have the exact same wants and problems that everyone else has and yet, we keep alot of things to ourselves because we don't want judgement or more pity.   ......I'm learning to let go of that word, pity.  Connor has a condition that will take years to help him be "mainstream".  Medical conditions are simply not cheap.  We have what we'd consider very good insurance, blue cross blue shield.  Knowing that, we have that big family and individula deductible we pay before the "everything is free" feeling kicks in, we have numerous appointments that we need gas in the car to get to and from, certain doctors have fees charged independent from insurance, early intervention is income based and somewhat cheap but we pay for that out of pocket,  Connor had to try a gazillion bottles and we paid for all of them, he will need sippy cups and we'll have to find the one that works for him since he can't suck (we'll pay for those), he's used little gtube pads around his stoma site (one time expense but we pay for those),   ...........anywho, on and on, we all know health care is not cheap.  We are also facing the fact that if a national budget is not reached soon, our insurance will balloon to around $1600 a month (take that number in perspective too, because that's a national issue, all of us face this one in some way or another).  ......we've decided that any money giving to us will go into a special account and because it's just bills, receipts for gas, medicine ( his erythromyacin had to paid out of pocket this January and that was a whopping $125...he needs that one monthly, eek!)  we'll also figure out how to make a separate page on this blog to account from every single cent given.  We're in the age that a picture can be taken and shown immediately so why not be totally accountable.  It does not bother us to do this because we personally have issues with charitable giving.  We live in a world where people have really gotten ridiculous with executive pays and even charities having overpaid heads.  We also live in that world where one person may not have a home over their heads and not a bite to eat while the poor guy down the street is playing the system and living like a king on welfare.    ......bottom line, we will figure out a way that is accessible and has everyone knowing where the money is going.  I'm pretty sure a blog page is the answer but if you know an app that'll make it easier on this blog, please let us know.    ........anyway, once Bonnie and Aileen have their flyer ready, I'll post it on here.  I believe the benefit (not sure of the word) is being held on the Saturday before Easter.  It's in PA though I know my VA family is also involved....and I believe another church is helping out along with my mother in law's church.
anyway, the mind is racing.  I have that xanax bottle but have not once cracked it open and doubt I will today.  I have this thing where I believe everything I'm feeling with Connor is perfectly normal.  And when my emotions get on high gear, which they surely will when I see him after surgery, I know it's ok to be afraid the worst will happen, it's ok to cry because he's hurting and swollen and not himself....  I've been repeatedly told to where an old shirt today because a mouth surgery is very bloody business.  Not cool.  I'm glad to know but it's very hard to look in your closet and say what looks nice but is ok to get bloodied from our baby.   ...........I wish it was over already.  I'm pretty sure as long as everything goes as planned, we'll be home by the weekend if not sooner.  I'm ready for that time.      ......I still haven't even packed.  I have that running list in my head but don't want to wake anyone up.  ......I was going to pack last night but got tired and felt I should try to get some sleep.     .............I'll update things as I can on facebook and try to keep an account of what goes on here in the blog so that those other Pierre Robin moms will know exactly what happens.  A cleft palate is something every Pierre Robin child's part of the diagnosis.
......prayers and well wishes are appreciated.
These guys are going to miss each other.

Daddy and Sawyer

He normally has the doggie....but the monkey is a good back up.  If his mouth will be horrible and nothing allowed in the mouth afterwards,.............hmm, don't know where my line of thought is here.  It's going to be tough comforting with objects because at 10 months, what baby doesn't put everything in their mouth?!   ......oh well, cute pic!

Supposedly these fat cheeks will be swollen..........

It has been so fun seeing how excited Sawyer gets with all of this snow.

a much older pic...but this shows Connor right before Christmas.....he has grown sooooo much even just in the last month.

Sawyer has a thing for jumping in the pac and play...and waking his brother by getting in his crib....we're going to have to nip this in the bud.

Oh, how I love this little guy!

Tristan, Sawyer....Mikey and I....his grandparents, aunts and uncles, cousins, friends, all family....we sure can't wait for this to be just another surgery we can scratch off the list.

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